Autism, Wilson's Disease, and the ADHD Answer

No Such Thing as Coincidence

2011-11-21T16:30:00.000-08:00

One day I was reading the newspaper (something I normally don't do) and found an ad for a job writing for the newspaper. It was a tiny box on the from page and it said, "We are looking for the new face of East Montgomery." I continued reading and it sounded interesting. I remember throwing the newspaper away and telling myself that I would never have time to do anything like that.
Months went by and I saw the same ad once again. This time I decided to keep it. I folded it and put it away to discuss with my husband at a later time. I still wasn't convinced I would have the time to do it, but I was intrigued at the idea. It was something I've always dreamed of doing. I found the time to talk it over and my husband was concerned that having an extra obligation would stress me out. I have to admitnthat I had the same concern.
The ad requested a short description of why I thought I would be the right person for the job. It had to be 100 words or less. I decided to give it a shot. I honestly didn't think I would hear back from them. I was wrong. I received a call from the editor's assistant. She actually called me seconds before we were about to change my cellphone to an upgrade. We held off disconnecting it until my call was over. We agreed on a day and time to meet for my interview. I was so excited! However, at this point I was unaware of the fact that this was a paying job! I was going to an actual job interview!
I showed up to the newspaper building and everyone there was so sweet. They treated me with respect and almost like they were trying to sell ME the job. I listened to the editor describe the job in full detail and my heart beat faster and faster with each passing moment. It was my dream job! I would only have to submit a column once a week and the area I would cover would be my own area! I had lived here long enough to have various contacts and so that would be no problem.
I left the hour-long interview feeling wonderful! I prayed that I would get the job. I was told they still had another applicant. In the meantime I had to submit my first column. The editor gave me the choice of what to write about. I chose to write an introduction to my column. It was very easy for me. I submitted it right away. Unfortunately, my competition wasn't as efficient and I had to wait for them to receive the other before receiving an answer.
My answer came Mother's Day weekend. I received an email congratulating me on getting the job. Evidently they had tried to call and didn't have luck. The editor was so sweet. She wrote that she wanted me to know as soon as possible. It was the best Mother's Day gift I could have received.
It has been over six months now since I got the job and I'm still loving it!! I have learned so much about my community and have made some great contacts. It has also helped me to reach out more. I think it's important to expand our circles and appreciate diversity.
This Thanksgiving holiday I am thankful for all my blessings... Including those that were unexpected.

Finding Time for You

2011-06-16T13:34:00.000-07:00

If you find yourself overwhelmed with all of your motherly duties you are not alone. There are just not enough hours in a day to do everything that needs to be done. In the list of priorities mothers often fall last...and that is nobody's fault but our own. I have a few suggestions I have found helpful in my life and perhaps they can give you ideas for your own circumstances.
Count your blessings
You have to mentally prepare for hardships. The best way to do that is to concentrate on your blessings. Changing your mindset to a positive attitude will help you not only feel better, but give you the motivation you need to get it done! This means beginning your day with prayer and/or meditation.
Don't bite off more than you can chew
I mean this literally as well as symbolic. Learn your limits. There are some things you just can't do no matter how hard you try. You might be limited by time, money, or any other factor. It doesn't matter what other people think. In the grand scheme of things YOU are the only one accountable to yourself.
Slow down
Take time to appreciate sweet and precious moments. If you are constantly "on the go" then you are going to miss out on some very special things. This kind of state only makes people sick and stressed out.
Forgive yourself often
Don't let mistakes you make discourage you. Learn from those mistakes. Nobody is perfect and it's about time you realize that. Also, how are you supposed to forgive others if you can't forgive yourself? The fact is you can't move forward and progress without giving yourself a clean slate.
Take care of yourself so that you can take care of others
This is pretty straight forward. If you eat healthy, then your family is more likely to eat healthy. If you live an active lifestyle instead of being a couch potato then your family is more likely to do the same. If mommy is happy, then the rest of the family is happy. Just remember that when you take care of yourself the return on that investment will yield more than you can imagine.

I am a busy mother of four very active children. People often ask me how I find time to write, crochet, and do many of the things I enjoy. Well, it's not easy but I just tell myself that I have the choice. I can choose to waste and squander my time, or I can choose to do productive and satisfying things. You have the same choice. Take note of how you use your time during a typical day....continue for a week....you will be amazed at how much time you actually have.
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If you were given one
extra hour each day,
how would you use it?
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It's Okay to Cry

2011-05-15T18:14:00.000-07:00

I felt the need to write this post after speaking to a few friends in recent months. It seems like mothers have so much on their plate sometimes that they feel overwhelmed and alone. I want to set the record straight. There is no such thing as the perfect mother. We ALL make mistakes. It's completely NORMAL to feel inadequate and depressed at times. It's also okay to cry. I think crying can be very therapeutic. It's not a good idea to keep feelings bottled up because sooner or later, they will explode out! Acknowledge your feelings and share them with those closest to you.
I'm not a psychologist or psychiatrist, but I've dealt enough with them to know that most of the time what people need is a listening ear. That is the best therapy in the world. I am blessed to have my mother and my bestest friends who I can call and share those feelings with. They don't judge me and they listen without feeling like they have to have a solution. Most of the time there is no solution. The problems I face have been around since the beginning of time and I know that I will one day look back and realize they were not as critical as I thought. I can already see things getting easier in areas I thought would never improve. Of course, that doesn't mean I don't have days I literally cry myself to sleep. However, it helps knowing how far we've come.
Please know that in the grand scheme of things what's important is what you have taught your children. They have their free agency to choose for themselves the path their lives take. It's our role to provide them with options. It's our duty to love them unconditionally and to guide them. Beyond that, it's not important what others think or if your child doesn't fit that "mold" that society has created. Don't give up on yourself or your children. Cry a little and laugh a little...that's what will keep you sane.

Meeting Temple Grandin was Grand!

2011-04-26T15:34:00.000-07:00

I had the opportunity of meeting one of my heroes. Her name is Temple Grandin. People who have autism or live in that world know that name very well. She is an advocate, educator, and a true inspiration! HBO had a special movie entitled, "Thinking in Pictures" which was based on her book. It was amazing. Her life story is one of hope and determination.
She was a guest speaker at Auburn University main campus and I found out about it through a friend. I went with a group of ladies who all have children in the autism spectrum. We had a blast! The experience of just driving there and talking candidly about autism was an experience in itself. When we arrived, the place was already packed with people. We didn't have a seat to sit on, so we found a spot on the ground. We sat alongside many college students who were there to hear her speak about livestock science.
When Temple came out, everyone stood and clapped. It was a warm welcome. She spoke right away about her autism and gave a brief history of her past. She then talked about how animals think and correlated it to autism and how people with autism think. I thought her presentation was very informative. However, beyond that I feel that her spirit and enthusiasm was contagious. She joked around a few times and I appreciated her dry sense of humor at times. Her appearance was exactly what I expected. She was wearing her western long-sleeved shirt with matching pants and buckle. She had some good visuals while she talked to explain some of the concepts. I think you could hear a pin drop while she spoke. It was all very interesting.
When she concluded her talk, she opened the floor for questions. There were questions about autism and livestock. Someone asked her about medication. She admitted that she took medication for anxiety and that it was sometimes helpful for people with autism. She explained that there is a lot of stimulus in the environment that we take for granted. For example, she mentioned how hallogen lights are the worst thing in school. She said the buzzing alone is enough to drive someone mad. She also touched on the subject of dyslexia. I thought she gave some very useful advice on the topic. She mentioned that changing the screen color to pink, for example, can help.
She answered questions for a great amount of time and then they announced that she would be staying to visit with everyone. My group was so excited! One of our ladies had brought a book for her to sign and she was hoping she'd have the opportunity.
Temple stayed for over an hour signing autographs, taking pictures, and even answering MORE questions. I thought she was wonderful. We found out she had given talk that morning and that she'd be back the next morning. However, she didn't mind staying at all. At her age I thought it was quite impressive.
I got my picture taken with her and we also got a group picture. Once I figure out how to post pics, I will do it. I think meeting Temple will always hold a special place in my heart. It was more than meeting someone I admired and looked up to. It was also a moment where I felt a connection with so many people I didn't even know. It felt like I was in the midst of family and friends. That is something that is truly priceless. I will never forget that day.

When Things Don't Go As Planned

2011-02-19T13:04:00.000-08:00

When you have a child in "the spectrum" one thing is always certain: uncertainty! You never know what is going to happen. A parent can plan ahead, try with all their might, even say a prayer...but some things are just out of our control. That is why it's so important to remain flexible and open-minded.

Today my child had a pinewood derby with the scouts and I did everything I could to make sure it would be an enjoyable time. I made sure he took his medication an hour beforehand. I made sure he ate a good high protein breakfast. I thought I had everything covered. Well...one thing I forgot about was how chaotic things can get when you get a large group of young cub scouts who are excited to race! We arrived about forty minutes early to give us plenty of time to register and take care of weight requirements for car, etc...It was a good thing we did because we ended up having to do a great deal more than anticipated. Everything was organized very well and the boys were busy with activities while we waited, leaving little or no lag time. The only problem was that by the time my son was ready to race, he was ready to go home. It was very disappointing. He began to get restless and a bit defiant. I felt so helpless and alone as I saw others giving him "that look" which I tried to ignore. If only they knew.

We stayed through the end of the races and then decided to leave. He was overstimulated and it would be unfair to him to keep him any longer. It's at times like these that I feel like he's missing out on some of the most fun social experiences of his life. Other boys were so excited to watch their cars race by and cheered and had a great time. I sat and watched my son barely being able to listen and pay attention as numbers were called. It was heartbreaking.

I am not posting this to make anyone feel sorry for me or my son. I am sure that many of you have probably gone through a similar thing. It's just that sometimes it feels good when you can share an experience and help at least one person know that they aren't alone. Nobody lives a perfect life, and I can definitely attest to that.
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Sometimes I wish I knew what
it's like to have a "normal" life.....
But then I ask myself how much
fun would that really be?
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Setting Goals

2011-01-16T15:53:00.000-08:00

It's a new year and a wonderful opportunity to set some new goals for yourself and your children. I will focus on family in this post.

May I suggest a few goals for you? They don't require unrealistic expectations and hopefully will give you some ideas for other goals.

General goals:

Goal #1: Spend more quality time with family this year.

Goal #2: Work on at least ONE thing that you would like to improve on. For example, maybe you would like to work on having more patience when your children make mistakes.

Goal #3: Work on getting out of debt. If you have no debt, then work on saving money.

Goal #4: Learn a new skill this year.

More specific goals:

Goal #5: Find out your child's strengths and try to cultivate them this year. Maybe you can focus on one thing.

Goal #6: Be more proactive in your child's education.

Goal #7: Let your child make a list of wishes or dreams and make one of them come true.

Goal #8: Make it a goal to eat more home-cooked meals and learn how to cook more healthy child-friendly dinners.

Goal #9: Learn more about your home state and have a "staycation" one weekend.

Goal #10: Learn to prioritize: family, church, self.

Hope this gives you all some food for thought. Everyone's circumstances are different and your goals should fit the needs of your family. I think it's important to set realistic goals and to write them down. Make a checklist and keep track of your progress.

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No matter how old you are, it's never
too late to learn a new skill or to
change old habits.
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Feelings of Inadequacy

2010-10-04T12:07:00.000-07:00

Have you ever felt like all eyes are on you? Have you ever felt like giving up? Have you ever wondered why you had so much on your plate? Have you ever felt like crawling into bed and crying?

If you answered yes to any of these questions, you are not alone. I wanted you all to know that we are parents who have joined an elite group. We have to work a little harder,a little stronger, and perhaps with a little more discipline than our counterparts. However, the rewards are overwhelmingly bountiful IF you look at the bigger picture. I celebrate small strides and achievements. It is important to do so. I also acknowledge those small miracles that happen all around me. To deny them is equivalent to denying God's presence.

Everyone has moments where they feel like giving up. They feel inadequate. Those feelings of inadequacy are fed by media and judgment from others in the form of looks or comments. You must not compare yourself or your child to anyone else. You are unique and so are they. Even twins are unique and they have the same chromosomal make-up. Therefore, it is fair to say that we all have our own paths and ways of getting to the same destination.

During your journey called "Parenthood" you will find what works for you. Giving up is not an option. Trial and error will become your best friend. I find that even professionals use it. Knowledge is power and with that power comes responsibility. The more you learn the more you will question. The more you question, the more you will add on to what you have learned. You can't deny genetics as one of the leading roles to child's behavior. Sometimes they just come the way they come. The best advice I have for you is to accept those things you can't change, and do everything you can about those things you CAN change! That is the secret to my sanity.

I still consider this blog my therapy. It's important to find an outlet. If writing is not one of your strengths, then find something else you enjoy and do it! Don't let feelings of inadequacy become greater obstacles for you. You are a great parent! You have been entrusted with a very special spirit. This little person that you are raising will one day become an adult. You have NO idea what his/her potential is. There is no way of knowing. All I know is that one day you will look back and see that all your hard work paid off. They are better because of you. In turn, YOU are better because of them.
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Our differences are what
makes the world more
interesting.
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Quick Comebacks 101

2010-10-01T17:03:00.000-07:00

This has been something I've wanted to do for quite some time. Take the following scenario: You're at McDonald's playground trying to have a relaxing lunch while allowing your children to play. Suddenly you hear a child say, "That kid just spit on me." You instinctively know that it's your child so you go over. Sure enough... you were right! The parent gives you that look that is all too familiar and tells you that your child just spit on theirs. What do you say? What do you do?

This is a list of comebacks that you can use in different situations to help explain (not condone or excuse) your special needs child's behavior.

1)"I'm sorry. We are working on (ex: sharing, not biting, etc...). I will have a talk with him." This works great for a lot of situations, especially when you have a toddler or smaller child. Most people who are parents totally get it. No more explanation is needed. You follow up with your child apologizing to the other. Make sure you do this in front of the other parent.

2) "You'll have to excuse him. He's in the autism spectrum. He doesn't communicate very well." This works great when you either have an older child or one that looks older than he is. Some parents may not realize the age of your child and knowing that they are in the autism spectrum will help clear up immaturity issues or inappropriate things for his age. Plus, this will usually open up things for discussion thus giving you a chance to educate another parent about ASD's! (Autism Spectrum Disorders)

3) "Unfortunately, he mimics behavior and a child just did the very same thing to him just a moment ago." This will not only help explain the behavior, but will show the parent that YOUR child was also a victim thus reducing the "mama bear" feelings.

4) "It's hard being a (age) year old trapped in a (older age) year old body." This comes in handy at any age. Parents often don't realize the age of the child and it helps (depending on the situation) to know that.

5) "Thanks for not being judgmental of my child with autism. You have no idea how hard it is." This will make the other parent feel like they should live up to your expectations and perhaps make them more empathetic.

The following are for rude parents:

6) "(Silence)".... My #1 advice for rude parents is to just not say anything at all! Try ignoring at first and if that doesn't work, then just leave the situation.

7) "Are you having a rough day too?" This might tick them off or just might make them laugh.

8) "Have you seen the Temple Grandin movie?" This is good 'cause maybe you can distract and/or change the emphasis onto something else. I would like to think that most people have good intentions.

Some of these I have heard and a few I have used myself. Hope it gives you all some food for thought.

Nobody Does It Better

2010-08-23T11:31:00.000-07:00

Have you ever wondered why you were blessed with the kids you have? Whether you adopted or gave birth to your children, I believe they came to you because YOU were meant to be their mother. I've been told this on numerous occasions, and my testimony concerning this sentiment has grown over the years.

I think about my daughter, for example, who seems to be in perfect health but who is battling Wilson's Disease on a daily basis. If I did not advocate for her, who knows where she would be today. Then there is my oldest who is a genius (literally), but who struggles with social delay. I understand him and accept him for who he is in spite of others. I could go on and on with examples of things, but the fact is that nobody could do it better than you.

Every generation has its challenges. Hopefully each one learns from the previous one and adds knowledge and experience. As the years go on things will only get harder and more challenging. However, knowing that motherhood is a divine calling can help you in many ways. If you're lucky enough to have a living mother, then don't forget you can always call on her for advice. If not, prayer works wonders! It's amazing how much I've been able to help the "professionals" with the help of my Heavenly Father. Never underestimate the power of inspiration.

Lastly, there may come a time when your values are questioned or even challenged. Never give in! Remember that Satan is VERY real and his influence is all around us. Sometimes he comes in the form of media on t.v. or language in a book. He might even come in the form of doubt. Doubt is a very powerful thing. Just remember that TRUE happiness comes only from doing what is right. There are no shorcuts.
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Nobody does it better.... sometimes I
wish someone could.
*************************************

Dealing With "Galzin Indigestion"

2010-07-21T20:03:00.001-07:00

My daughter has been taking Galzin now for a few years. At first we didn't have a single side effect and I was so excited. I did my research and found that many people get stomach upset with this particular drug. I was thankful that my daughter was not among those. Well... NOW we are facing some issues with tummy aches in the morning. I wanted to share what we are doing just in case anyone out there is facing the same issue.

Her dose is three times a day and so we give the morning dose with a little food. I make sure that whatever she eats doesn't have fiber. I read that fiber will basically counteract the medicine. She might eat scrambled eggs or some cheese or lunch meat. She seems to do a lot better when we remember to do this. We have been doing this for months and at her last appointment her liver enzymes were still going down. This is good news!

I have a theory about this. I know that theoretically she takes her meds on an empty stomach, but the morning dose is probably the only one she takes on a truly empty stomach. Therefore, it REALLY is hard on her little tummy. I call it "Galzin indigestion" since she is basically digesting only the Galzin in the morning. I am hopeful that it will get better with time or else she will have to get used to it. So far she is a trooper about taking her medicine. It can be an inconvenience at times, but she handles it very well.
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We call Galzin our magic blue
pill. It has been a miraculous
pharmaceutical invention!
*******************************

The Genetic Factor

2010-07-13T15:30:00.000-07:00

I've had a recent revelation. So far at least half of my husband's siblings or close relatives have a child with a learning disability or in the autism spectrum. This definitely proves (at least in my family) that there is a genetic component.

I found this very interesting article. It was published June 9, 2010. VERY recent information about genetic research. Evidently, they have found dozens of gene mutations implicated in autism. However, if I may quote from the article: "Interestingly, not all the genetic defects were inherited from the child's parents. Rather, they seem to have arisen during fetal development or infancy." This is the part that I KNOW is the environmental "trigger" I have ALWAYS believed in!

Copy and paste the following link and you can read the entire article:

http://www.aolnews.com/health/article/latest-genetic-research-may-help-decode-autism/19509927

After Rain Comes the Rainbow

2010-07-03T17:07:00.000-07:00

It's only when you go through trials that you can appreciate the good things. For example, I have been through some tough times with my #2 and my daughter and so now I feel like I am reaping from all my hard work and dedication as a mother. I appreciate every little thing that I perceive as progress or moving forward.

I had a story to share that I thought was appropriate. You might actually find it inspirational. Yesterday we went to the pool. We usually live at the pool during the summer. It's our favorite place to hang out. The summer break is halfway over and so the kids are starting to fight a little bit more than usual. I guess they are getting tired of being with each other 24/7. I can totally relate.

My older two were playing at the pool with a new toy that I had purchased. It is shaped like a torpedo and you are supposed to pass it under the water. It is relatively heavy and made of a hard rubber. My oldest got the idea to try and skim it over the water so that it would go faster. Well... it definitely worked, but unfortunately it skimmed over the water at top speed right into my #2's nose! Poor guy screamed his head off and blood started to gush out his nose immediately. I panicked but tried to remain calm. The blood would not stop. Luckily for me, my dear friend was with me and she knew the trick to helping it stop. We put a rolled up piece of bandage under his upper lip to put pressure on the vessel. It worked! I also put pressure at the bridge of his nose. It finally stopped bleeding and after about thirty minutes I was able to remove it without worries.

The sweet part of the story was that although they had been fighting for days and morning was no exception... when it came down to it, my #1 was worried sick about his little brother. He would not stop apologizing and kept looking at him and asking if he was okay. Later after we left the pool, he told me in private that it would be okay to let his little brother play on his laptop. (That is a major deal in our household!) Even today... a day later he is still looking out for him. My younger two wanted to go swimming and my #1 said, "No.. we can't go swimming. His nose might bleed." He was genuinely concerned about his well being.

There are two lessons I leared from this:
#1) No matter how much you see your children fight and argue, deep inside they truly love each other. It's at times like this that you see it.

#2) The cautions on toys are there for a reason. On the side of the toy is written in bold: "CAUTION: Do not throw toy above the water or at another person."
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I definitely prefer lessons
learned that don't involve
trips to the emergency room.
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Finding the Right Kind of Help

2010-06-29T10:48:00.000-07:00

When you have a child in the autism spectrum there are many issues that you have to face as a parent. The first, and most important, is the physical AND mental well-being of your child. The physical is probably the most apparent for most parents. However, it seems like the mental or emotional part is more challenging for most.

The fact is that sometimes we need the help from professionals. Not only does the child benefit, but the parents as well. I have a friend who has great health insurance and it covers her child's visits to a Psychologist once a week! I wish I were so lucky! She takes full advantage of it and is able to not only get help for her child, but also gets counseling for herself.

I am extremely lucky to have wonderful support from family and friends. I can pick up the phone right now and I know that they would understand and be a listening ear when I need it. There are many who are not so lucky. The stigma of going to a doctor for help is slowly changing. More and more people are talking openly about it. Maybe it's the media... maybe it's that we're more open-minded. I strongly believe that the main reason is that there are more people now who seek professional counseling. There is nothing wrong with it and it doesn't make you weak. On the contrary, it makes you stronger.

My hope is that whoever is out there struggling with the decision of whether to get help or not, will do so. Don't wait. Don't wait until all hope is gone or you feel like there is no other alternative. You CAN get the support you need. There ARE people out there who understand. I promise you that there is someone out there who has the same values and thought process as you. You just need to seek them out. My friend has to drive over an hour to seek help, but she does it. It definitely puts things in perspective for me.

If you end up with someone you don't like or who doesn't have the same value system you do, then look elsewhere. You don't have to give up. I have seen how persistence pays off. This is definitely something worth fighting for.
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I urge you to check this out:
http://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-pervasive-developmental-disorders/index.shtml
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Wilson's Disease Miracle

2010-06-22T20:23:00.000-07:00

I realized that it has been a long time since I wrote about Wilson's Disease. It comes in cycles since my daughter has to go to Children's Hospital every six months. Every time I go I am reminded about her condition and that her health is such a blessing. I am still optimistic, but unfortunately the doctors have a way of always reminding me that she is still young and that things could change once she is older. I try not to let it get to me.

I have concluded that my daughter is a Wilson's Disease miracle. Everywhere I read that people have all kinds of side effects on their meds and so far she hasn't... except for the occasional upset stomach which seems to be remedied by giving her morning dose with a little food. Her liver enzymes are getting better. They are still not "normal" but they keep going down and are at almost normal range, which is definitely something the doctors were not expecting but were hoping for.

I have concluded that miracles happen every day. However, we have to keep our minds open. God has a silent and reverent way of teaching us. If we would just take the time to get away from all the chaos and commotion in our lives, we can actually feel his presence in our lives. I believe that our daughter is a testament of what can be achieved when we pray and have faith. I have prayed for my daughter, for the doctors, and for myself. I honestly believe that my prayers were answered and that because I acted on my promptings that we are blessed today.
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God answers prayers.
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Do You Have Autism... Or Does Autism Have You?

2010-05-26T09:47:00.001-07:00

There is a consensus among the medical community that since there is no "known cause" for autism then we just need to treat the symptoms. I challenge the medical community to look at it this way: perhaps if we could diagnose a child EARLY on with autism then there could be less symptoms to treat!! Imagine that.... early intervention making a difference. Makes so much sense to parents.... why not the doctors?

When I found out that my child was delayed in speech I took the "bull by the horns" and got therapy. Guess what happened? He learned to speak and communicate better. His social skills improved and there was less issues with behavior.

When I found out that my daughter had Wilson's Disease I took the "bull by the horns" and got treatment. If we would have waited for her to "get sick" then we would have had a totally different prognosis.

I want to challenge all of you out there who have a child with unique circumstances to fight for treatment and services! We have to find out why the symptoms are there and what the triggers are. Don't rely on doctors giving you all the answers. You MUST do the research and do whatever necessary to give your child a fighting chance. There is a reason why you're the parent. There is a reason why your child was sent to you.

The consensus among parents is that they often feel alone and abandoned once they reach the diagnosis stage for their child. That's such a tragedy! There are tons of books, support groups, and blogs out there. Find the ones that best fit your needs. The possibilities are endless.
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When you get the chance, read
about Temple Grandin.
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Alternative Therapies for Autism

2010-05-19T09:25:00.000-07:00

I spoke with my mom today and she mentioned something about an alternative therapy for Autism she heard about on the news. It was the hyperbaric chamber. I found this article online: http://abcnews.go.com/Health/AutismNews/story?id=7070353&page=1 (just copy and paste to view). The results sound very promising!

Another treatment option that I have recently discovered is the ENLISTEN PROGRAM. Although I am not endorsing it, I know of many parents who have used it and have seen results! Here is their official website for more information: http://www.progresscenter.us/home/index.php?option=com_content&view=article&id=15&Itemid=15

There is not a "magic pill" or treatment that will cure autism, but there are numerous treatment options out there. You must have an open mind. Doctors will not tell you about these options because of fear that they will get sued or that they will be seen as "quacks" by their peers. However, more and more medical professionals are seeing the benefits of some of these unconventional treatments.
Take the time and do your own research. You might be surprised at what you find.
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Unfortunately, right now we
can only treat the symptoms
of autism. Perhaps one day
we will find the cause or
the cure. In the meantime
let's join forces and share
what we find. It's a matter
of necessity.
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Let Me Count My Blessings

2010-05-01T09:49:00.000-07:00

Kudos go out to all the single moms and dads out there who do the parenting thing every day by themselves. I honestly don't know how they do it! It's enough to drive me insane having to do it for a few days or a week. I've had friends whose husbands went overseas for deployment in the military, and they had to do it alone for MONTHS! They are among the strongest individuals I know.

Its truly amazing to see how much you are capable of when tested. You have no idea what your limits are until they are tested. Patience, frugality, organizational skills, and ingenuity are among some of the things that I have personally gleaned from having to do things on my own. Sometimes I take it for granted that my husband will do certain things. We truly make a good team. However, when he's gone I am reminded of all the ways he makes things easier for me and the family. The biggest thing I miss when he's gone is the moral support. It can be mentally exhausting raising four busy kids. My oldest is finally calming down and is able to help more, but he still demands a lot of attention and still needs me for validation. He still likes for me to go to the school and never hesitates to give me a hug. I am so glad that the transition into the teenage years has gone so smoothly.

I love my husband more than words can say. He's truly my soul mate. I can't imagine my life any other way.... even with all the crazy things I have to deal with. He has a way of calming me down when I want to lose it. He has a way of helping me put things in perspective. He is truly an example to me of what a humble servant of God should be like. Last, but not least, he makes me feel like the best mom and wife in the world. That's a feat in itself because (as many of you probably can relate) I don't often feel that way.

It is humbling to know that I am among the minority in the world. All around me I see so many couples getting divorced or having difficulty. It often stems from having to deal with different issues associated with having children with special needs. They say that it either brings a couple closer together or else tears them apart. Every obstacle we've had has only brought us closer together and I feel truly blessed for that. I think all couples need time together and we make time for dates and time away from the children. We're blessed to have a built-in babysitter now who does a great job. We also try and make time to pursue our own interests either with other people or on our own. We don't have a secret formula, but we do try to keep a Christ-centered home and marriage. With all the chaos in the world, we've created a safe haven where we can get away from it all and get a head start on eternity.

Inspiration Comes in Crazy Ways

2010-04-20T14:10:00.000-07:00

Sometimes it takes a good book to inspire things in you that you didn't know existed. I have always planned on writing a book about my life experiences and thought it would be therapeutic for me. However, I am going to count this blog as that book for the time being.

I recently finished a book series that literally left me wanting more. I wrote an additional chapter for my own pleasure and shared it with a few people. During that process I realized that I haven't had that outlet in a very long time. I enjoy this blog, but my true passion lies in writing novels. I have written a few in my lifetime but never had the urge to get them published.

The only reason I am even sharing this with all of you reading this is because I am going to use some of my knowledge in genetics, autism, and biology to write my next novel. I think it is going to be so much fun writing it! I've always loved the saying, "when life gives you lemons, make lemonade." Well... in essence I am going to do just that. I am going to use my life experiences and knowledge to create a work that hopefully will inspire others just as the books I recently finished did for me.
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The only limits you have to your
potential is YOU!
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Our Family Spring Camp Out

2010-04-12T13:08:00.000-07:00

We finally did it!!! I couldn't believe it. The last time we tried to get away, I ended up with strep throat. This time, our daughter got bronchitis. However, she pleaded that we go and so we gave it a try. I told my husband that if she looked like she was getting ANY worse then we would pack our bags and cut our losses. We had already booked our cabin and we couldn't get our money back. I figured there was nothing to lose.

We arrived late Friday night and the weather was perfect. It was cool with low humidity. We didn't even have to turn on the AC the entire time we were there! (Yes, our cabin had all of the modern amenities such as AC, bathroom, and kitchen.) That evening was tough getting to sleep. ALL the kids were wired and just wanted to play. The bedroom had two full sized beds and so we divided up the sleeping arrangements right away. We had the younger two sleep in the other bed and the older two slept in the living room area. One slept on the couch and the other slept on the floor. Amazingly, they didn't fight over the couch!

The next morning we all woke up at about the same time. I made sure to bring LOTS of food and so we had a good breakfast. The kids could choose from waffles, oatmeal, poptarts, and other quick meals. Everyone ate very well. The dad took the older two on a hike, while the rest of us stayed and played around the cabin. The cabin was situated close to the lake and there were woods behind us. We walked around and went "exploring" to see what there was. I took lots of good pictures. The cabin itself reminded me a lot of Little House on the Prairie, except it had a screened in front porch with rocking chairs. According to the pamphlet, it was among the original cabins built in 1938. The doors had original hardware on them and the logs looked ancient! I caught myself laying on the bed and just admiring the craftsmanship of the place. It was truly amazing to think that this place was built so long ago.

When the guys returned from their hike we went to Callaway Gardens. It was the perfect time of year to walk among the beautiful gardens and flowers. The butterfly sanctuary was definitely our #4's favorite thing to do while we were there. We had to go back a second time because he was relentless. Our #2 also enjoyed it and tried very hard to stand still and encourage the butterflies to land on him. Unfortunately, there were masses of people there and they were rude and bumped into him and basically made it impossible to stay still. I was so proud of him for not giving up and for not getting frustrated. We did a lot of walking and looking at nature. I thought the kids were going to get bored, but they had a wonderful time. They kept spotting squirrels and wildlife around us. It is so much fun seeing things through a child's eyes.

That evening we decided to roast marshmallows over an open fire outside the cabin. We sent the kids out to look for wood and they had a blast. Our oldest was able to find a lot of smaller twigs (they were the ones to be used for the marshmallow roasting), while my #2 hunted for the larger pieces of wood. My younger two also contributed to the stash of wood. I had envisioned my eldest and husband starting the fire and then the boys basically keeping it alive. It worked out exactly like I planned. I never thought I would see the day when anyone in our family would actually get tired of roasted marshmallows! We went through a bag and a half before I could see everyone a bit lethargic and mellow. It was the perfect ending to a perfect day.

The following morning we had to be out by 11:00am. I thought we would wake up early and be able to do a couple things before heading out, but it didn't work out quite like I planned. We ended up sleeping in and did not get out of bed until almost 9:30am! It took us about an hour to pack up and clean out the cabin. I thought we did good. I woke up with a sore throat and sore back, but other than that I wasn't feeling too bad. Two adults and a four year-old don't fit very well on a double bed. However, somehow.. someway, we managed it and my back sure paid the price!

Our ride home was not too bad. It was an hour and a half drive. We are used to that since we visit grandparents about the same distance. We took the truck so the kids were in the "fun" car. They love the shiny new red extended cabin truck that their dad bought last year. I have to admit that it's a fun car to drive and to ride in. It sure beats my minivan. When we arrived at our house, I walked in and the first thing I noticed was the smell. My sense of smell hasn't been good lately, but there is nothing like the familiar smells of home. I went straight to my room and laid on the bed. The feeling of that familiar comfort and softness of my new pillow was almost enough to make me pass out right then and there. However, my moment was short lived when the "gang" stormed into the room and asked, "What's for lunch?" I took a deep breath and smiled and said, "Let's see what's in the freezer. If not, ya'll are eating PB & J sandwiches."
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A cabin in the woods at Pine Mountain,
Georgia...$100.00/night..........
A weekend without t.v. and nintendo
DS.... priceless!!!
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Good Neighbors

2010-03-31T16:58:00.000-07:00

Today I was just thinking that we are truly blessed to have good neighbors. I know I can depend on them, and they know they can depend on me. Right now my #2 is playing baseball in my neighbor's backyard with a boy his own age and they are having a "ball"...pardon the pun. My daughter has tons of friends in the neighborhood who are in her class! That is really nice.

What makes a good neighbor? That is a good question. I believe a good neighbor is one who knows your name, is friendly, gives you enough space but also feels comfortable enough to approach you, and is not quick to judge. I have met some people who have been very judgemental. I remember one neighbor asking me if I was a member of the Junior League and then avoiding me once she found out I was not. I also recall a neighbor who judged me because of the church I attended. I think those people are missing out on a lot of wonderful experiences because of their narrow-minded thinking.

The most important thing, in my opinion, is to be a good neighbor yourself. I learned a lot after living in our first home about first impressions. There is no way to get that moment back. I also learned that sometimes people seem snobby but they are actually just shy or unsure about the situation. I have learned to step out of my comfort zone and reach out to those in my neighborhood. There are many needs in my street alone and I try to do the Christian thing and help when I can. Our church is good about taking care of our members, but other churches are not eager to help out. It is also important to educate others about my children. Having four children is an issue in itself because many don't want four additional children in their home at one time... which is understandable. I would never do that to anyone, but THEY don't know that. Also, I am not quick to let my children enter ANYONE'S home unless I know them. I guess I am just cautious that way.

Summer is around the corner and we need to reach out to our neighbors in friendship. Make it a point to get to know those with children. Don't hesitate to call them and invite the children over to your house. They don't have to come inside. They could just play outside and get some vitamin D. My point is that don't wait for people to come to you... go to them. I just received a call from my neighbor and they are having such a good time that she wants my #2 to stay over for pizza!!! We've lived here for over seven years and that is the first time he has been over there. Life can be so wonderful when you give it a chance.

Surviving Spring Break In Sickness And In Health

2010-03-19T21:46:00.000-07:00

This Spring Break was definitely a challenging one for me. My husband had to work and so we didn't get a chance to go out of town. However, in hindsight I believe it was probably a blessing because I spent most of the time cleaning up vomit, diarrhea, and taking care of fevers. I can't imagine being on vacation with sick kids. That would be a total nightmare!

We basically had a "staycation" and made the best of it. My oldest, who is thirteen, was the one who was sick most of the time. In a way, that made it easier for me. I took the younger three to places like Pump It Up (an indoor inflatable playground for kids and adults), bowling, and was able to leave my oldest at home to rest. The weather was so nice and we definitely spent some time outside. Getting that Vitamin D sure does something for the soul.

The children actually enjoyed relaxing while watching television and/or playing on their Nintendo DS. They loved not having to go to school and did not complain too much. I guess I must have kept them busy enough that they didn't even notice that we didn't go out of town like most of their friends. Sometimes we parents forget that time is usually what they want. If we fill our time during a vacation with traveling and schedules then it's not TRULY a vacation.

Although it would have been nice to get away this week, I am not going to complain too much. I am going to count my blessings that MY health was fine, and that I was able to handle the sick kids. I am also thankful for being able to spend some quality time with my children. They are growing up before my eyes and one day I won't have my sweet babies at home anymore. My oldest is about to pass me in height and that is surreal.

We are planning on going camping as a family and trying out our new three bedroom tent! It's going to be so fun and the weather should be nice. We are so lucky to live in an area where the cold winters don't last very long. Our Springs are mild and wonderful. They are the perfect camping weather. There is an area that my husband found for us that is only about forty minutes from where we live that should be perfect. I can't wait for my oldest to show off his camping skills with all of his siblings. Plus, I just love smores and burnt marshmallows... YUM!!!
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Our family vacation to be
continued.....
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Holly Robinson Peete Keeping It Real

2010-03-17T20:23:00.000-07:00

http://www.huffingtonpost.com/holly-robinson-peete/shifting-focus-8-facts-ab_b_501183.html

Holly Robinson Peete wrote an awesome article in the Huffington Post about eight things that the media does not cover about autism. I suggest you read it. I am so proud of her for being able to shed light on a lot of issues that I have tried to in my blog! It actually feels good to know that someone out there (in the spotlight) has some of the same concerns I do.
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This little light of
mine.... I'm going to
let it shine.
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Complicated Taste Buds

2010-03-12T14:54:00.000-08:00

Many of you are probably wondering the same thing I am wondering right now. Why do my children all have such different tastes? My oldest is the pickiest of them all right now. My #2 is probably my most exotic one. My daughter is a GREAT eater. My baby is VERY picky! However, the things they like don't make sense. For example, my child who doesn't like ANYTHING (let's call him "Mikey") will eat pistachios, pumpkin seeds, spinach or artichoke dips, yogurt, peanut butter (even crunchy), and many other curious things. My #2 (the one in the autism spectrum) will pour Bay Seasoning into a bowl and eat it. I have caught him eating my Bouillon cubes like candy! I don't exactly understand it. However, I did a little research and found some interesting things. I thought I would share them with you.

Found this article: http://www.medicalnewstoday.com/articles/19702.php
and found it very interesting. It explains the genetic component that comes into play in determining how children's taste buds might be affected. I already knew the social factors. For example, I grew up eating food from Puerto Rico and therefore I have TOTAL different tastes when it comes to food compared to my friends and husband. The genetic component is fascinating to me!

I was speaking to some parents of children with ASD's and they shared some very interesting stories with me. Many of them had children who were very picky eaters. Most of them ate unusual things and had limited menus. For example, one only eats: chicken nuggets (from McDonald's), cheese pizza, and peanut butter. There was another who only eats: broccoli, cheese pizza with NO sauce, cheese quesadillas, and ramen noodles. I asked them how they did it on a daily basis? How did they go out and eat? All of them said, "We rarely go out to eat" or "We just have to cook different things for him." It made me appreciate MY picky eaters. At least I know that they will eat a little more than that. I introduce new foods and for the most part they will attempt to eat it. The foods I KNOW they don't like, I will fix for myself and husband on days I don't have to cook for them. I rarely fix a different meal for my kids. That would be too much work!

In retrospect I realize that MY own taste buds have changed over time. Perhaps my children's will too. I have to hope that when they grow up and mature perhaps they will feel the curiosity to try new things. I hope that they can appreciate their mom's cooking someday.... Just like I appreciate mine.
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Just keep trying. Don't give in.
It might just surprise you the
one day they actually try it and
say, "Mom! This is good!!"
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Tribute to an Angel

2010-03-08T11:56:00.001-08:00

I can't mention her by name.... nor can I even say how I know her. However, I wanted to pay tribute to this "angel" of mine who has taught me more about my #2 than anyone else in the world!

The truth is that she doesn't even realize how much of an impact she has on me and my family. When others criticize about something my #2 has done, she explains the context in which it happened. When others see a child who is being unruly or a bit noisy, she sees someone who has a lot of "spirit". When I get frustrated at his impatience, she sees a child with enthusiasm and an eagerness to be involved. When my child has a "spiritual moment" she is the first one to share it with me. I feel truly blessed to know her and to have her in my life.

The best thing is that she is going to be working with children with special needs. She feels it's her calling in life. I think she's right. She's not even done with school, but she has already had a HUGE impact on many children's lives. I am so excited to know that she will be joining the ranks of those wonderful teachers who get to work with some remarkable children. This angel of mine appreciates their sweet spirits and their brilliant minds. She loves them and expects a lot out of them in return. It's amazing what a child can achieve when you expect it. It's truly amazing!!
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We make a living by what
we get, but we make a life
by what we give.
--Winston Churchill
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Bullying in Schools Need to Stop!

2010-03-02T19:33:00.000-08:00

Recent events have inspired me to write this post. Luckily, and I do mean LUCKILY, this time it wasn't my children involved. It was a dear friend's son who is in Middle School. He is in the autism spectrum and is such a sweet and caring boy. He is big enough to be a linebacker in football, but he wouldn't hurt a fly. He's a big teddy bear. He is dealing with bullying on a daily basis and it's breaking his mother's heart because she feels like she is not getting the support of the school.

We live in a time where some parents don't want to take the time to teach their kids common courtesy and acceptance. In some cases, the parents are worse than the kids. I am so tired of hearing the same old thing, "boys will be boys" or "that's part of Middle School." It doesn't have to be. I think that if parents would just teach their children tolerance and educate them on cultural diversity, then we wouldn't have half the problems we face today. The children are eventually going to grow up to become adults. What kind of adults are we raising?

The dilemma is the following: when is a parent supposed to sit back and let the child deal with his/her own problems and when is a parent supposed to step in and do something? I was faced with a similar situation when MY son attended his first year in Middle School. I was torn because I wanted my son to learn how to stand up for himself. However, I was seeing his self-esteem go downhill very quickly. I eventually visited the school and talked to the Vice Principal. Unfortunately, it didn't change things very much, but I showed my son that I was on his side and that he no longer had to "ignore them" and put up with such abuse. My son and I eventually came up with a game plan and he finished out the year.

My friend has been advised by a professional to "ignore things" and that it was just a normal middle school adjustment thing. She was told that the children were advised to ignore her child. Well... the problem is that they are definitely ignoring him (among other things), which is a form of psychological bullying. Her child came home today and went straight to his room and cried. I can't even imagine what he must be going through. It just breaks my heart. They tease him about his size, his hair, his intelligence, and use tone of voice to degrade him in class. I am concerned that he will reach his limit and "fight" back. Of course, these kids are street smart and so HE will likely get in trouble before anyone else does.

I can't wait for the day when children can go to school and not have to worry about being who they are. I understand that children are not mature and there are some things they will do. However, I also understand that MY children don't bully other kids in school and never have. It's because I have TAUGHT them basic principles such as "Love One Another" and "The Golden Rule", among other things. I have experienced people being critical of the way I raise my children with high standards and morals. They think it's ridiculous that my thirteen year-old boy can't watch certain shows on t.v. or that we won't allow him to go to any school dance until he is fourteen. It's important to stand your ground when it comes to things like that. Otherwise, when bigger and more important "battles" come along then you have the strength and backing to fight them.
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Life lesson #205: sometimes you just need to listen to your gut and dismiss unsolicited advice when it comes to your children..... even the "professionals" don't always have the answers.
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Time for Another H1N1 shot! HUH????

2010-02-26T06:16:00.001-08:00

My children came home from school with yet another pamphlet about H1N1. What gives? Given the fact that the flu season is basically over AND that the H1N1 is basically a milder form of the "seasonal flu"....why the push for the vaccine? Hmmmm??

I wanted to comment on the pamphlet that came home. I thought it was very interesting. It was a "Myth versus Fact" informational pamphlet. Here are excerpts of what they say:
#1) "Myth: The 2009 H1N1 flu vaccine has not been adequately tested so it is not safe or effective. Fact: ...Top doctors and scientists believe the risk of the flu, especially for pregnant women, children, and people with underlying health conditions, is higher than any risk that might come from the 2009 H1N1 vaccine."
**Oh, really??? Is that supposed to make me feel better?

#2) "Myth: The 2009 H1N1 nasal spray flu vaccine is not as effective as the shot (injectable) vaccine. Fact: Based on available data, both vaccines are expected to be effective against 2009 H1N1 flu."
** WHAT available data are they talking about????? They are getting the "data" as we speak! It hasn't been out long enough to gather enough data (in my humble opinion, that is).

#3) "Myth: If I receive the nasal spray 2009 H1N1 flu vaccine, I can pass the virus on to other people and infect them. Fact: Because the virus is weakened, it is very unlikely to infect others or cause them to have flu symptoms."
** It is "very unlikely" that you can pass it on to others? That basically says (to me) that it COULD happen and they can't say for sure it can't.

In a normal, healthy adult or child there is no reason why the H1N1 vaccine should be shoved down our throats! The way I see it, they are just trying to get rid of the vaccines they made and/or make some profit in the process. After reading the information, it validated my thought process about the whole thing. They basically "jumped the gun" on the manufacturing of the vaccine and even though it did not reach pandemic proportions, they are trying to still scare the public into thinking that it's a "dangerous" flu still lurking around us. It is milder than the seasonal flu and I think that if anything...they should be making sure that the elderly and such get the seasonal flu shot because MORE people have died from that than the H1N1 flu. Of course, THIS gal will not be getting any "mercury injections" anytime soon.
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It's not hard to get all the
facts and make an informed
decision.
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ABA Therapy Available in Montgomery, Alabama

2010-02-24T06:26:00.000-08:00

I just wanted to post this short message to let everyone know that there is an ABA Therapist in Montgomery. Her formal title is: Behavior Analyst. She came and spoke to us during our PA meeting at Churchill and really impressed everyone there. More than anything, I loved her spirit. She had a very positive attitude when she answered parents' questions and had some REAL advice and practical suggestions. Unfortunately, our area is in need of more. She can't do it all by herself and she struggles with trying to meet the needs of our area. She explained that many people leave our area once they are done with their schooling.

If you are a student or are in the process of deciding what route to take in the Special Education realm.... please consider this option. We need more people in this profession. Evidently, it's a good career and our area is in need.

An Amazing Mind Willing to Share

2010-02-19T21:14:00.000-08:00

A recent night at scouts reminded me about how brilliant the minds of children in the autism spectrum are. It also prompted me to share the following experience with you because I thought it would definitely amuse many of you (especially those who know my children).

My #2 never seizes to amaze me. The other day he was explaining what he knew in the subject of mathematics. He asked me what the highest number I could count to was. I told him that I could count to a trillion. He then proceeded to ask me what the highest number was. I told him I didn't know. He told me that it was "infinity". I vaguely remembered that from college. I told him how proud I was that he knew that. He then asked me if I knew what the lowest number was. Again, I told him I didn't know. He told me it was "negative infinity" and looked at me with such a wide grin... the kind that goes from ear to ear. It was so cute. I was definitely impressed. When he gets in this kind of mood I like to test his knowledge on various subjects so I decided to ask him about aerodynamics. I asked him how a plane stays up in the air. My father is a former helicopter pilot and he explained things to him a couple years ago and even showed him how to fly a flight simulator program on the computer. Needless to say, my #2 remembered a lot! He drew a wing and then explained lift to me and even showed how the wind current goes over a CURVED wing! I was floored. I have always known how smart he is, but I guess I didn't realize how much he retains and how eager he is to share his knowledge with me. I am going to encourage him to explain more things to me in the future. It was so much fun.
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Take time to listen to your
children. You might be amazed
at what you hear.
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Riding the Autism Train... Are You on Board?

2010-02-10T18:50:00.000-08:00

A recent conversation with my mom prompted me to write this post. I can't explain it, but I feel like a ton of bricks have been lifted off my shoulders. It's because now I KNOW for a surety that she's on board. I think I can compare the experience like an awakening of sorts. It's rather amazing, actually.

There are certain things that people can't imagine. One thing is motherhood. There is no way to explain it.... you have to experience it. The same goes for autism. It's a whole different world. When you know someone who has autism the world is no longer the same and it also changes you. I know, personally, I have gained more patience and more understanding. I have also grown to LOVE children with disabilities. Although my child's condition is not as severe as Down Syndrome or other children with low functioning autism, I look at those children and I understand them. I think I even appreciate them. It's hard to explain. One reason might be that my religion teaches that children with such disabilities are such special spirits that they cannot sin and therefore don't need to be baptized. They come to earth to experience a mortal body and that is all they need to progress in the next life. I think that is such an awesome teaching of our church.

If you are a friend, a family member, or an acquaintance of someone who has a child with autism then you have a glimpse of what I am talking about. However, you don't really KNOW what it's like to live day to day. You don't see the tantrums, the meltdowns, the overstimulation, or frustration that comes with autism. My child is harder on himself than anyone I know. When I see others belittling him or not taking notice of his progress it really hurts. His behavior in public has improved dramatically, but it's because we work with him on a daily basis. He is in a special school where we sacrifice a very large tuition to make sure he gets the best help. We sacrifice going on family trips or getting expensive clothes, for example, in order to pay the expenses that come with autism. I am here to tell you that it's not just the tuition for the school, but it's also doctor bills that aren't covered by insurance, psychologist testing, speech therapy when he was younger, occupational therapy that we could not afford for very long, AND the medication!

What does it mean to be "on board" with someone who is struggling with a child who has autism? 1) Don't judge. 2) Learn as much about it as you can. 3)Be understanding and empathetic. 4)Remember that autism doesn't define who the child is, but rather explains the behavior. 5)Don't always assume that the child is at fault... sometimes they can't stand up for themselves. 6)Know that the parents and the child are harder on themselves than meets the eye. 7) Don't forget to praise once in a while when appropriate....it gets REALLY old just hearing negative comments.

I can't stress enough the fact that things aren't always what they seem. Case and point: I can remember one day when my #2 was horrible! I think I was near my breaking point. He had done almost everything you could think of. I had spanked him, grounded him. Nothing seemed to work. (This was before we had a diagnosis.) Well... the week gradually got better and we actually ended up having a decent week. So, I decided as positive reinforcement we would go to Stevie B's Pizza and have a family night. Our rule was the kids had to eat before they could go and play in the arcade. As soon as my #2 finished, he was eager to go into the arcade. We went in and there was a grandma with her perfect granddaughter playing. Of course, my #2 was so excited to play, but I had to get change. I went to the machine and the grandma was standing in line to get tokens. My #2 proceeded to stand by the machine as we waited our turn. However, he doesn't know personal space and he evidently got a little too close and it bothered the grandma. I could tell and so I told him to move and to stand by me. I then looked at the grandma and said, "He's just excited...he's only a kid." (I was hoping she would be understanding.) Her response was, "No.... YOU just need to be a parent!!" My jaw just hit the floor. I couldn't believe what she had said. There are many things I could have told her. However, I just ignored her and avoided her the rest of the time we were there. That is one of the best examples I can share with you to show you a glimpse of what people just don't know and how prejudging someone can really hurt. Little did she know that parenting is ALL I do 24/7 and that I have to pick my battles, and if I reprimanded my child for something he has no control over then I would not be doing my job as his mother.
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I am the tank engine that provides
the momentum to pull the heavy loads,
but if the cars don't follow then I
might as well pull with all my might
til kingdom come 'cause they aren't
going to budge.
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The Sibling Effect

2010-02-01T11:47:00.000-08:00

So much focus is given to the children with problems that often the siblings are left feeling ignored, unloved, and needing attention. This often leads to the kids "acting out" or sometimes even mimicking the behavior in hopes that THEY too will get attention. Remember that negative attention is attention nonetheless. That is something that psychologists have drilled into my head over the years.

I am just as guilty as anyone else out there. I have ignored my daughter, for example, on numerous occasions since she rarely gives us trouble and she is almost the "perfect" child in every way. She does well in school, has lots of friends, and is a very loving and sweet child. My oldest used to give us so much trouble when he was younger, that NOW we often ignore him as well since he is thirteen and rarely gives us trouble as well.... especially compared to how it was when he was younger. That leaves only two others that demand a lot of my attention at the moment. I try very hard to give it to them, but it's hard sometimes to do it without doing it at the expense of others. I was thinking about that the other day and it prompted me to write this entry. I am going to call it the "Sibling Effect" and it definitely covers a lot more than it sounds.

The Sibling Effect is the way others treat or perceive your children without knowing them, but only knowing one or more siblings. It also refers to the way siblings are treated by parents. This can be positive or negative. For example, your oldest child has a teacher and the experience is negative. The sibling has the same teacher years later, but the negative reputation is already there in spite of the fact that they are two completely different individuals. They look the same and possibly have some of the same mannerisms and that just makes things more complicated. However, another way of looking at it is that the parent will often have certain expectations even though there are two completely different individuals involved. This also works in the opposite manner. If your oldest child is well-behaved and a good kid then people are going to assume that future children will be the same. The parent will often expect good behavior and then doesn't understand why the child is misbehaving or acting so differently. This leads to frustration and often misguided efforts to use the same kind of discipline,etc.. on the child.

It's an unfair thing, but it happens all the time. The problem especially arises when you have a child with special needs. It often isolates the siblings because children are so cruel. It's hard to change a child's reputation especially among other children. I have a dear friend whose child is in the autism spectrum and she can't allow him to go to a friend's house unsupervised. She has a younger daughter who is typical and often asks if she can go play at a friend's house. It's so hard for her since she has to constantly explain why rules differ for the children. Her son often gets angry and frustrated because he can't play with other children, while his younger sister is allowed. However, the worst part is that he is seldom asked to play by other children and so he will often invite himself. He has been shunned and teased by children in his neighborhood on numerous occasions. It's almost too much for the mother to bear.

I can only speak from experience, but after my son's diagnosis I almost held my breath with my next two children. It was almost like I expected the worst but hoped for the best. I said a lot of prayers and tried to remain optimistic. When my daughter had speech delay I almost felt like giving up! I didn't want to go through it all again.... it seemed so unfair. However, I am so glad that I didn't give up. I worked really hard with her and today she is doing great. My youngest has speech delay as well and I thought to myself, "here we go again..." However, THIS time I have the knowledge and experience I have acquired over the years and that gives me an advantage. I have to remind myself that he is an individual and there are NO limits to his potential.

I feel so protective of my children, but especially my second child. He has been diagnosed with PDD (Pervasive Developmental Disorder), Tourette's (also known as "ticks"), and ADHD. One can only imagine the complications in trying to get him enough social interaction. He's an awesome kid and very intelligent. However, he lacks a lot of social skills and other kids his age don't understand him. Actually, many ADULTS don't understand him. I am just so thankful for the school he attends because he has made so many friends and the parents and teachers adore him! One thing that I worry about is the fact that my youngest looks and acts SO much like him. I have seen the "Sibling Effect" on numerous occasions and don't really know what to do about it. I feel like the only thing I CAN do is just educate others. They need to know that he is not like his brother. At the moment his only challenge is he is speech delayed. Of course with that comes other issues, but he is progressing and doing so well. I see a lot of his sister in him. I am quite optimistic about his future. He is speaking better than any of his siblings at the same age. That in itself gives me a lot of hope.

My hope is that someone will read this post and either #1: think twice about prejudging a child based on knowledge of a sibling or #2: know that they aren't alone and that others are aware of the problem AND that something can be done about it. We don't need to sit back and ignore something like this. The way a child is treated will shape the kind of person he/she will become. It doesn't matter if the child is typical or special-needs.... it's all the same.
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The worst thing you can do to a child
is ignore him.... but worse yet is to
prejudge him and form opinions before
even getting to know him.
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Knowing Your Rights

2010-01-18T18:37:00.001-08:00

What are your rights as a parent in regards to services and help for your child as they get older? That was a question that was posed today by a mother of a teenager. She only has three years before her child is 18 years old. I haven't even thought about that since #1: my child is only 9 at the moment and #2: I am optimistic that my child won't need any services by then. However, it is better to be prepared just in case.

The first thing that comes to mind is SSI or social security benefits. However, I think it is based on household income so I am not sure how that works. Here are a few links with information:
http://www.child-autism-parent-cafe.com/social-security.html

http://www.autism-world.com/index.php/2007/10/14/does-children-with-autism-qualify-for-disability-benefits/

Sometimes you might need legal help. I found the following site and although I am not endorsing them or even familiar with the firm, I thought I would post it so that you can see some of the points they make on the site: http://www.socialsecuritylawfirms.com/resources/social-security/social-security-disability-coverage/child-autism.htm

I will try and do some extensive research and post my findings in the near future.

Importance of Continuing Education

2010-01-11T13:57:00.000-08:00

Professionals such as my husband have what they call continuing education and it's required to maintain their careers. When I was a Medical Technologist we had to have certain amount of hours to maintain current on issues concerning the lab. Well... motherhood is one of the toughest jobs in the world. I feel strongly that moms (as well as dads) should also keep "current" on issues concerning their children.

Seminars, workshops, and various other events occur all the time in our city. Sometimes you have to keep your eyes and ears open, but they are available (usually free of charge) for parents. The city actually has a budget for education and it includes education for parents. Everyone knows that raising children has it challenges, but raising children with challenges poses a totally different kind of situation. I have seen so many people get divorced due to the stress and the financial burden that usually accompanies. It's no wonder that cities devote so much effort into educating parents.

I urge you to find out when/where seminars are offered. They are usually at churches, schools, and libraries. The more support we get, the better off we are. Don't ever feel like you have to do it alone. There are so many people who are too proud to ask for help or to accept it. I have to say that I've made some great contacts going to seminars and support groups. There is always strength in numbers.
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A little help never hurts.
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Met a Remarkable Man Yesterday

2010-01-08T10:39:00.000-08:00

I had to share this with you all because it just goes to show you that you can't judge someone without getting to know them first. I am so glad that I usually give people the benefit of the doubt.

The other day I was working out at the gym and a sweet gray-haired guy approached me about the Alabama Bowl game. He was so excited and he went on and on about the game. I had seen him before running around the neighborhood and could tell there was something "off" with him. When he talked he had a speech impediment and stuttered. He almost sounded like a stereotypical mentally retarded individual. It didn't help that English was definitely not his first language either. Normally, most women would have either walked away or felt uncomfortable... However, I began to listen to him and he was very articulate and his thought process was definitely normal. He just didn't SOUND normal and his motor skills were definitely impaired. After speaking to him he stopped and then said, "I am so sorry I sound like this... It's hard for me to speak. I have what the doctors call TBI (traumatic brain injury) and I am working hard to get my body back to normal. It has been a year now and I work every day to get stronger. I run two miles, I then get a little rest and then do jumping jacks to work on my motor skills. I spend most of the day exercising my body and mind. Up until recently I could barely talk and my balance was not very good. I live with my brother and he thinks I work too hard. I am not going to give up though. I have hope that one day I will be normal again. I have spoken to other individuals and it took them TWO years to get to where I am. That gives me so much hope."
I felt like crying after he explained that to me. It definitely made me look at myself and how sometimes we judge people subconsciously. It also made me think about society and how probably he must be treated on a daily basis. Do people treat him with respect? I sure hope so. Do people listen to him when he talks or just ignore him? I can only imagine.

I am so fortunate to have a healthy body and mind. I am thankful for my health and I treasure every day that I can work out and do what I want to do. I know that others are not so lucky and that it can all change in a blink of an eye.
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A healthy body and mind are worth
more than all the money in the world.
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Does My Story Sound Familiar?

2009-12-26T18:05:00.000-08:00

I have met so many mothers with the same story to tell. I feel very fortunate to have this forum in which to voice my story and some of those I feel important to share. It's no accident that I have met some wonderful mothers along the way and they have taught me more than I can say. My hope has always been that I would be able to reach just ONE person. I felt that my mission would be accomplished if even one person was helped by my struggles. However, I have exceeded my expectations and I have reached dozens of mothers who are struggling and have no other place to go. In the process I have also learned so much and recently I had one of those "light bulb" moments. The following story could be YOUR story. Nonetheless it is a true story.

We take it for granted that we live in the United States of America. It's truly a land of freedom and hope. As long as we work hard and try our best, we can expect great things. I recently spoke with a mother who is from a foreign country where children with disabilities are tolerated, at best. She explained that they don't offer services in the schools and basically treat them like any other child. If they don't get it... they just don't get it. There is no "special" treatment at all! Parents are often embarrassed and have no other place to turn to for help. It's a fact of life that she doesn't want to even consider for herself. Right now she is here where things are going great, and she can potentially receive any and all services her child needs. However, that could all change in a blink of an eye. It's too much for her to bear. It's truly too much for ME to even think about.

No matter how much we may complain about the quality of services or the amount of services offered in our area, at least we have the opportunity to receive some help for our children. We have invaluable resources at our fingertips. Many services are free of charge and it doesn't take a lot of effort to receive them, in most instances. For the most part, our society does not shun others with disabilities. I see young men and women with disabilities working in various capacities and living independent lives. There is also HOPE in our country for parents. That is such a big deal. Without hope there would not be advances in treatments and services. Parents would just give up and probably resort to putting their children in asylums or possibly abandoning them at an orphanage doorstep. That is a reality in some countries.

As we celebrate the holidays, let us all give thanks for the blessings we have in the U.S. Let us not forget the people who have given up their lives for the freedoms and rights we have today. Let us not forget the miles we have traveled and the miles we have yet to travel. Let us not forget the past... lest we repeat it. As we begin the year 2010, I pray that we keep the spirit of Christmas in our hearts and that we try to always think of others before ourselves. I have learned that small things truly make a difference in others' lives. It doesn't have to be miraculous things. Sometimes people just need someone who will listen. We don't always have all the answers. It's amazing how much power a hug or a smile can have. Begin the new year with a positive attitude and you will see amazing things happen in your life.
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God bless you and yours.
Merry Christmas and Happy New Year!
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New Year's Resolution Suggestion

2009-12-02T18:33:00.000-08:00

I have a suggestion for a "New Year's Resolution" for all you moms out there. I want you to have an open mind about this and really try to do it. My suggestion is that you try to complete ONE project that you have always wanted to do. For example, I have always wanted to get my music that I have composed over the years onto paper. I sometimes worry that I will either forget it or else lose my muse as the years go on. It's sort of like a legacy of sorts that I want to leave behind. I figure it might be something that my grandkids can play and know that their grandmother enjoyed playing.

Everyone has dreams and goals that they want to accomplish. I urge you to figure out what YOUR dream is and go for it in 2010! Sometimes we spend so much time worrying and caring for our children that we forget about our OWN dreams. I think it's the best gift you could give yourself and your kids.
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Just do it!!
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Holiday Survival Tips

2009-11-23T15:22:00.000-08:00

With the holidays coming up I thought it would be beneficial to discuss how to survive the holidays. We're not just talking about the gifts either. I think the holidays are wonderful, but they also bring many factors that are often difficult to deal with. For example, diet is often changed. A lot of sugar is consumed compared to other times and sometimes the basics of nutrition are ignored.

Let's begin with dealing with off-days. Try to maintain some kind of routine, whatever that may be. It's also important that you don't forget to feed your children. Remember that they often have a snack before lunch at school and we might not even think about that. My daughter actually has snack AFTER lunch. She is accustomed to eating when she gets home from school. If you notice your children acting a little "hyper" or irritable then it might mean that they are hungry.

Next, I want to talk about gifts. Maybe it's because I have four children, but I think that it's important that children understand the reason for the season. They don't need a hundred presents to feel loved. As a matter of fact, I know some families that tell their children that Santa only has room for one present for each child and then the rest are from the parents. That makes it a lot easier to explain when they don't have the funds to get them what they want. In MY family, we don't do "wish lists". I just talk to my children and I KNOW what they want. As a matter of fact, there are things out there that they don't even KNOW about.

The last thing is spending time with your family. Sometimes spending time with extended family can be overwhelming for everyone.... but especially the children. Try to be mindful of things that may not seem such a big deal to you, but that could make things stressful. For example, talk to your children about rules at other people's homes. Explain the importance of using their manners and remembering their please and thank you's. You may want your children to bring a special toy or something to do in case there is not much to do where they are going. That usually works for us. If you have to travel a long distance, try bringing blankets and pillows. Those things seem to help relax the kids and comes in handy when they fall asleep in the car on the way home.

The holidays don't have to be stressful. Just remember the reason for the season and try not to get caught up the marketing of the holidays. There is no reason to max out credit cards and over-extend yourself in time as well. The most valuable gift you can give yourself and others is the gift of peace and joy. That is something that money can't buy.
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Jesus is the reason for the Season.
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It's So Much Work to be Your Friend

2009-11-11T10:57:00.000-08:00

"It's So Much Work to be Your Friend" is the latest video I have watched by Rick Lavoie. I had the opportunity to watch it at the last PA meeting at our children's school. It was enlightening and informative and everything in between. I wanted to share some of the things that I learned and hopefully can help many of you with your own children.

Communication is basically the key to social interaction. There are numerous things that we take for granted such as body language, cultural differences, personal space, among other things. Rick explained how deficits in any or all of these areas can have a huge impact on the type of adult your child will grow up to be. Friends are not a luxury... they are a necessity. That is why it is crucial to make sure that our children learn how to make friends, and more importantly how to keep them.

He talked about so many things that my head is about to explode right now. However, I will try and discuss a few of the things that might be pertinent to many of you reading this... since, I feel it's pertinent to me. One of the things he talked about was the fact that children don't have the same opportunities to make friends like we did. They don't have as much "free time" at school and then they get home and have homework. By the time they can play they end up on the computer or watching t.v. He pointed out how "play dates" are the thing now and that the majority of the time the kids will end up playing video games and not say a single word to one another. He suggested making the first play date in a neutral territory such as a playground. He also suggested that it never be three kids since ultimately YOUR child will be the one left out.

Lavoie gave a rather interesting statistic. He said that communication is 93% NONVERBAL! I was surprised to hear this, but it makes sense once you think about it. Facial expressions, hand gestures, body language, just to name a few are some of the things that say more than words. Some kids have a difficult time understanding the nonverbal cues that people make. This is critical in understanding why sometimes kids with learning disabilities have social problems and difficulty making friends. For example, Lavoie told a story about a time when he had some REALLY good news to tell his wife and he looked all over the school for her (she worked with him). When he finally found her, she was in the dining hall talking to another teacher. He said that the first thing he noticed was the somber look on their faces and right away he knew something was wrong. Instead of telling his wife the good news, he decided to approach them cautiously and ask what was wrong. He found out that the other teacher had just gotten the news that someone close to her had passed away. He told us this story and then asked, "how many of YOUR kids would have just gone up to us and told us the good news without even realizing that it was inappropriate?" I looked at my husband and nodded because that described our #2 very well.

Personal space is another issue. He demonstrated how we Americans have a need for our space. Some of the examples he gave were rather humorous, but true. For example, he mentioned how in a restaurant our table is OUR table. If anyone else tried to sit there or put something on our table then we would definitely not like it. Another example is sitting on a plane. The tray is ours and if someone was to put their drink on it then that would be invading our space. The last example is the most common thing that people mention.... the elevator. We avoid eye contact and NEVER touch another person if we can help it. It all depends on the situation, but there is a social understanding that we will behave in certain ways under certain conditions. What is appropriate in one situation would be totally inappropriate in another. How do you teach this to a child? He said to take every opportunity to talk to your children and to teach them. We take it for granted that we have decades of experience. We can pass that on to our children.

Social contracts are also very complex. For example, if a man is walking down a street and a lady is approaching him then he might nod or say hello but he will keep his distance. If he were to approach her and touch her that would be totally inappropriate. I see children with autism or other learning disabilities who will hug strangers out of the blue. They might stare without realizing it. These things could be misinterpreted. Lavoie also gave an example of a child who went to a vending machine and couldn't make up his mind. He stood there for several minutes when all of a sudden a lady came up behind him and waited. She waited for almost five minutes and then left in a huff. The "social contract" in this situation would have been to let the lady go ahead while he made up his mind, but he totally did not get it. Parents can teach their kids by example, but more importantly, we should verbally discuss these things as well. We need to take advantage of every opportunity and not take it for granted that our children will "just get it" because they might not.

Voice dynamics is yet one of the more complex things for some children to grasp. Lavoie gave examples of how just a simple increase in volume of a word in a sentence can change the meaning. I see this with my OWN child who sometimes will sound rather disrespectful without even realizing it. I have to remind him all the time. He doesn't understand that his tone and volume affect the meaning of his words. At times I feel like he's a parrot and will mimic what he hears. He will sometimes repeat what I say. I have to remind myself that I can take these situations and transform them into a learning experience. He's still so young and I have so much I need to teach him.

The last thing I wanted to share was story he closed with. He said that in all his years teaching at his school for children with special needs, the number one issue that was top priority for parents and students alike was not academics and getting into a prestigious college. It was the basic need of friendship. He asked a group of teenagers if they had the choice between doing excellent in academics or not ever having any problems socially for the rest of their school years, what would they choose? Inevitably they all chose the latter. We cannot underestimate the power of friendship for a child. It will mold, shape, and guide them to be the adults they will become.

If you have the opportunity to see ANY of Lavoie's videos I encourage you to do so. He always puts everything in perspective and gives parents simple tools that can accomplish so much!

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This is the link if you'd like to purchase the video. I feel blessed to have a school that will offer these videos to the parents so that we don't have to purchase them.
http://www.shoppbs.org/product/index.jsp?productId=2082686
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Reality Check Time

2009-11-02T15:10:00.000-08:00

**The following information may not be appropriate for young readers. I apologize if some of the content seems offensive, but this is information that might save your child's life.**

I just wanted to share with those of you who can relate how important it is to remember that there is always light at the end of the tunnel. No matter how dark things may get or how hectic your life may seem to be it is always a matter of time before things eventually get better. However, it is so important to never let your guard down. That is the main reason for this post.

No matter how safe you think your neighborhood is or how wonderful your neighbors might seem, it is a fact that the majority of crimes against children are done by someone they KNOW! Does this mean you have to be paranoid? Absolutely not. Does this mean you need to be vigilant? You BETTER be!!! Unfortunately, we live in a time when you can't just assume that other families or friends have the same standards you do. I lived in a cul de sac in my previous home and thought I knew all my neighbors very well. It was a shock to me when one morning we saw the police at our neighbor's house and the parents were yelling and screaming at one another. I found out later that they did drugs. I actually let me children participate in an Easter Egg hunt at their house just a few months prior to that incident! My point is that you just never know.

There are numerous things you can do to help your children. First, you need to teach them about personal space and what is appropriate touch.... and more importantly, what is inappropriate touch. If there is a "Stranger Danger" or other similar course then I would encourage you to enroll your child at least for a short period of time. It is never too early to learn those vital skills. I know what you are probably thinking right now, "I won't let my child out of my sight before they are school aged." I hate to even say this, but your child can be "groomed" before your eyes and you wouldn't even know it. "Grooming" refers to the process by which a sex predator will touch a child and basically get them used to his touch. This process also includes testing the child to see how he might react. I know this is difficult to hear, but I feel it's critical for all of you to understand.

The second way you can help your child is by keeping open lines of communication. This will become even MORE critical as they get older. My parents taught me this concept very well. I felt like I could talk to them about ANYTHING! I have tried to continue that with my own children. An important point I want to make right now is that it is important for you to initiate conversation with your child. You might need to ask point blank if something inappropriate has happened... especially if those "mommy" instincts kick in and you know something is not quite right. It might not be a bad idea to periodically have family night lessons about this concept. You can have scenarios and act them out to show what to do in certain situations. The important thing is to not make it scary. You definitely don't want your child to be afraid. You DO want them to be cautious and to be mindful of things that they need to tell you. ALWAYS... and I mean ALWAYS stress the fact that they will NEVER EVER get in trouble for telling you. Many times the adult predator might say that they will get in trouble if they tell.

The last thing I want to talk about is what do you do when your child comes to you with something as awful as what we have talked about. Your first instinct will be to kill or strangle the offender. First, congratulate and say how proud you are that they came to you. Make sure they know that it wasn't their fault. Next, get as much information as you can. You might want to get a doll and tell your child to show you exactly what happened. It will be difficult, but you need as much specific detail about what happened since you don't want to have any question that it was an inappropriate act. Most children will not make things like that up. In special needs children the predator will often count on the fact that perhaps the parents or other adults will not take the accusations seriously. That makes those children more vulnerable.

All you have to do is turn on the nightly news and it won't be long before you hear about a child being abducted or about a pervert who has done horrible things. The reality is that the parents of these kids never thought it could happen to them. I have personal experience about how you can never be too careful. A young military man with children of his own may seem like the last person you would suspect of being a pedophile, but I knew such a person. He went to church every Sunday and had children at his house every day. Don't be fooled by appearances. Trust your instincts. A little prayer doesn't hurt either.
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http://www.missingkids.com/missingkids/servlet/PublicHomeServlet?LanguageCountry=en_US
For more information check out this website.
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Medical Insurance Nightmare Update

2009-10-26T13:48:00.000-07:00

I have some exciting news for all of you who have been following my medical insurance dilemma. For those of you who are not familiar with it... this is a short synopsis:

In April 2008 my entire family got tested for the ATP7B gene since my daughter had been recently diagnosed with Wilson's Disease in February 2008. This is a very rare genetic test and so I had no idea what to expect. The results were good...we were all carriers and did not have the defect. However, my nightmare began when I received the bill for each of the six members of my family. The bills were in the thousands for each test. I just knew that there was a billing error. Since we couldn't afford to pay the bills and then have reimbursement our bills went to collections. The lab blamed the insurance company and the insurance company kept blaming the lab. I spent countless hours on the phone with each trying to solve the mix-up. However, it seemed to get worse with time. I was just about to give up when one day I was taking a shower and thought to myself, "why don't I just call the lab and find out how much the test is supposed to cost?" I did just that! To make a looooong story short, I was able to find out that indeed the testing was not supposed to be as much as they billed me and the lady was able to take our bills out of collections. I spent another three months calling up the insurance company and the billing office at the lab to make sure that our bills were not placed in collections once again.

The update is as follows: our bills came in today and our balance is (drum roll please......) ZERO!!!! I am so glad that I never gave up. I knew that the time I spent on the phone with the representatives would pay off. In the meantime, I got a Case Manager for my daughter and I will write more about that later. This person will basically be my advocate if anything like this happens in the future. The way things are looking right now with the health care mess.... I will definitely need an advocate.
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Let us pray that the government does
not make things worse than they already
are.
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Autism Checklist and Warning Signs

2009-10-25T14:37:00.000-07:00

There isn't a formal checklist for autism. In fact, there are many things that physicians will actually disagree about. For example, many parents will say that their children have digestive issues or issues with food and doctors will often dismiss those symptoms.

I would like to refer you all to my 8/10/09 post: "When Should I Worry?" In that post I talk about the warning signs and go into detail about them. I think it's important to have a good screening tool. Hopefully that will help a lot of you. Of course, this is not a exact science. I always tell mothers to go with their gut... that is usually the best screening tool we have.

I have compiled a checklist using information I have learned from experience as well as professionals I have dealt with in the past thirteen years. The main thing to remember is that this is mainly a screening tool and should not be confused with a diagnostic tool. The only person who can definitively tell you if your child has autism or is in the spectrum is a clinical psychologist or psychiatrist combined with neurological evaluation and behavioral specialist. We are basically talking about a team of doctors.

First Signs of Trouble:
1) The child is not progressing at the same rate as other children in any of the following areas: speech, motor skills, socially, or emotionally.

2) You notice odd behavior such as repetitive motions or sounds.

3) There is no or little eye contact.

4) Walking is unusual. For example, he might walk on tiptoes or have an unusual gait.

5) The child has an unusual sleep pattern.

6) The child is sensitive to sounds, textures, and is easily overstimulated.

Those are all things that are early warning signs. If your child also has ADD or ADHD then there are other things I could add to the list. For the sake of not being confusing, I thought it would be easier to focus on autism. Unfortunately, many children with autism or in the spectrum will also have ADD or ADHD.

Progressive Warning Signs:
1)There is a regression in speech, social skills, or emotional health. A regression might also mean that they do not progress beyond a certain level but still retain what they have learned. That is still considered "regression."

2)At this point the child has had to learn how to cope so they might cover their ears to shield themselves against auditory stimulation. This is textbook for many kids with autism.

3)Stimming is more apparent. This means you might see a child humming or making other sounds. I found this list in a very informative website: http://www.autism-in-the-christian-home.com/stimming.html
"This behavior may involve any or all of the senses in various degrees in different individuals. Several examples are listed below.

Visual – staring at lights, blinking, gazing at fingers, lining up objects

Auditory – tapping fingers, snapping fingers, grunting, humming

Smell – smelling objects, sniffing people

Taste – licking objects, placing objects in mouth

Tactile – scratching, clapping, feeling objects nail biting, hair twisting, toe-walking

Vestibular – rocking, spinning, jumping, pacing

Proprioception – teeth grinding, pacing, jumping"
This is the most misunderstood of all the symptoms and is the most difficult to control. Stimming is the child's way of dealing with certain situations. It might mean the child is happy or it might mean that the child is frustrated or sad.

4)Language patterns are irregular. The child might sound like a "little professor" and/or sort of robotic in language without the usual inflection that most kids have. This is one of the most interesting of all the signs. It's not necessarily the content of what they say, but the way they say it.

5)You will notice that they don't make friends easily or else they consider everyone their friend. They don't understand social cues and therefore it's difficult for them to engage in a typical activity or conversation and make those bonds that kids usually make. A parent will try their hardest to put the child in situations where there are kids, but the child will remain by himself or else avoid being around the group as a whole. This is often difficult for the parent since they don't want their child to be alone, but it's often what the child wants and sometimes needs.

I want to stress that there is a BROAD spectrum for autism. There are some kids that will appear to get better with age.... while others will get progressively worse. The spectrum includes Asperger's, PDD(Pervasive Developmental Disorder), and some are looking at the ADD/ADHD link as well. However, just because your child is diagnosed with autism doesn't mean that's the end. Early intervention is the key. The future is not written in stone. The diagnosis will help to understand the child and help with the symptoms.
********************************************
I would encourage everyone to visit:
www.autismspeaks.org
It is full of valuable information and
lots of checklists and warning signs to look
for in all ages of children.
********************************************

The Stigma of Special Education

2009-10-20T11:13:00.000-07:00

I thought I would once again talk about this VERY important topic. It has come up a few times with other mothers I have spoken with, and it's time to educate everyone about it!

In the "old days" when a child was considered "mentally retarded" they were either placed in an asylum or another special school away from the mainstream children. Parents were ashamed and often left no choice but to give up their children to the state to take care of. It's true that we have come a LONG way... but we still have a long way to go. It breaks my heart when I see a child who needs intervention and the parents choose to ignore it because of their fears of stigma attached to labels of "special education." Luckily, mentally retarded is not used very often these days. Instead they use words such as "learning disabled" or "delayed". The reason that "mentally retarded" is not used anymore is because educators know NOW that just because a child learns differently does not mean they are not intelligent or capable of learning.

I have been blessed with children who are of superior intelligence. However, I can definitely relate to the fear of stigma. I am just thankful that I got over it! I recently spoke with a mother who is of foreign descent and she had concerns over her son's speech and social skills. Her son is in my #4's preschool class. I spoke with her last year and unfortunately she did have her child evaluated. I tried to make the point that the sooner her son got help, the better the outcome. She just did not want to admit that her child needed intervention. She used the excuse that her son was bilingual and that they spoke a different language at home. She thought, at the time, that her son's delay was only temporary. NOW...it's a year later and her son's condition is not improving. She called me and asked me what she should do and I advised her of who to call and how to go about getting an evaluation. I could sense her frustration and pain. I went through the exact same thing! I tried to reassure her and told her that her son might only need speech therapy for a couple years. Perhaps he would not even qualify by the time he started school. He is currently 3 years old and has about two years before kindergarten. That gives him PLENTY of time to make some major progress.

I have spoken of warning signs for autism and things to look out for. If I had a checklist for all the things that I have spoken about I am afraid that this boy would have many checks on the list. The other day I stayed after dropping off my son and spoke to this mother. I watched her son as he proceeded to cover his ears during "circle time" and my mind started to race! I asked her about it and she said that he did that often. I don't know if she understood the significance of that or not, but then she proceeded to tell me about other behaviors he exhibits at home. She told me that he often will be fixated with inclines and play with cars or whatever toy and "go up and down....up and down" for extended periods of time. She also told me that he will often tell people to be quiet. He doesn't like noise and it seems to bother him. He has recently began to throw toys out of frustration. (That is definitely a sign he needs speech therapy for sure!) I spoke with the teacher and she told me that he has sensory integration issues (fancy wording meaning that he doesn't like certain textures, etc...). She also expressed her concerns about his social interaction with other kids. It breaks my heart to hear all these things because I KNOW for a surety that this child has some form of autism but speech won't fix it!

The fact is that the public school system is not equipped to deal with children who are like this little boy. They can offer speech therapy and occupational therapy... beyond that it is up to the parent. As far as I can tell, this boy is extremely bright! He is already reading and he's not even four! The main thing to do at this point is to offer all the services that they offer and watch him very closely. IF speech therapy doesn't "fix" his issues then this mom will need to have him evaluated by psychologists and other mental health professionals. It might not hurt to see a neurologist as well. There is a clinic at Children's Hospital that has a good reputation. As I see it... time is of the essence! I had MY #4 evaluated by a neurologist at the age of two just to make sure. Parents MUST act quickly and be proactive. They cannot rely on others for the progress of their children. I have learned that the hard way and I am determined to get the message out to everyone and anyone who will listen.
**************************
http://www.cspwal.com/forms/eireferralform.pdf
(that is the referral form for Alabama Early Intervention)
The only problem is that if the child is already 3 years old then they won't "qualify" for early intervention. They would automatically be in the public school system.
http://www.mps.k12.al.us/index.php/departments/special-education/introduction
(this is the link for the Montgomery Public School Special Education Services)
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My Dog Doesn't Bite... But My Child Sure Does!

2009-10-19T08:25:00.000-07:00

My #2 is nine years old now. He has ADHD, PDD, and Tourette's. At first glance you really can't tell there is anything wrong with him. However, after just a few minutes you will be able to spot a lot of energy and then odd behavior and sounds. He doesn't always "misbehave" and I am so thankful for that. He is a very sweet and smart child. I truly enjoy spending time with him.

The reason I decided to post this was that I feel like sometimes we make some progress only to find out that there are other issues that we did not know about. It's almost like we take one step forward and two steps back. It's so hard to explain. Those of you who have been in my shoes understand exactly what I mean... it's the unpredictable and irrational behaviors that sometimes pop out of nowhere.

First things first.... we decided to finally get a diagnosis for our #2. He has always been labeled as "PDD-NOS" and I thought that was such a generic label. I decided to take him to a psychologist a few months back before school started and they FINALLY diagnosed him with the three aforementioned labels. I have to admit that I am not big on labels. However, as I have mentioned in the past it is important to do that in order to establish an ILP (Individualized Learning Program). If we don't know what his weaknesses are then there is no way we can help him with his strengths. For example, if we would have known about his Tourette's then perhaps his Kindergarten teacher might have been able to better understand his sounds during naptime and grunting and coughing sounds he made during instructional time. She MIGHT have been a little more understanding.

We started medication before school started. Right now he is taking 18 mg of Concerta and it works great for him. I can tell when it is working and when it has worn off or we forget to give it to him. The difference is amazing! I have been hesitant to start him on any drugs because of what we went through with my oldest. However, my #2 has had NO side-effects or any other issues on this drug. As a matter of fact, his ticks are controlled (even though I have read numerous sources that say the drug sometimes aggravates the ticks). I am convinced that the reason the drug works for him is that it's a low dose and we waited for him to be a little older before giving it to him so he is better able to communicate with us. That is so critical!

We recently adopted a nine month-old puppy and it has been a wonderful thing for our family. I am excited about the opportunity to teach all my children responsibility and how to treat an animal. So far it has been a positive experience. However, I am beginning to wonder if some of the animal's behavior is not rubbing off on my kids. For example, my youngest has decided to go outside to go potty! This includes going #2....which adds another disgusting element to the equation since the dog will find it and eat it!! Also, my #2 began biting other children a few weeks ago. That is a new behavior that we had not had to deal with since he was a toddler. What posseses a nine year-old to bite? The circumstances have led me to believe that perhaps he was overstimulated and very frustrated at that moment. However that is no consolation to the parents of the victims. Also, it's definitely very embarrassing to me as a mother.... especially when I get the dreaded phone call. How in the world do you explain that one?

I have definitely grown thicker skin over the years. However, the fact is that it's never easy when your child inflicts pain on others. I remember when my oldest came home with bite marks on his shoulder from daycare. I was so upset!! NOW... here I am on the other end. It definitely puts things into perspective. You just never know what your child is capable of. That is why it's so important to keep an open mind when it comes to a child's behavior. It's so easy to jump to conclusions. I am sure that the parents thought my child was either being a bully or wanting to hurt their child on purpose. They didn't realize that my child was not thinking before he acted. He was being impulsive and I tried to explain my child's challenges and that we were trying to stay on top of things. I reassured them that he was reprimanded and to NEVER hesitate to let me know if it happened again. I think it's so important for parents to know that I am not one of those parents who makes excuses for my child. However, I also feel it's more important for them to know that my child is not typical and that the circumstances are a little different. I try to educate people every opportunity that I can. They don't really know me and they don't know my child. That is definitely a big obstacle. I just see it as a challenge. I am just thankful for the spirit of kindness that these parents showed me. I didn't feel like they were putting blame on me as a parent. They accepted my apology and reassured me that their children were okay.

I will continue to advocate for my children and their challenges. I know that these trials I have now will become blessings for others in the future. I have already had opportunities to help others who are going through similar things. In a future post I will share some of those stories with you. I think they are important to share so that we ALL can learn from them.
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God bless you all!!
*******************

Confessions of a Stressed Out Mom

2009-10-09T06:53:00.001-07:00

1)I found another use for the stress ball.... try throwing it at your child. It's far more effective and it won't leave any marks.
2)If your children refuse to take a bath or shower then just spray them with Febreeze... They will smell SOOOOO refreshing!
3)It's harder for a teacher to be mad at your child after receiving a present. We do it frequently!
4)We often eat our dinners in reverse and skip our "dessert".
5)Try using your expired coupons at Chick Fil-A. They actually accept them!
6)I don't stress out about my youngest losing his shoes at church anymore.... We just conveniently forget to put them on every Sunday.
7)I love uniforms. My children can wear them overnight and the following day and no one will ever know....definitely saves time in the mornings! (Don't forget the Febreeze.)
8)I definitely believe in "group baths" and "group showers" for that matter.
9)I love onions and my kids do not... so I lie all the time about the ingredients in my dishes. They usually believe me.
10)Last but not least, even though motherhood is stressful I have to admit that I would not have it any other way.

Autism Rate Has Increased to 1:100

2009-10-05T13:39:00.000-07:00

http://www.usatoday.com/news/health/2009-10-05-autism-increase_N.htm

The statistics don't lie. The rate of autism is on the rise. How many will it take before the government takes action? Do they not realize that these "children" with autism will become adults with autism? Do they not realize how much money this epidemic will cost ALL of us?

Although there seems to be a disagreement as to the CAUSE of autism, the fact is that the rate of autism in the United States is steadily increasing. The article states that the rate of autism has increased to 1:100.... however, it is actually more like 1:95. I have a very important question for you all to think about. What IS autism? I believe there is a disagreement among the medical community AND parents as to what autism truly is. Some parents believe that autism is vaccine injury. There are others who believe that children are born with the gene for autism but there are environmental triggers. There are yet others who believe that if a child is exposed to enough toxins then their bodies cannot get rid of them and they end up with autism or other disorders in the spectrum. MY thought is the following: they are ALL right!!

I have written enough about my thoughts on the matter. However, I wanted to make something clear. I don't quit reading books or looking up information. Therefore, my knowledge is constantly building and expanding. Right now I am reading a book entitled: Healing and Preventing Autism written by Jenny McCarthy and Dr. Jerry Kartzinel. I have to admit that honestly I am not a fan of Jenny McCarthy, but I am SO thankful for all that she has done to expose the truth about vaccine safety. I am also SO thankful for all the doctors who have come forward and admitted to the world that there are things beyond what is taught in medical school. I believe that there are numerous treatment options now available to parents with autism because of Jenny and doctors who have supported her cause. The book is FULL of information and I will definitely write about it in a future post.
**************************************
The statistics are alarming. However,
what concerns me most is the way it is
being ignored.
**************************************

Some Food for Thought

2009-09-19T09:15:00.000-07:00

I consider myself an advocate for many causes. However, one thing that joins us all together is the fact that if we didn't live in this country and had the freedoms that we enjoy, our lives would be totally different. I NEVER take that for granted. Another thing to consider is the fact that many of you reading this have medical insurance. Although it might not be the best, at least we have it. Many in this country do not.

I have been doing some reading and research lately about the health care crisis and what is happening to our country. Although this blog focuses mainly on the health and care of children, I thought this post would be more than appropriate.

The following are some questions that we should all ask ourselves. If you haven't thought about these issues then I would encourage you to do so.
1) How do you feel about our health care in the United States?
2) Does your state representative KNOW how you feel about what is happening?
3) Do you know your rights concerning health insurance and coverage for your family?
4) Is it fair that the people who work in Congress have wonderful coverage and their choices concerning health care don't affect them?
5) Would it bother you to find out how much money is being spent on frivolous projects and research.... knowing that YOU are paying for it?
6) How much money is spent on illegal immigrants? (The answer will shock you!) Check out the answer at: http://kevincolby.com/2008/07/27/the-cost-of-illegal-immigrants-to-the-american-taxpayer/
7) What would you do if your child needed surgery and the hospital denied it due to insurance not covering it?
8) Can a medical insurance company legally drop your coverage without cause?
9) Who pays the bill for those people who don't have insurance or who don't have the money to pay their medical bills?

I could keep going, but I hope this gives you all some food for thought. I promise you that the more you find out about what is happening, the angrier you will become. There is so much corruption and lack of common sense in Washington. It's unreal how blinded we have become as a nation. We need to wake up and see what is happening. We've become a nation where the few or minority have the stronger voice. Case in point: I know for a fact that the majority of the children in my daughter's school are Christian and yet they can't have "Christmas Parties" since that would offend someone. They end up having to change the name to "Holiday Party" and they can not be centered around Christmas. What???!!
*********************************************
If we sit back and let others decide our fate
then we don't have a right to complain. Now
is the time to decide where you stand and do
something about it.
*********************************************

The H1N1 Flu Vaccine Dilemma

2009-09-18T11:46:00.000-07:00

http://www.cbsnews.com/video/watch/?id=5237185n

This is the link to a very interesting CBS investigative report concerning the H1N1 vaccine. I love it when a doctor has the same thought process I do concerning vaccines. It's so refreshing to hear someone in the medical community admit the truth about vaccines.

Enjoy!!

The Truth About Friendship

2009-09-15T10:58:00.000-07:00

This post was inspired by my Relief Society lesson we had last Sunday. It was taught by one of my friends and I learned so much from it. I wanted to share some of my thoughts on friendship and how important it is to me.

The truth about friends is that you have no control over who you "click" with and who you don't. I know we can be more outgoing and try to put ourselves in situations where we can make friends, but in the end it's something far deeper and spiritual that guides our paths and joins us with those we ultimately call our friends. There is usually common ground and common values that help us become closer. I feel that the autism community is one of those that is so much like my LDS community. Everyone I have met is a wonderful mother, friend, and is struggling to find answers and do what is right. It's amazing how much in common I have with people who have children with autism or any other special needs. It immediately links us together and we can talk for hours... and often do. It's true what they say: you don't know what it's like until you walk in someone else's shoes. I used to be very judgmental and criticized parents who had children who were unruly or disrespectful. I still don't like it, but now I have a better understanding of what is REALLY going on in the mind of the child. Most of the time it's not his/her fault.

A true friend will stick with you no matter what. I've had friends that I love dearly and felt very close to, drift away since my son's diagnosis. I know that part of it is that they just don't understand. However, I have made some awesome new friends in the past couple years and I wouldn't trade them for the world!!! We understand one another and don't feel we need to apologize all the time for our children. It's understood that our kids will behave inappropriately at times and we just deal with it in our own way. I love the fact that I can have friends who can give me counsel without being condescending or judgmental. I KNOW that they have walked where I have walked and so that means so much to me.

It's not easy being a good friend sometimes. I used to get my feelings hurt very easily, but have grown a rather thick skin in the past few years. It still hurts when I hear negative comments or when I see those looks of disapproval, but I don't let it get to me in the same way. I believe that there is good in everyone. No one wakes up each day and thinks to themselves, "who am I going to hurt today?" I know I am not perfect, and I am sure that I have hurt someone's feelings without even realizing it. I consider myself to be a considerate person, but I am only human. That is the biggest lesson I have learned about others. I am taught to love everyone at church and I honestly say that I do. However, I have learned to surround myself with uplifting and positive people. I have many friends, but only a handful of very close friends. I can only hope and pray that I am as a good a friend to them as they are to me.
********************************************
I hope you all have good friends who support
and uplift your soul. A good friend is like
a good bra: lifts you when you're down and
is always close to your heart.
********************************************

Looking Forward with Wilson's Disease

2009-09-05T14:30:00.001-07:00

There is no reason to dwell on what happened in the past. The only thing I can do right now is look at the future. I could feel a lot of resentment towards the doctors who dismissed my daughter's illness or my worries. I could also feel a lot of anger towards the pediatricians who tried to make me feel like I was crazy. However, I have learned so much from my experiences and I have helped so many people that I almost look at it all as a big blessing in my life.

I have to share a recent experience I had with a wonderful doctor. His office is located in Florida (another state away from us), but he was referred to me by someone I trust very much. I called the office and they told me that he was out of the country and would not be back for another month. Last week, I checked my phone messages and he actually called me HIMSELF and left a very sweet message apologizing for not being able to contact me earlier. I almost fainted! I returned his call, but he was not in his office and his nurse said she would leave him a message to call me back. Of course, in the back of my mind I thought he MIGHT call me the next day or by the end of the week at best. Well... he called me on his way home that very same day!! We talked for about fifteen minutes and he was the sweetest and warmest doctor I have ever talked to. He listened to me and told me his recommendations for Sarah. He told me that he had actually called the Mayo clinic to inquire about the genetic testing that was done just to make sure that the diagnosis was correct!! He confirmed and validated the results to me. That made me feel so much better because I have had some doubts in the back of my mind concerning that very thing.

After telling him some background information concerning what I went through with previous doctors, he told me that unfortunately my story was not unusual. He said that basically most parents have gone through the same thing. He also told me that the neurologist who tested my daughter for copper and other various tests that others don't normally test for was "one in a million" and had a "head on his shoulders". I wish ALL doctors tested for those things. Some of the tests could explain so many disorders! It's amazing what blood can tell a doctor if you just give it a chance. I worked in the laboratory and I can tell you from personal experience that laboratory tests can sometimes tell the doctor more than the symptoms and physical exams... as a matter of fact, some doctors RELY HEAVILY on the laboratory testing. In many situations it's just a matter of what insurance will cover. That is so sad.

One thing I want to make sure to clear up is that the doctor explained chelation to me. I have been very scared about that and was unwilling to even consider it with my daughter. However, chelation is evidently the only way to get rid of the copper that has accumulated in the body. The zinc acetate is just a way to keep the body from building up any more copper in the body, but it doesn't get rid of what was there before. We are going to discuss that in depth at her first appointment with this doctor. I still feel that I wouldn't want to do something like chelation with doctors who don't know much about it. In other words, I don't want my daughter to be a guinea pig. At least with this doctor, he has treated almost ten pediatric patients so far and that is more than any other in my area. I want to discuss the side-effects and possible scenarios that could occur. After reading Dr. George Brewer's book, I was under the impression that zinc therapy was the first line of therapy for "asymptomatic" patients. That is something I definitely want to discuss with him. Is my daughter technically "asymptomatic" or not? I also want to know how to find out how much copper she has accumulated.

I have a dear friend who is not of my faith, but she reminded me that this experience is definitely a faith-building experience and a testimony that God does answer prayers. It's definitely a testament of my faith. I continue to rely on spiritual guidance and pray that the doctors do the same.
*************************
Looking forward sometimes
means looking back and
realizing that you can
either agonize over
decisions made or learn
from those experiences.
**************************

Dealing With Insurance and Billing Update

2009-08-26T10:53:00.000-07:00

I posted about my issues with my insurance company not wanting to cover the genetic testing we had to do for our family a long time ago. I also explained how I had to call numerous times and try to figure out what was happening. Our entire family had to be tested for the ATP7B gene mutation due to my daughter having Wilson's Disease. This was done in April of last year. It has now been over a year and we still have not resolved our billing issues with the laboratory. The insurance company pointed their fingers at the billing department at the lab, and the lab pointed their fingers at the insurance company.

The biggest piece of advice I can give you is this: MAKE SURE TO ALWAYS CHECK YOUR INSURANCE CLAIM STATEMENTS!!!! Don't take it for granted that things will be taken care of on their own. I have learned so much in these past few months and one thing I wish I could have changed is that I had paid attention to the statements that came in the mail.... and read the fine print. You are given a limited time to take care of the amount due before you have no recourse to appeal it. Our insurance company gives us 90 days. Believe me, it sounds like a long time, but it isn't.

What do you need to look out for? Make sure that the information is correct. For example, did you REALLY go to Dr. Smith on July 18th and have laboratory work done? Also, do the amounts charged make sense? If the amounts processed seem outrageous you should definitely check. That is what happened in my case. I saw the amount the testing cost and since I worked in a lab I knew that it looked like too much. Of course, I had NO idea how much I was overbilled. Two days ago, I found out that my testing should have cost me $450 PER person total (who knows how much they REALLY charged the hospital). They were trying to bill me for between $10,000 and $13,000 PER person!! I knew that typically hospitals will charge a bit more to the patients to make up for the ones who don't pay. However, this was definitely a case where there was a billing error. I was able to finally reach someone who could tell me how much the testing was supposed to cost me. I was so relieved to finally have an answer! The biggest issue I had was that they were sending my bills to collections and it would potentially harm my good credit. That was definitely my motivation through all of this.

I am not quite ready to exhale, but at least I don't feel like I have a ton of bricks on my shoulders at the moment. I have to share one little tidbit with you all. I want to share what happened and hopefully inspire you to listen to that inner voice that we all tend to ignore at times. This is what happened: I was in the shower and all of a sudden I had the thought, "why don't you call the lab and see if someone can give you the amount that the test cost and how much you should have been billed for each test?" The funny part about that is that I tried numerous times to find out that very thing but was always unsuccessful. Perhaps it was the way I asked the person or maybe it was the person I spoke with. I will never know. However, as soon as I could I called the laboratory that drew the blood (not the ones who actually performed it since they had already told me they couldn't tell me since I wasn't their "client") and asked if there was anyone who could tell me how much a certain laboratory test that my doctor ordered would cost me. I was transferred to the supervisor and she actually called the Mayo Clinic and found out the exact amount the test was supposed to cost. It literally took only five minutes!!! She then told me that I had called the right person and not to worry. The first thing she would do was to get all my bills out of collections. She would then notify the right people and get my bill corrected. I was so relieved! It was definitely an answer to my prayers.

I think we are all blessed with this inner voice inside of us. We just need to listen to it. Sometimes it comes in a whisper. Other times it might come as an email from a dear friend. You just never know how your prayers are answered. Don't be discouraged. Sometimes things take longer than we would like. However, if we are patient and persevere good things do come. It's definitely true what they say, "Good things come to those who wait."
****************************************
I've recently learned that the insurance
company is not always the guilty ones
when it comes to billing problems.
****************************************

Galzin Therapy for Wilson's Disease

2009-08-25T13:53:00.000-07:00

Our daughter who is 6 years old was not on any drug therapy until recently. The only thing doctors suggested for us was liver biopsy and consequent chelation therapy if the numbers were high enough. The problem with this mode of treatment is that they are basically waiting for the patient to get "sick" before treating. This is the equivalent of a doctor waiting for a diabetic to lose their kidney function before starting insulin. Luckily, as I have said numerous times, I have been surrounded by guardian angels who have guided me through the process of keeping my daughter well. I am so thankful that I did not ignore the warnings and counsel that were given to me.

The main reason for this post was to update you all on how my daughter is doing on this new treatment and to offer some advice. First of all, she is taking 25 mg. of Galzin (Zinc Acetate) three times a day. The biggest challenge for us is making sure that her stomach is empty. She has a big appetite and usually eats mini-meals throughout the day. Also, when school started that presented YET another challenge for us. How did I ensure that she took her medicine on time and on an empty stomach when they have snack time at about the time she is supposed to take her medicine? I went to the school and talked to the nurse. She was so sweet and gave me a great idea. She told me that I should send a special water bottle with her to school and that way she could sip water during snack time. This was also a good way to ensure that she didn't drink tap water. We found out recently that the copper level in our water is higher than it should be for her. We try to give her only filtered water at home.

I want to stress an important point right now. While we were trying to get a diagnosis years ago and the doctors ignored my concerns, they did a random urine copper on my daughter and the results were normal. A year later they did the 24 hour urine copper and again it was normal (in the 40's range). However, right before she started taking the zinc acetate her 24 hour urine copper was 68 which is a little higher than normal. NOW, after only a month of medication, she is in the normal range. Her latest value was 54. We are so excited! I urge parents to not ignore their instincts. I did not know as much THEN as I know NOW. After reading Dr. Brewer's book I understand that in asymptomatic patients the results can often be misleading. EARLY INTERVENTION is the key. You MUST start treatment right away. The longer you wait, the more damage there will be. The more damage there is, the harder it will be for the patient to recover. It is possible to recover if caught early enough. It is possible for a patient with Wilson's Disease to live a long and healthy life. The biggest mistake anyone can make is to have a "wait and see" attitude with Wilson's.

So far, my daughter has had no side-effects on Galzin and it is definitely working for her. I am so glad we were able to avoid the chelation therapy and liver biopsy. I am still trying to learn as much as I can about how the 24 hour urine copper range is used to monitor Galzin. According to Dr. George Brewer, the "normal level of urine copper of 20-50 micrograms per 24 hours is not reached for many years, if it is reached at all, because of the extensive body loading of copper in Wilson's disease." I guess a value of 54 is not too bad after just a month of treatment. That is very reassuring for me.
**********************************
Don't delay....start today!!!!!!!
**********************************

I Can't Be The Only One

2009-08-21T19:59:00.000-07:00

There are three questions I want answered at this very moment:
#1: Am I the only one who cares about what books my child reads at school?
#2: Am I the only one who cares about what movies my child watches at school?
#3: Am I the only one who feels that values and morals are going down the drain?

When my oldest went to middle school he had to read a few books that were frankly offensive and vulgar. I was shocked at the subject matter and the language. I already have discussed in previous posts how tough middle school can be and adding that issue was enough to give me an ulcer! However, parents have NO say in the books that are in the curriculum and what they watch at school. Parents have NO control over any of the subjects they decide to add or delete. It's no wonder more and more parents are deciding to home school. It definitely makes sense to me.

I have recently learned that high school is not any different. The books they read do not get any better and the subject matter can be gruesome and offensive. I don't want to offend anyone, but I feel that in order to get my message across you have to read what I am referring to. The following is a poem that a movie entitled "Then There Were None" (an Agatha Christie novel) was based on. This is how it goes:

Ten little Indian boys went out to dine;
One chocked his self and then there were nine.
Nine Indian boys sat up very late;
One overslept himself then there were eight.
Eight Indian boys traveling in Devon;
One said he'd stay there then there were seven.
Seven Indian boys chopping up sticks;
One chopped himself in halves then there were six.
Six Indian boys playing with a hive;
A bumble-bee stung one then there were five.
Five Indian boys going in for law;
One got in Chancery then there were four.
Four Indian boys going out to sea;
A red herring swallowed one then there were three.
Three Indian boys walking in the zoo;
A big bear hugged one then there were two.
Two Indian boys sitting in the sun;
One got all frizzled up then there was one.
One Indian boy left all alone;
He went and hanged himself and then there were none

The summer reading list included the book: "And Then There Were None" by Agatha Christie. http://www.bookrags.com/notes/none/SUM.html This website has the synopsis of the book. It is a very interesting story and I, as an adult, would probably enjoy reading it. However, why do 9th graders need to read this book? What does this plot teach children? They see and hear enough violence on the television and nightly news. School should be a place where they can get away from those things. The book is basically about a man who invites eight strangers to an island where they are killed one by one using the methods in the poem. In the end they ALL die. Evidently, all eight strangers had killed someone and the man who kills everyone wanted justice and he arranged the death of all the people. Again... I ask you what is the purpose of reading this novel?

I guess the reason I am so upset about the situation is that they no longer allow prayer in school. I bet if my child decided to bring his scriptures and read them in class there would probably be something "wrong" with that. I think there is definitely something wrong with that!! What kind of future can we expect if we are teaching our children to become desensitized to violence and gore? Where are the values and morals being taught? I do MY part at home. However, I also expect schools to maintain a much higher standard and I believe that parents should have the right to decide what their children can read or watch in school. Parents cannot remain complacent about what is happening in schools. We have to voice our opinions and let our concerns be heard. If we let the government have control over our children's education without our input, then we might as well let government into our homes and raise our children.... thus having control over our children's minds and lives.
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Don't be afraid to call and talk to
the principal or director of your
school and voice your opinion.
If enough people do that.... perhaps
change is possible. If we sit back
and just let it happen then we might
just one day "wake up" and see that
it's too late.
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When Life Gives You Lemons....

2009-08-17T20:20:00.000-07:00

I found out a very good piece of information today that I wanted to share with all of you out there who have children with special needs. If you have any plans to go to Disney in Florida then this information could save you a lot of time, hassle, and more importantly... your sanity!

I met a lady today who has a child with autism. She told me that when they went to Disney this summer they went directly to the visitor's center and showed them the paperwork with her son's diagnosis. The people at Disney then gave the family 4 passes that would enable them to go directly to the front of the line and not have to wait!! Yes... you heard correctly.... NO WAIT! I asked her if this was for every ride in the park and she said it was. I was so excited!!! Last November we went to Disney and we had to wait for hours at every ride. Even with the "Fastpass" it was a challenge getting into the rides because a lot of the rides we wanted to ride did not have that option. We ended up having to split up a few times to coordinate the tickets.

Hey....I've always said that when life gives you lemons, make lemonade. Why not? I have definitely deserved SOME relief in my life. I think I hear Disney calling my name!
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M-I-C-K-E-Y.....M-O-U-S-E.......
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Karate Therapy?

2009-08-15T21:00:00.000-07:00

Karate is definitely not on the top of many parent's list as a "therapy" for their child. Why would you expose your child to fighting and aggression? Well.... I am about to debunk a bunch of myths concerning karate and to tell you all that you might just want to try karate. It might surprise you what YOU and your child will learn.

Myth #1: Karate will encourage my child to be aggressive.
Actually karate is considered an "art" and when they start off they will learn moves and "forms" that are associated with the specific martial art they are learning. Your child will probably be disappointed that they won't be actually fighting for quite some time. The main point they will learn is that karate is for protection and not for starting fights. They will learn that the best way to "win" a fight is to avoid one in the first place.

Myth #2: Karate is a very dangerous sport.
Karate is safer than any other sport out there. My daughter got hurt while playing indoor soccer. The main reason was that she didn't have any protection except on her shins. When your child starts to fight in tournaments, it will be when they are in the higher belts and they will be wearing all the appropriate protective gear.

Myth #3: Girls wouldn't benefit from taking karate.
This is so wrong! I think girls should be the first ones to take karate. When I was 12 years old I came home with a black eye from a bully hurting me on the bus. The following day my dad enrolled me in karate. I gained so much confidence and I was never bullied again! Girls have to learn how to protect themselves. They will not only learn vital skills in karate, but gain the self-confidence they need so that they never have to feel like a victim.

Myth #4: My child has ADHD and so he wouldn't be able to handle karate.
The fact is that karate can HELP kids with ADHD. In karate they learn how to focus and pay attention. The repetition and structure of karate is also good for a lot of kids with attention deficits. I have read in numerous sources that they encourage parents to enroll their children in karate to help deal with ADHD. I believe it's definitely something that should be explored.

Of course, I am a bit biased since I have taken karate and now have my children enrolled in it. I have already seen the changes in my children since the first day they started. I am looking forward to seeing some great things happen in the next few months. They look forward to going each day and I have to admit that I enjoy it too! I have only been twice and have learned so much. It is definitely empowering and I hope to stay with it for as long as my children do. It's fun going to classes together. They definitely enjoy seeing their mommy out there on the mat too.

The life lessons that children learn from karate are too numerous to count. There are many programs out there and I encourage you to look at all of them. They are all very different and some are more structured and regimented than others. You know your child and their limitations. I enrolled my children in a very loving, caring, and nurturing environment. It's one of the few places in the country that teaches "Stranger Danger" and is endorsed by the city police department. I love the instructors and the parents are all very supportive. I definitely feel it's the right place for MY kids. I feel blessed to have found this program. It's worth every penny!
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Don't take MY word for it... try it out and
see for yourself.
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When Do I Need to Worry?

2009-08-10T08:06:00.000-07:00

I feel the need to post this at this time since school is back in session. There are so many things that parents worry about. Some of those things are legitimate concerns, while others stem from unrealistic expectations that society and sometimes teachers put on them. Let me preface the following by saying that these "milestones" are intended for children who are past the age of toddlerhood. I have made numerous posts in the past about what to look out for in babies and toddlers. However, toddlers are too young to categorize. It has been my experience that with toddlers there is such a wide range of development that it would take a book to cover all the milestones. Also, the milestones are so vague that they can span months and some overlap. It's definitely more complex.

Social Milestones:
Not all children are going to be social butterflies. Some kids are naturally shy and they don't want to be the center of attention. This could EASILY be misinterpreted as "issues" that a child may not have. For example, if your child is shy and afraid to speak in public then reading out loud in a classroom environment may not work for her. This might lead the teacher to think that the child has a reading problem when in fact it's a shyness problem. My point here is that you know your child. If your gut feeling tells you that he/she is not happy then you definitely need to get testing and confirmation. Otherwise, don't worry about your child and instead help the situation by being the supportive and loving parent you are. These are SOME of the early signs of problems in young children that need to be checked out:
not wanting to be touched or reacting to touch in a very negative manner, being sensitive to sounds or colors, not wanting to eat but a VERY limited diet, playing with toys in a unique fashion such as always lining them up or being fixated on a particular part of a toy versus playing with it in an appropriate manner, acting depressed the majority of the time, and my favorite....numerous temper tantrums.

Physical Milestones:
Not all children are going to grow up the same. My children are nicknamed "Amazon kids" and they are tall for their age. I have a friend whose kids are all very tiny until they reach preteen years and then they grow like weeds. As long as your child is steadily growing and gaining weight then you have nothing to worry about. If you take your child to a physician regularly they check both weight and height. They usually will plot the results onto a graph and if there are any problems they will usually let the parents know. If you have any concerns then speak up at your child's appointment. These are a few of the things I would be concerned about:
if your child has ANY yellowing or changes in skin color, any changes in bowel movements for an extended period of time, bloating of stomach, if your child is not getting enough sleep, walking on tip toes, poor coordination that leads to frequent accidents, and ANY regression in speech or motor skills.

Emotional Milestones:
This is the most complex of all issues. How do you determine what is "normal" emotional health in a kid? In MY opinion, it all depends on circumstances. If a child is living in a normal environment with no major changes and two loving parents then you would expect normal development. However, major changes such as the death of a loved one or moving frequently from one place to another can cause certain behaviors that you would not ordinarily see in most kids. Everyone deals with stress in their own way. This is especially true with children. As a parent, you need to provide every opportunity for your child to develop emotionally. It is important for your child to have friends. It is also important for your child to know they are loved and to gain self-confidence which will in turn equal self-worth. These are a few things I would worry about:
preferring isolation from friends and/or family, hurting themselves and/or others, not able to express love, not able to make and more importantly KEEP friends, doesn't seem to worry about consequences, lack of empathy, poor or no eye contact, irrational fears, and not being able to cope with any change.

I have a "three strikes" theory. If you have at least three developmental things that you are concerned about with your child then you should definitely see a professional and find out what is going on. This doesn't mean that there IS something wrong, but it's worth the time checking it out. Those of you who are worried about being too paranoid remember this one thing: go with your gut. If your gut tells you that you should see a doctor then do it! Don't wait for a doctor to tell YOU something is wrong. Parents are usually the first people to notice when something is wrong. My last thought I want to share is that all of you need to remember that a child is not the finished product. They WILL grow up and even if something IS wrong, that doesn't mean that they are doomed. There are remedies and solutions to many developmental issues. Things do get better and the sooner they are found, the sooner they can be fixed.
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When do we need to worry? Never!
When do we need to take action? Always!
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Top Ten Ways to Maintain Your Sanity

2009-08-09T21:25:00.000-07:00

People are always asking me how I maintain my sanity with everything going on in my life. I compiled this "top 10" list for fun and thought I would share it with all of you.... enjoy!

#10) Must make sure to take time out for yourself. This is so important especially for moms.
You can't have a happy home unless YOU are happy.
#9) Don't live beyond your means. It is a proven fact that money matters are #1 on list of stress among couples. If you can keep debt down then that is one less thing to worry about.
#8) Treasure those true friends, and learn to know the difference. There are those people who come and go out of our lives and those who stay with us through the thick and thin.....THOSE are the ones you want to hold on to. No money in the world can buy that.
#7) Learn from your mistakes. We are ALL going to make them. If we can learn from them then we can actually turn it into a blessing in our lives.
#6) You have to maintain a good sense of humor. Learn to laugh at yourself. Learn to laugh with others. It's been said that people who laugh at least once a day will extend their life by years!
#5) Learn how and when to say, "No!" That is such a hard thing for some people. I know it is for me. However, you will quickly go insane if you overextend yourself and your time.
#4) Limit your t.v. time. All the news and violence on t.v. is enough to make ANYONE crazy!
#3) Join support group for whatever ails you.... there is even support groups for losing weight!
#2) Discover what your talents are and do what you can to cultivate those talents.
#1) My top way to maintain your sanity is to learn the message in the Serenity Prayer: God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.
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Trust in the LORD with all your heart
and lean not on your own understanding;
in all your ways acknowledge him,
and he will direct your paths.
(Proverbs 3, 5-6)
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The Wilson's Disease "Bible" (Part II)

2009-07-26T15:57:00.000-07:00

Understanding how to treat Wilson's Disease is the key. The rest of the book discusses management and treatment. The last chapter discusses the history and future of Wilson's. That was my favorite part to read. I had no idea how recent testing and treatment had been made available. It was definitely a bitter-sweet moment when I realized that if my oldest son would have had Wilson's Disease (being born in 1996), the specific genetic test that ulitimately diagnosed my daughter would not have been available!!

Chapter 5 explains management and what is important and what is not. This chapter answered a lot of questions for me. He suggests that "a low copper diet" is not necessary...especially after patient is on anticopper drugs. He also cautions that drinking water is actually more of a risk, particularly during the initial therapy. How does the doctor choose the drug? This chapter answers that question. What about monitoring? That is also answered. He covers diet and how there are only two things that he cautions patients about: liver and shellfish. He explains that "we have remeasured the copper level in most of the important foods, and find that the content of copper in foods listed in previous tables were too high..." I thought that was quite interesting. He suggests testing your drinking water and if the copper level is more than 0.1 PPM (parts per million) then getting a filter or finding alternative water sources. Unfortunately, in our area the copper level in our water is above the recommended level for my daughter so we got a Brita filter. FYI: Brita filters (the ones that mount on the faucet) DO filter copper.

Chapter 6 discusses the treatment of patients with liver disease. This is the type my daughter could have had if she were not treated, and so I was especially curious to read about the types of symptoms to look out for and laboratory results that pertain to this manifestation of WD. He goes over liver transplant and that was quite scary for me to read. He stresses that doctors should NOT do a liver transplant as long as medical therapy is doing the job. He DOES explain when liver transplant SHOULD be done and even offers a recommended anticopper therapy for those patients awaiting a liver transplant.

Chapter 7 covers treatment of patients with neurologic and/or psychiatric disease. He cautions doctors against using penicillamine therapy for these type of patients. He says that symptoms will actually get worse in about 50% of patients.... and worse yet, the risk of permanent worsening is about 25%! Dr. Brewer suggests using Tetrathiomolybdate for these patients and explains in depth why.

Chapter 8 discusses maintenance therapy. Maintenance therapy is what happens after you get rid of the copper toxicity and continues for the rest of the patient's life. He covers the objectives and methods of maintenance therapy. Dr. Brewer definitely prefers zinc therapy and explains in detail all about it. He offers graphs and lots of information that support his findings. This chapter is perfect for any patient who wants to know how zinc works and how to monitor it throughout his/her lifetime.

Chapter 9 was the chapter that I anticipated the most. It covers the therapy for presymptomatic, pediatric, and pregnant patients. Since my daughter is a pediatric patient and will one day (hopefully) want to have children, I anxiously read through this chapter hopeful that she would have the opportunity to bear children. According to Dr. Brewer there is hope for my daughter. He emphasizes the need to continue anticopper therapy throughout the pregnancy and that with the zinc acetate there is less risk of teratogenic (disruptive to the development)effect on the fetus than penicillamine (which used to be the only choice for patients). This is something that she will definitely have to prayerfully decide. According to Dr. Brewer zinc is the safest of all the drugs. The biggest danger is the mother deciding to halt her medication out of fear of harm to her unborn.... that would definitely be tragic.

In Chapter 10 Dr. Brewer discusses the risk factors during maintenance therapy and the prognosis of Wilson's patients. The biggest risk, believe it or not, is POOR COMPLIANCE! This is especially true in younger patients and/or asymptomatic ones. He says, "It is always shocking to me that compliance is not almost perfect in this disease, given the availability of an effective, oral, non-toxic medication, such as zinc, and given the severity of the alternative." That basically sums it up. However, he goes over some of the things that CAN happen to patients when certain symptoms do not improve and how accidents can be another issue. This is especially true in patients with neuroligical symptoms. For example, a patient with severe depression might commit suicide. That is something that doctors need to be aware of. His final sentence in this chapter is my favorite one: "The bottom line that should be conveyed is thta if you're going to have a genetic disease, this is a good one to have because it is so treatable."

Chapter 11 covers the disease pathogenesis and genetics. Although I HATE what this disease does, I have to admit that the genetics and the disease itself is rather fascinating. I never realized how important copper truly was until I had to read all about it. Why don't doctors test it more often? That is definitely a question to ask. There are still many things we do not know about the genetic defect of the ATP7B gene and how many mutations there are. According to this chapter, over 170 mutations have now been described!! There is an interesting table that shows the mutations in various populations. It is suggested that depending on the mutation that determines the age of onset of the disease and how it manifests itself. Perhaps one day they will be able to find a way to test for that. I am sure it is not too far in the future.

Chapter 12 discusses disease pathology. This chapter answers the question of how excess copper causes damage to cells and organs. This is the chapter that will enlighten you to how important copper is and why too much and not good. This explains why the liver is the primary organ that is affected. The next organ that usually affected is the brain since it is the next most sensitive organ. He discusses the female reproductive system, skeletal system, kidneys, eyes, and heart. It is important to note that Dr. Brewer states: "In the past, the disease was likely more advanced when diagnosed. This probably accounts for many of the pathological and clinical differences reported in the past compared to more modern experience. Today we almost never see the kinds of renal, skeletal, and cardiac abnormalities that were commonly reported two or three decades ago."

The final chapter is one that covers the history and milestones of Wilson's Disease. It is interesting to see how the discovery of the disease came about. It all started with Dr. Wilson who saw several patients with liver disease and then Kayser and Fleischer observed corneal copper deposits in the eyes of another group of patients. All of this happened in the early 1900's. Eventually the copper connection was made and the disease was discovered. It is interesting to note that in 1977 Dr. Brewer observed that zinc therapy in sickle cell anemia produced copper deficiency. This is what led to the idea of using zinc for therapy. It wasn't until 1993 that the genetic cause of Wilson's was discovered. In 1997 zinc therapy was finally approved by the FDA. One thing that was interesting to note was that just because a patient has the harmful mutation of the ATP7B gene, that doesn't mean that the person will reach the full penetrance of the clinical disorder. Therefore it is not ever 100%. Some patients might actually have a milder expression of the gene. Dr. Brewer also mentions that he had two patients who were vegetarians and adequately controlled the disease. He says that the mechanism of this is that copper is less thoroughly absorbed from vegetable foods than from meat. He cautions that he does not recommend a vegetarian diet as a therapeutic approach because it may not work in some patients. His main point is that diet can be a factor in age of onset and other manifestations.

The most important part of the book is the challenges that Dr. Brewer expresses. He basically says that if a doctor doesn't even consider Wilson's in a patient then it won't be diagnosed. If it isn't diagnosed then it won't be treated. If a patient is not treated.... the end is not good. However, the future looks bright. There are already new and better treatment options. The screening methods are improving. I know that there will be advancements in the field of genetics that will help with testing and screening. As we better understand the role of ATP7B in regulating copper then we can better understand how mutation of this gene intereferes with this function. That will ultimately lead to more patients being diagnosed and less ending up with tragic endings.
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The future definitely looks bright!
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The Wilson's Disease "Bible" (Part I)

2009-07-19T17:07:00.000-07:00

I accidentally came across a book while doing my research one night. The site I found actually had some excerpts from it and so I was able to read them and was excited about what I had found. The book is entitled: Wilson's Disease: A Clinician's Guide to Recognition, Diagnosis, and Management. The author is George J. Brewer. If you remember, I discovered him recently and found him to be a dedicated doctor who has treated hundreds of WD patients.

My husband recently found it online for a fair price and so we purchased it. Initially I was hesitant because it is a rather expensive book and it IS intended for physicians. However, considering my background in medicine AND my history with doctors and treatment for my daughter, I thought it would be an invaluable investment. This is a book I intend to keep on my bookshelf for a very long time. I just wish ALL doctors did too. It is written so plain and simple and I devoured every word the first chance I got. I read the book from cover to cover in one night. I was so excited about the information and the optimism Dr. Brewer has. He wants doctors AND patients alike to know that a Wilson's diagnosis doesn't mean the end.... it's just the beginning. It is critical that patients receive treatment right away! Asymptomatic patients can't wait for symptoms before doing something. The following information is from the book and I am so excited to share some of what I learned.

The one thing that I was impressed with about the book is the format in which it was written. It doesn't waste your time at all! The first chapter informs doctors about what chapters to read depending on the circumstances of the patient they are inquiring about. It has possible situations and the recommendations. The first chapter basically explains the cause of Wilson's and how it is acquired. It explains the clinical manifestations and ways to recognize it. The last part I was really excited about was the prognosis. Dr. Brewer explains that "it is unfortunate to have a genetic disease, but if you're going to have one, Wilson's is a good one to have, because it is so treatable." Those words have echoed in my mind ever since I read them.

The second chapter explains something that is sooooo critical. He discusses the challenge of recognizing Wilson's. Early recognition is what saves lives. It is the difference between leading a normal life or ending up with serious neurological symptoms or liver failure. Since WD only occurs in approximately 1 in 40,000 births that means that most doctors will not see a diagnosed case in their entire career. The main thing I learned from this chapter is that there are many ways WD can manifest itself. It can be neurological symptoms, hepatic, or behavioral changes. I had heard of the neurological symptoms and liver symptoms, but the behavioral changes was something I had not read much about. Among these symptoms are: difficulties in school or work, temper tantrums, anger, bouts of crying, depression, loss of inhibitions, insomnia, and hallucinations. Dr. Brewer also discusses unusual situations that may present or precede the usual clinical manifestations of WD. I can only imagine all the people who are put on medicines or even institutionalized wrongly! One thing that REALLY impressed in my mind were the various examples he gives of disasters or near disasters caused by patients being misdiagnosed. That part brought me to tears.

Chapter 3 is filled with invaluable information regarding the screening and diagnosis of Wilson's. There are many tests that are underutilized and yet others that give false positives or false negatives. It's so important for doctors to know how to interpret laboratory results they order. They need to understand that some tests are just "screening tools" while others may give more definitive answers. Since WD can present itself in so many ways that means that laboratory tests will also present itself in many different ways for various patients. He discusses the presymptomatic patient as well in this chapter. These are the most difficult to diagnose. It is important for doctors to screen ALL family members who are at high risk once a diagnosis is made.

Chapter 4 was a VERY interesting one for me to read. It talks about the anticopper drugs available to treat Wilson's. He goes over each and every one of them and discusses the pros and cons for each one. He goes over the mechanism of how each works and explains how long it takes for each to work and how they can be monitored. That is something that is critical during the "maintenance" phase of treatment. He carefully discusses how to test the patient to ensure that they are taking their medication. Noncompliance is definitely an issue, especially with asymptomatic patients since they don't realize how sick they can become. If you are not on ANY treatment and you have been diagnosed with Wilson's Disease then PLEASE take my advice and discuss treatment options with your doctor. There are various medicines and treatment options for you!
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(To be continued.....)
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Beyond Chance (Part II)

2009-07-14T22:13:00.001-07:00

We saw a team of doctors who expressed an interest in my daughter's case. I felt good about the whole experience and felt that she was in the best possible hands. How could I not? Well.... to make a long story shorter....she went over a year without any treatment. They repeated her liver enzymes and asked me to collect a 24-hour urine copper. They explained this would be our way of monitoring her progress. Her urine result turned out normal. They warned me that a liver biopsy was inevitable but that they were going to postpone it for now. They told me that they would see her again in six months.

Six months later I took her to her appointment and this time the doctor mentioned that they wanted to start chelation therapy instead of the dreaded liver biopsy. Of course, I was relieved to hear the news and so the information did not "register" until I was on my way home. I started to panic about chelation because I vaguely remembered reading about the horrible side effects. My daughter was asymptomatic and doing so well. Did I REALLY want to make her sick? Did it make sense to start with chelation when there were other options? I decided to do some research.

I went online as soon as I got home and Googled "chelation therapy". I then decided to check out the Mayo Clinic website and read what they had as far as initial therapy was concerned. Everything I read led me to believe that zinc acetate was actually the treatment of choice for my daughter. I also remembered that I had access to the president of Wilson's Disease Association and I decided to email her about my feelings and concerns. This angel of mine immediately emailed me and validated my concerns. She told me that chelation was definitely not the first treatment of choice for asymptomatic pediatric patients. She sent me some information and booklets. I was convinced that I needed to contact the doctor at Children's Hospital and ask him if he had even considered this safer option.

I called the nurse and asked her to make sure that the doctor had considered zinc acetate as a possible treatment. I tried to remain optimistic. I did not want to believe that the doctors would blindly put my child on a very dangerous treatment without looking at the most obvious choice. The next day I received the phone call from the nurse telling me that the doctor had NOT heard of zinc acetate and that he did some research and felt that it WOULD probably be the best route to take. Surprise....surprise....surprise.

What IF I would not have done my research? What IF I wouldn't have questioned the treatment? What IF I wouldn't have contacted the right people? What if? What if? What if? I am totally convinced that things don't happen by chance. There is definitely a much higher power that is responsible for all the blessings in my life. My sweet husband, family, and friends constantly remind me that my kids are so lucky to have me as their mom. I believe that I am the lucky one. I have learned so much from them and my faith in all that's good comes from my motherhood experiences. I don't ever pretend to have all the answers. However, I do have to give myself a big pat on my back for providing these opportunities that have opened so many doors for treatment and ultimately maintenance of my daughter's Wilson's Disease. Who knows what her future COULD have been? That is why I am determined to remain an advocate and to educate everyone I can. PLEASE learn from my mistakes and take whatever tidbits you can from what I have learned and shared. It's beyond chance that you are sitting there reading this right now.... I honestly believe that.
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We are more than mere pawns in
the game of life. We have the
power to be kings and queens.
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Beyond Chance (Part I)

2009-07-13T21:18:00.001-07:00

I've had some faith-promoting things happen in my lifetime. However, the events that have occurred in the past two years involving my daughter with Wilson's Disease have truly been nothing short of a miracle. I wanted to briefly summarize my journey through symptoms, diagnosis, and treatment so far. I will then discuss a book that should be in EVERY doctor's library. I think this is one of the most important entries I will ever write because Wilson's Disease is rare and my daughter's case is even more rare.

My daughter was a healthy normal child until about the age of two when I noticed symptoms such as her lips, hands, and feet turning purple when she sat in her high chair for long periods of time. She slept more than normal. It was not rare for her to have two naps a day, each consisting of at least 3-4 hours. I tried getting the doctors to pay attention but they ignored these symptoms.

When my daughter was 2 1/2 we decided to evaluate her for speech therapy. She showed a regression in speech. I had some experience with this since my older two sons also had to have speech therapy. During her evaluation the therapist suggested I see a neurologist. She noticed that my daughter was having staring spells. I had never heard of that before and it was shocking to hear those words. However, I listened to this "angel" of mine and before long I had an appointment to see a pediatric neurologist.

The pediatric neurologist we ended up seeing is the one doctor who finally made sense to me. I give him credit for saving my daughter's life. He was not a conventional doctor by any means. He believed in more untraditional medicine and some of his ideas were not respected by other doctors in our area. One of the things he did was do a thorough evaluation of my daughter's blood. He checked many things that are not traditionally tested such as copper, ceruloplasmin, and various other enzymes. He ordered an EEG and CAT scan. He also told me to put her on a special diet of milk-free food for a while and see what happens. He also suggested a liquid multi-vitamin that I purchased at a health food store. There is one other thing he told me that goes against everything I was taught in school. He told me that there was evidence to show that vaccines caused neurological damage in some kids. Could this be causing my child's neurological symptoms? We just will never know.... even to this day.

The labwork was shocking to my doctors. My daughter barely had any copper in her blood. Normal values are 90-180 and she had values that ranged from 7 to 9 after repeat testing. Her ceruloplasmin was also low and almost nonexistent. Her liver enzymes were slightly elevated. When we went for her follow-up the doctor told me that there was a chance she could have Wilson's Disease and we needed to rule it out. That was the first time I had ever heard of that. Of course, that night I googled it and found out everything I wanted to know and a lot I did not want to know.

Her first test was the EEG. The results were inconclusive. The neurologist saw "some abnormal discharges" during the test, but nothing shocking. The CAT scan also came back normal. We took my daughter to an optomologist to check her eyes for the Kayser-Fleischer rings (which are basically distinctive rings of copper that accumulate in the eyes of many Wilson's patients but cannot be seen except by an expert). The optomologist did not see anything wrong with my daughter's eyes. She basically failed all of the "screening tests" for Wilson's Disease at this point. However, the neurologist was not convinced that she was okay. He knew something was wrong and he was determined to find out what. That is what I liked about him. He did not give up. The next thing he did was order the ATP7B gene testing to rule out Wilson's for sure. However, there was a laboratory error and it was never done. He tried a second time with another lab and for some reason it just never got done.

Unfortunately, this doctor moved shortly after this vital step in the process. The next thing that happened is very hard for me to even recall. I felt so hopeless during this time. I felt like the only person who could help my daughter had left me abandoned and all alone. However, I was not going to give up that easily. I searched and searched for another pediatric neurologist. I found out that there was only one left in my city and so I tried her next. She seemed very capable the first time I saw her. I liked the fact she was also a mom and that for some reason reassured me. Little did I know that it would not matter in the long-run. I told her about the previous doctor and what he was trying to do. She told me that he was a "quack" and did not understand why he did all those "crazy" tests on all of his patients. I was shocked to hear her say that. I expressed my concerns about ruling out Wilson's. She was not convinced. She said that my daughter was fine and healthy and that I did not need to do any more testing. However, she hesitantly ordered a 24-hour urine copper. Unfortunately, it came back normal and so she was convinced that my daughter did not have Wilson's.

(This is the main reason I wanted to write this post. I want to urge all of you out there who have a child with ANY copper and/or liver issues to rule out Wilson's Disease. Although it is considered a very rare condition, I am here to tell you that MY daughter has it and it's not rare to me! Listen to your gut and don't give up.)

A year later I decided to take my daughter to the Children's Hospital in Birmingham, Alabama. That is where I was blessed with a Pediatric Neurologist who had previously worked as a Genetic Doctor. I hit the jackpot!! When I told her about my daughter and how I wanted to rule out Wilson's Disease, she only hesitated for a moment and then ordered the very critical test that eventually diagnosed my daughter........ the Wilson's Disease work-up at Mayo Clinic! It consists of the ATP7B genetic test and other specific markers. Her results came back conclusive as diagnostic for WD. Finally, we had a diagnosis!! It took us almost 2 years, but we finally found an answer to why her liver enzymes were elevated and her copper was so low. I was referred to a liver specialist and a GI doctor. The rest of the story will probably not surprise you.
*********************
To be continued......
*********************

My Son's "Rudy" Moment

2009-07-02T15:30:00.000-07:00

I strongly suggest you see the movie "Rudy" if you haven't already. It's a very inspirational movie and is based on a true story. It's about a young boy whose life-long dream is to play football for the Irish or Notre Dame. He's short and not the best player, but his strong will to overcome his weaknesses help him to make his dream come true. Anyways, the reason I call this entry "My Son's Rudy Moment" is because I witnessed something in him that I saw in Rudy and I couldn't be more proud of him.

My oldest has never been great at sports. He's very smart and has always been good at computer games and such, but sports has never been his "thing". We tried baseball a couple years and he sat on the bench and hated every moment of it. When he was out on the field he would just observe the insects on the grass or look at the clouds in the sky. He had trouble paying attention to the game and since the ball rarely got hit his direction, it was boring for him. We gave up after about three years of baseball. It wasn't worth the time and effort on OUR part getting him to practices and even coaching one year.

A few years ago we tried soccer through the local YMCA. Again, we saw the same thing happen. He sat on the bench and rarely got to play. The coach did not even give him a chance. It was sad going to the games and seeing him waiting in anticipation to play. As a matter of fact, I vividly remember telling him to be more outspoken and ask the coach to let him play. It was ridiculous!! However, the coach just ignored him and put him the minimum amount of time required. After that year I decided that perhaps I needed to stop pushing sports on him. However, deep in my heart I knew that boys NEED sports. They need it for many reasons. First, they need it to learn how to work as a team. Secondly, they need it to use up some of that energy. The last reason I feel boys need sports is because it builds character and self-esteem. It's important for a child to learn what it feels like to bust your butt and lose a game as well as winning. That is something that you can not learn any other way.

Well... this year, we decided to try out soccer once more. I love the idea of indoor soccer since I hate the heat and summers in Alabama are unbearable! I took him to his first practice and I noticed that the coach was impressed with his size. He's about a head taller than his teammates. I watched them practice and I could tell that some of the boys had been playing for a long time. In the back of my mind I was dreading it because I just knew that he would probably be sitting on the bench for most of that first game for sure! Their first game was the following day and so that meant they only had one practice under their belt. I watched the kids go out into the field and did not see my son. My first thought was, "I guess they will put him in next quarter." However, I was shocked when my son came out and stood by the goal. The assistant coach began to kick balls at him and did a little "warm-up" with him right before the game started. I have to admit that I was a bit anxious about this. He had NEVER played goalie before and I thought it was a bit cruel to put him in first quarter. He also had a rather large wound on his knee that had not scabbed over yet and so was a bit tender. I bought some really expensive bandages to ensure that he was protected. All I could do was pray that the ball would not make it his way.

The whistle blew and the game started. The other team had some very seasoned players and the ball was near the goal for the majority of that first quarter. Every time they kicked the ball towards the goal my heart would skip a beat. I would hold my breath and sometimes close my eyes. My son blocked each and every one of them! He got aggressive and would reach out and grab the ball and throw it past the halfway mark on the field. I was so impressed and so were the other parents. They cheered and clapped for him. Unfortunately, his bandages on his knee kept falling off and so the other team got a couple points... once while the assistant coach attempted to help him put another band-aid on and then another time while my son was attempting to put it back on his knee after it had fallen off onto the ground. After the second quarter the coach replaced him with his second pick. Unfortunately, the final score ended up being 14-0 and we lost. I told my son that he should be extremely proud to know that he did such a good job and they were only able to get a couple points while he was the goalie.

The next game was just a few days later. The coach had called me and told me that he saw great potential in my son and that he was going to put him as goalie again. He was surprised when I told him that he had not played goalie before and that to be honest he had not much playing time since the previous coach kept him on the bench most of the season. He told me that he had seen great improvement already from the first practice until the first game. I had seen a change in his self-confidence for sure. It was a neat thing to see. We played the same team we had played in the first game and so my expectations were kind of low. I figured if we scored anything that was good for our team. My son did a great job once again for two quarters, and this time we figured out how to bandage his knee properly so that wasn't an issue. When it came time for him to play out in the field I saw him make some moves that totally blew me away. He was actually aggressive and I had NEVER seen that side of him before in ANY sport. He ran the ball, passed it to one of his teammates, and then got right by the goal and when the ball came his way he kicked the ball into the goal! Everyone cheered and one of the parents turned to me and said, "That's what I call goalie's revenge!" He looked over at me and gave me a smile and I smiled back. That moment was totally priceless! When the quarter ended he got "high-fives" and praise from all the team and coaches.

The final score was 2-6 and our team lost. However, it was definitely an improvement from the first game and we showed the other team that we are not going to give in that easily. After the game, the coach explained to us that there was some "unsportsmanlike" conduct displayed by the other team after the game and that just showed that we got to them. I really like this coach and I love the fact that he gives ALL the players a chance to shine. He has an optimistic attitude and it rubs off onto the kids. We need more of that in the world today.
********************************
When you feel like giving up....
DON'T!!!
********************************

A Great Idea to Solve the Public School Crisis

2009-06-24T15:15:00.001-07:00

http://www.usatoday.com/news/washington/judicial/2009-06-22-courtschools_N.htm

I just read the above article posted by the USA Today site. They basically ruled that schools that don't meet the needs of children with special needs will have to pay for the private school that these kids will end up attending. What an idea!!! I happen to live in a state/area where special education is inadequate at most. There are so many people pulling their children out of school and putting them into private. That is the reason the schools don't change. They figure that the parents will just take care of the problem themselves. Those families who are not as fortunate or who don't have the means to go to private school end up staying and their children often don't get the help that they need. They are often put in self-contained classrooms that don't really address the problems but just provide a place for these kids to go. Their goal is to eventually put them into the mainstream classroom, but at what cost?

Do teachers REALLY want children with special needs in their classroom? The answer is NO! They don't have the time, means, or resources to deal with this issue. They have to meet certain deadlines, curriculum, and testing standards. If they have to spend extra time dealing with behavior or other issues that often arise then they don't have the time to properly teach the rest of the kids. I am not a teacher, but I can understand that perfectly. The system is broken!

The answer to this problem would be to make the schools accountable. If a school knew that they would have to pay for private school for these special kids, they would try a little harder and perhaps come up with some different programs for these kids. I think that children with autism are the ones who are hurt the most. The reason is that they are often very smart, but the schools can't see past their behavior or other social issues. There is also such a broad spectrum and the schools want to lump them all into one group or category. I will never forget when they requested my #2 be put into a self-contained classroom in kindergarten. I am SO glad that I didn't listen to them. I stood my ground and fought for my child. Of course, in the end I did what they wanted me to do... I pulled him out and home schooled him and then eventually put him into a private school. It would sure be nice if I received compensation. As a matter of fact, they should pay me what they spend per child per year in public school. That would be fair. I especially think that should have been the case when I home schooled.

All parents regardless of race, income, religion, and social standing want the same thing for their children. They want their children to have a good education and be able to have a better life than they had. This does not stop with children with special needs. These children are going to grow up into adults. They need to be able to be self-sufficient and to be able to make a living. Children with Autism, ADD/ADHD, or PDD have challenges but history shows that early intervention makes all the difference. If we arm teachers, parents, and eventually these children with the proper tools then there is no limits to what can be achieved. I have seen children who could barely talk or even eat, get the proper help and now are in traditional schools and will lead a basically normal life. I wish you all could see the changes in my own son. He now LOVES school. He looks forward to going and learning. He has been given a chance and has proven to the teachers at this new school his TRUE potential.
******************************
We need to pay more attention
to the Attention Deficit that
is truly plaguing the nation's
schools.
******************************

Zinc Acetate... is it a better alternative?

2009-06-24T13:51:00.000-07:00

Recently my daughter's doctor wanted to start chelation therapy for Wilson's Disease. He told me that it was a better alternative to doing a liver biopsy. Of course, when I heard those words I agreed. I left the office still feeling uneasy since my daughter is asymptomatic and they just don't seem to know what to do with her.

I went home and did what I do best.... I googled and researched my heart out. I came across a name of Dr. George J. Brewer. He knows so much about Wilson's Disease that he actually wrote a book! I was able to read some excerpts I found online and it made so much sense! This book is intended for doctors who are GI specialists or liver specialist. He talks about symptoms and things to look out for. He also cautions that Wilson's Disease is often misdiagnosed or not treated properly. He goes over a few different scenarios and how important it is to also test family members of patients with Wilson's.

I went to one of my favorite websites: www.mayoclinic.com (since they are the ones who do the testing for Wilson's Disease) and found some information concerning chelation and different drugs. I also found some information on zinc acetate. According to the information I read, it said that chelation drugs are very dangerous and that if the patient is asymptomatic the doctor will usually begin with zinc. I thought about this and continued my research. I contacted someone from the Wilson's Disease Organization and they confirmed that the chelation drugs are very nasty and have some serious side effects. I knew that since the doctors had told me that to begin with. I still didn't want to make any haste decisions... so I decided to call the nurse and tell her my concerns and ask her if the doctor had considered zinc acetate as a possible treatment? I told her that I was confident that he had, but I would feel better hearing it from her.

I just got a phone call from the nurse and she said that the doctor did some research on the zinc acetate since he didn't know much about it and found that it would probably be the best route to take right now. He felt better about going that route versus chelation. I am once again disillusioned with the whole situation. I thought he would be on top of things, but it seems like I am the one doing the legwork. They are the ones getting paid the big bucks. I thought they would take a special interest in her since she's such an "enigma" .... to put it in their own words.

My husband purchased a book entitled: "Wilson's Disease: A Clinician's Guide to Recognition, Diagnosis, and Management" written by George J. Brewer. Dr. Brewer has seen over 300 patients with Wilson's Disease, including many younger patients with no symptoms. I would love to talk to him, but this is going to be the next best thing. The book should be arriving soon and I am going to read it from cover to cover! The more informed I am, the better I will feel. It is obvious to me that I have been an integral part in my daughter's success so far and I intend to do all I can to ensure that she stays healthy. I am not going to wait until she has liver failure or hepatitis to be proactive. I am not going to let this "disease" get the best of my daughter.... not by a long shot!
**********************************
I am not going to sit back and let
this disease take charge.
**********************************

Let's Eat!!

2009-06-12T12:09:00.000-07:00

Summer is a time to play, swim, and play, and swim at our house. It is also a time to eat! The kids are "endless pits" and I find myself trying to find ingenious ways of stretching our food so I don't have to go to the store every other day. I also think it's important to keep things at least halfway nutritious. I have already seen my oldest grow into the next pant size in less than a month's time and I know they need all the nutrition they can get!

Some things I try to keep in stock at all times are: milk, bread, eggs, Malt-flavored Ovaltine, frozen strawberries, bananas, peanut butter, fruit spread or jams, ramen noodles, rice, and oatmeal. I thought it would be fun to post some nutritious but delicious snacks that are favorites at our house.... enjoy!!
..............................
Smoothies:
2 cups milk
1 banana
scoop of ice cream, any flavor (optional)
a handful of frozen strawberries
a handful of ice cubes
a teaspoon of vanilla
3-4 Tbps. Malt-flavored Ovaltine
(put all ingredients in a blender until smooth)
*Add more ice if you like it thicker*
*If you don't have bananas, the smoothie will still taste good... just add more chocolate Ovaltine.
*This also tastes good without the Ovaltine.
(Just experiment with the ingredients and see what you like.)
...............................
Ramen Noodles with egg:
I just make the noodles according the package instructions and then add 1-2 eggs scrambled once the water is boiling. It's easier if you scramble the eggs in a bowl and then add slowly to the boiling water stirring in clockwise direction as you drop it in.
*If you want to decrease the sodium, then just add half the packet of seasoning.
...............................
Special K cereals:
They have some really neat flavors now. My kids love the Vanilla Almond flavor. They also enjoy the one with strawberries. It's a quick and nutritious snack that most kids would enjoy.
*This is especially helpful to the moms who are trying to lose weight.
...............................
PB&J Sandwiches:
If you use whole-wheat or White Wheat and use fruit spread and not the "jelly" then you actually have a decent snack for your kids. My kids love for me to cut their sandwiches into shapes. Sometimes I do circles, other times I do hearts.
*If you pack them in aluminum foil instead of sandwich bags, they won't get crushed when packing for picnics.
...............................
Oatmeal:
I make my oatmeal with milk and cinnamon sugar. They love it and will eat it for breakfast AND snacks.
...............................
Fresh fruits and veggies:
You would be surprised what your children will eat when they have it cut up and with a dip. Try it and see. My youngest who is picky will actually eat artichoke dip... imagine that!!
...............................
"On-the-go" Ideas:
I try to have those Fiber One bars or "Breakfast" bars available. They are great for when you are in a hurry and don't have time to cook anything. They also make a great snack and you can carry them in your purse or bag.
...............................
Another great time-saver and money saver is the crock pot. Learn how to use yours. You will be amazed at all the things you can make in one... including dessert!
..............................
I hope everyone is having a great summer and that you are able to feed YOUR "endless pits". Don't forget the sunscreen and more importantly, drink plenty of fluids!

***************
Happy Summer!!!
***************

Things That Make You Go "Hmmm??"

2009-06-09T13:13:00.000-07:00

Since summer started I have had more time to observe kids and parents in unstructured environments. I think it's funny how as time goes on I am becoming more and more like my mom when it comes to safety and such. I still consider myself laid-back when it comes to most things, but experience has taught me that it is unwise to put your children in a potentially harmful situation or to ignore when other kids do.

My friend and I were at Burger King (one of our favorite places to go since they have a nice indoor playground) and we noticed that they were getting ready to start a birthday party. They had cleared a section off and the kids were arriving. There were about 11 kids and their ages ranged from 2-9 years of age. I had my back turned towards the kids when all of a sudden my friend gasped. She said, "Look over there. There is a girl pushing another child on the high chair. I wonder if the parents know?" I glanced over my shoulder and saw what she was talking about... they were giving "rides" on this high chair with wheels and letting go. The parents were looking over at them and smiling. They didn't see anything wrong with it. I suddenly had flashbacks of when my middle two did the exact same thing except using computer chairs and one ended up at the doctor's office needing stitches. I told my friend about my experiences and then contemplated whether we should say anything. However, in that instant we suddenly heard a child crying... it was too late. One of the kids got hurt. Luckily, it was just that a little girl had her toes run over by the high chair. THEN the mom goes over and reprimands the poor little girl who did not know any better.

Earlier this week I went to our neighborhood pool and met up with some friends. We were having a very good time and kids were playing so well. All of a sudden the lifeguards whistled for "adult swim" which means all the kids had to get out of the pool for the next ten minutes. Luckily, we have a splash park and so the kids hang out there until the pool reopens. There is also a Kiddie pool and that remains open as well. I went over to the splash park to keep an eye on my three year-old. Things were going fine until he started to fuss a little about sharing a squirt gun they had. While I was dealing with THAT, I wasn't watching my #2 as carefully while he played with the squirt toy they had at the park. All of a sudden a mom comes up to me very upset and says, "Your son squirted water all over my baby's face and I am furious!" I noticed the approximately 12 month-old little girl on her hip and she seemed okay. Although we WERE at a "Splash Park" (A.K.A. "Let's squirt each other and get wet" Park) and the baby probably should not have been there, I took it seriously and reprimanded my son for doing that since it WAS a baby. I asked him why he did that and he said, "The baby was having fun." I explained that if the baby was crying (which I had no idea if she had because I didn't see it happen) then she probably wasn't having fun. THEN I made him go to the mom and apologize. She THEN proceeded to apologize to ME and said that she had issues with some of the other boys already and other things happened before we got there and so she didn't mean to get so upset with me. Well.... why didn't she just LEAVE then? I mean, why put your baby in harm's way? This is a splash park that is NOT designed for babies. That is why they had a "Kiddie Pool" and it was practically empty at the time. As a matter of fact, there were some harsh sprayers in the park and a place where buckets fill and then they dump water down REALLY hard on the kids. Some people just don't have common sense!

Moral to these stories is ... kids will be kids and we can't expect them to think like we do. If we allow them to be involved in a potentially dangerous situation then you can't blame THEM when something happens. More importantly, we need to make sure WE don't put our kids in a potentially dangerous situation. Unfortunately, some things have to learned the hard way. I have four children and so I've had my fair share of "incidents".... consequently, I have learned from them. There is nothing worse than seeing your child strapped down screaming while the doctor attempts to stitch a wound that happened from a preventable accident. I've rather hear my children cry and pout because I said, "no!" any day!
*******************************
I try to live by Murphy's Law
when it comes to accidents.
*******************************

Swimming is Truly the Best Medicine!

2009-06-06T14:54:00.000-07:00

Our family loves going swimming. We even go during the winter at the indoor pool at the YMCA and it is so much fun. What makes it ideal is that it is great exercise, it helps with appetite, it is very cheap, and it is definitely entertaining. My kids can stay in the pool for hours and that's what we usually do. They often find other kids their age to play with and if there is not anyone around then they play with each other.... imagine that!!

Today I was feeling a little bit lazy and lacking in energy. My plan was to catch up on a little housework and then lounge around. However, the first thing my daughter said when she woke up was, "Can we go swimming today?? Pleeeeeease???" How could I say no? I told the kids we would go under one condition. They would have to clean their rooms while I finished cleaning the downstairs. They ALL ran upstairs and I did not see them again until they finished. My oldest woke up with a bathing suit on and so he didn't even have to change. He was eager to go since we haven't been a few days. He recently had surgery and so he wasn't allowed to get his knee wet. (I will post about that later once we get the pathology report back.)

We went at around noon and didn't leave until 2 o'clock. The sun was blazing hot, but the kids did not mind. I took advantage of "adult swim" this time and did some laps at the indoor pool. It felt good to be able to get some exercise today. I was definitely sore after ten minutes of swimming. I forget how draining swimming can be.... especially when you are not used to it. Swimming laps nonstop is definitely different than swimming around the pool with the kids. I will have to incorporate that into my exercise regime from now on.

Needless to say, when we got home the children were all drained and decided to watch a movie. I just love to see them sit together on the sofa all on top of each other when there is a perfectly comfortable empty love seat available. They truly love each other and it's in the little things like that when it's evident. Of course, summer has just begun, but so far things are going well. They aren't killing each other yet and I am not ready to lock them up either.
****************************
Summer tidbit: Swim lessons
aren't always necessary.
Just get them in the water
and let that positive peer-
pressure be your friend.
***************************

Friends Make the World Go Round

2009-05-31T18:57:00.000-07:00

I was thinking about my childhood today and how much fun I had growing up. Part of the reason was that my dad was military and so we moved a lot. That meant that I made a lot of friends along the way. Some friends I only knew for a few months, others I knew for years. They all had an impact on my life in some way and the kind of person I grew up to be.

For reasons I have already discussed in previous posts, my older two children don't make friends as easily. My oldest has self-esteem issues and doesn't seem to relate to kids his age. He loves playing with other kids, but his interests often bore others or else isolates him. My #2 is still not mature enough for me to let him go to other friend's houses without me present, and so he doesn't get the same opportunities that others his age might get. I worry that he can get taken advantage of since he's so innocent. I know he loves playing with other kids and we try and provide those opportunities for him.

This summer I am hoping that my children will be able to reconnect with some old friends and make some new friends as well. I need to provide the opportunity for them to do that. One thing I have promised myself to do is call parents of children who I know they enjoy playing with and setting up "play dates" or other opportunities for them to get together. We plan on meeting up with some friends at the pool throughout the summer and that is something my children are looking forward to. Unfortunately, we live in a neighborhood where most children will be at camps or daycare settings during the summer since their parents work. However, I am sure that we can find some who will be in the same "boat" as us and who are looking for people to play with. I've already received numerous offers for my daughter, including an old friend from preschool. She's definitely my social butterfly. There are also a number of kids in her kindergarten class who wanted her to come over during the summer. I have all their contact information and so we will definitely keep in touch.

Whatever happened to neighborhoods where the children can just roam the streets and come home before dark? Those days are gone. However, we can still find opportunities for children to make those bonds and friendships that they need. I remember when we used to live in an apartment complex and I hated not having a backyard for my then toddler to roam and play. At least now we DO have a backyard and my kids have met and befriended their "backyard neighbors". They have become pros at jumping the privacy fence and making their way into neighbor's yards. I don't encourage it, but it's a fun thing to see. The neighbor kids come over too sometimes and that makes me feel a little better about it.

Another way that children make friendships is through sports. Three of my children will be in soccer this summer and that will hopefully enable them to meet yet other children who they might not have otherwise known. There is nothing like working together towards a common "goal"... pardon the pun... that brings people together. I also enjoy getting to know the parents. When you have children the same age and a common interest, it makes conversation much easier. I have met some really neat people through sports and we have stayed in contact after all these years.

I hope this post will provide some of you with ideas of ways to provide some social interactions for your children. I know how hard it is when you have to work a little harder for this. I know how unfair it seems. I know the pain of seeing other kids your child's age and how they have friends who flock around them while your child is alone for no apparent reason. I know how it feels when the finger is pointed at you as if it's YOUR fault. Don't EVER blame yourself for your child's handicaps. As long as you are aware of them and you're doing everything you can...it's truly not your fault.
**************************
You've got a friend in me.
**************************

Age of Autism Webinar

2009-05-30T10:50:00.000-07:00

I received this information recently and found it interesting. They do webinars frequenly and I think they are a good resource for parents. They are basically like a seminar online. Some are set up so you can ask questions live and afterwards they have links to discussion boards. It's definitely worth the time to check it out.

Age of Autism Webinar

Age of Autism Join us for a Webinar on June 7

*Space is limited.*
Reserve your Webinar seat now at:
https://www2. gotomeeting. com/register/ 314919714
Dan Olmsted is an investigative reporter and former senior editor for United
Press International (UPI). Olmsted wrote The Age of Autism report series
about the controversy surrounding the possibility of a link between autism
and vaccine injuries.

Dan Olmsted did the research the vaccine industry and media refused to do
and found no autism in the children of the unvaccinated Amish and the
unvaccinated patients of Homefirst.

In a series of articles on autism he wrote, "It's a far piece from the
horse-and-buggies of Lancaster County, Pa., to the cars and freeways of Cook
County, Ill. But thousands of children cared for by Homefirst Health
Services in metropolitan Chicago have at least two things in common with
thousands of Amish children in rural Lancaster: They have never been
vaccinated. And they don't have autism."

He currently edits the Age of Autism website, (AgeofAutism. com) the "Daily
Web Newspaper of the Autism Epidemic". *Title:* Age of Autism
*Date:* Sunday, June 7, 2009 *Time:* 8:00 PM - 9:00 PM CDT After registering
you will receive a confirmation email containing information about joining
the Webinar. *System Requirements*
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it or the link doesn't work
for you just let me know.
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Summer Vacation Ideas

2009-05-22T13:27:00.001-07:00

One of the challenges for ANY parent is WHAT TO DO DURING SUMMER BREAK???? This is especially true when you have children who need structure and a "routine". Things can go from bad to worse rather quickly if you don't have a game plan. I thought it would be fun to post some ideas of things you can do over the summer. I am going to start with the cheaper ideas and move on to the more expensive ideas. I got a lot of ideas from magazines I have read at the waiting rooms at doctor's offices, friends, and on television. I am hoping we can do a lot more this year since my kids are older and everyone is doing so well. I can't believe we only have a few days left of school. I know this summer is going to fly by.

The ultimate "cheap" vacation is to take the family to a nearby Recreational Park or State Park and go on a hike. We did that about a month ago and it was so much fun. Afterwards, we ate lunch that we packed ahead of time and the kids thought that was so much fun. The place we visited was an old fort that has people who stay there and dress up like colonial folk. They answer questions and show everyone what it was like to live during those times. They had a garden and the kids loved the rosemary so much that we have planted some at our home and we use it all the time. The best part of it all was that it was FREE!! We did this in lieu of camping since we don't own a tent that is big enough for all six of us. However, we plan on purchasing a tent soon and so we can extend our stay at the park overnight. THAT would be a blast!!

Another "cheaper" idea is to join your local YMCA. You can live at the pool during the summer. Also, they have lots of programs that the kids can enjoy. Our neighborhood has a pool and so we like to go there during the summer months as well. We have close friends who live here too and so we join them and have lunch together by the pool. That is a wonderful way to keep in touch with friends after the school year is over.

Again... we're staying on the cheap side for now.... Many churches have Vacation Bible School. They are not only free, but they are a wonderful program for the kids to be involved in. Our church does a three-day "B.O.O.T (Building Our Own Testimony) Camp" and they can invite friends. Other churches do week-long VBS and usually involve crafts, food, and singing. Do your research and find out which one is best for your child. Also, always check and make sure they take kids with special needs. You would be surprised how many do not.

Everyone knows about summer camps. However, did you know that there are actually camps designed for kids with Autism! My son doesn't have severe autism and so I have never had the need for it. It is a great idea though for parents who want something for their child. Our city also offers sports with children with Autism and other handicaps. They call it the "Miracle League" and I have heard wonderful things about it. That is definitely something to look into. I know there are fees involved, but they are minimal and often are run by volunteers.

I am about to step it up a notch.... How would you like to keep in touch with distant nieces and nephews without having to buy a bunch of plane tickets? My husband came up with a neat idea he coined a "cousin swap". We have four children, but we have about thirty nieces and nephews who live in the State of Washington (we live in Alabama). We thought it was sad that the cousins were not able to see one another often since it costs so much to fly these days. So... we came up with a way to do it. What we are going to do is send some kids over to Washington to stay with the family for a week and then they will send some kids over here after our kids get back. That way the cousins can spend a couple weeks visiting with one another in each other's homes. We discussed things and determined that they need to be at least eight and we figured that a week was enough time. This will make it affordable and the kids will have a blast!

If you live in an area where there are farms, you need to check them out during the summer. There are a few "You Pick" farms where you can pick your own berries and fruit. There are also dairy farms where they offer tours and even have complimentary ice cream for you before you leave. I googled and found dozens of places near our home. I love things like this because they are also good learning experiences for children.

One of our favorite places to go is Chuck E Cheese! It doesn't cost anything to enter. You can eat beforehand and then all you would need is money for games (if your children are older)... however, my kids would enjoy just jumping on the rides, playing in the indoor tubes, watching others play, and watching the shows when they were toddlers. We get coupons in the mail all the time. Just the other day we got a coupon in the mail for pizza, 4 drinks, and 30 tokens for only $19.98! It helps to call ahead and make sure there aren't any birthday parties that day. That is a trick we learned over the years. (FYI: at OUR Chuck E Cheese we have celebrated birthdays without reserving a table and paying a bunch of money. You can bring an outside cake and if you tell them that you are celebrating a birthday they will give the birthday child a complementary balloon and crown to wear)

On a less cheaper note... we have gone to places like the McWayne Center (a children's museum) and the Space and Rocket Center in Huntsville, Alabama. They were really nice and a lot of fun. We stayed at nearby hotels and enjoyed getting away for the weekend. By the way, going to hotels.com or expedia.com is a good idea. You can get very good rates and find some good options. We have four children and so we usually have to stay in a suite or similar set-up. We have been able to find rooms for around $100/night that have been REALLY nice and had ample space for our large family. Sometimes the resort or hotel can be an experience in itself.

Our best FAMILY vacation so far has been our five-day stay in Orlando, Florida last year. We went to three theme parks and stayed in a beautiful resort. Our room was like a HOUSE!! It had three separate rooms, separate dining room, separate living room, kitchen, washer and dryer, two bathrooms, master bedroom with jacuzzi tub, and walk-in closet, AND it was only 2 miles from the entrance to Disney!! The best part was that it only cost us about $100/night!!

The best thing to do is figure out what your kids like. If they are into nature and things like that then you know that nature walks, going fishing, or camping are things they would enjoy. Whatever you do.... don't let your kids vegetate on the couch all summer watching t.v. or sit around all day in front of a computer. Summer is a time you can take advantage of and do all the things you couldn't do during the school year. If you have smaller kids then just take advantage of the warmer weather. Teach your child how to swim, for example. If you have to work then take advantage of the weekends. Make every moment count. It's not about quantity of time, but the quality that counts!
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Feel free to share any ideas
YOUR family has enjoyed doing
during the summer.
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End of the School Year "Blues"

2009-05-19T16:53:00.000-07:00

I can't believe I am about to say this, but I am REALLY going to miss this past year. It was such an awesome year for us and all the kids. I am especially going to miss my daughter's kindergarten teacher. She was such a great teacher and a wonderful role model for the kids. She is going to move out of state and so I probably will never see her again. She will be teaching at a school in Mississippi, and I just hope that they realize what a gem they are getting.

My oldest definitely had a great year. His teachers were so understanding and challenged him throughout the year. He loved his classmates and made some really good friends. I saw him grow a few inches this past year and I have a feeling that I will be "looking up to him" by the end of the summer. My twelve year-old son will be taller than me!!! I don't want to even think about that right now.

My #2 had a better year. Each year seems to get better and better. He is such a smart boy and I am so proud of him. He will definitely miss his teacher next year, but at least she will still be around so we can say hello.

My daughter had the best teacher and best class! I will miss the kids and the teacher. I am hoping that she will have some of them in her class next year. I still can't believe that she will be going into first grade! It's unreal!

My baby is not a "baby" anymore. He is growing up so fast. I love his preschool and I am excited that he will be there again next year. I am not sure what teacher he will have, but everyone at the school is wonderful so I am sure I won't be disappointed.

Kindergarten graduation is this upcoming Friday and I know it is going to be a bitter-sweet day. When I look back on this past year it's hard not to think of all the sweet and precious moments that we will never get back. However, I am also looking forward to the future. My kids are all very healthy and strong. When I think of all the struggles we went through about this time last year, it makes me appreciate my many blessings. I will treasure every moment and try to remember that this time in my life is a blessing.
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They say time flies when you're
having fun..... so, where does
it go??
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The Exceptional Child

2009-05-16T18:27:00.000-07:00

Everyone dreams of having a child who is brilliant.....a "baby Einstein". However, sometimes having a child who is "gifted" can be just as challenging as having a child who has learning disabilities. I have had to make some very difficult decisions concerning my #1 and his education. It has been a challenge all his life trying to find the right school for him. Weighing his social progress and balancing that with his academic achievement and potential has been even harder. We don't want to hinder his progress, but we also don't want for him to feel like he doesn't belong because he is so much younger than his peers in the classroom.

I want to recap on my son's past because I think it's important to know in order to understand what I am about to discuss. First of all, he was a normal and healthy baby until about age three when we noticed that he had more energy than the typical child. He couldn't behave in preschool and the teachers all told me he had all the signs of ADHD. I took him to a psychologist who confirmed the diagnosis. We placed him in a different school each year from that point on (trying to find the perfect fit) until second grade when I decided to homeschool. We knew that he was smart. When he was three years old we bought him his own computer because he knew how to use it from the time he was barely two! We bought some preschool software and noticed that he was mastering the math and English sections very quickly. By the time he started kindergarten he was already reading, subtracting, adding, multiplying, and doing fractions. He could also read a clock with hands. In first grade his teacher was shocked when he told the cafeteria how much change he needed back after purchasing his lunch with a $10 bill. When I homeschooled him I realized that the reason he wasn't "behaving" in school was because he was extremely bored. We finished second and third grade in less than a year. In math he was actually doing some pre-calculus. He loved the idea of "imaginary numbers" and he LOVED graphing and geometry. He was like a sponge and I couldn't keep up. It was as if a young man was trapped in a kid's body and I could sense the frustration.

After attempting traditional public school for a couple years we decided to put him in a special school that was known for many things, including teaching children who were extremely bright but who did not fit the "mold" of traditional thinking. This past year has been the best year for our son. He has done extremely well academically and his self-esteem is now soaring compared to last year. That is what we had hoped this new school would accomplish. However, by the middle of the school year I was made aware that he was progressing at a far faster rate than we had anticipated. He was having to go to the High School classes in order to be properly challenged. I did not have a problem with this since he was still with his "peers" during most of his social time. He also seemed to enjoy being around the older kids.

Well....when I met with his teacher and the Director of the school last week I was told that they did an extensive test on him to see what grade level he was testing at for various subjects and to give us a better picture of his academic progress. This was a test they did not get to do often. The director knew that he would test high, but I have to admit that I was shocked when I saw that he tested at >13 grade level for all of his subjects except for writing where he still tested way above grade level for NEXT year! The thing that blew my mind was the fact that he was already at a grade higher than he was supposed to be since we basically "skipped" third grade in public school. In my heart I knew what was about to happen next.... it was a most dreaded decision and one I knew I should not take lightly.

The Director told me because of the schedule for next year, there was no way to work high school classes into his 8th grade schedule. We only had two choices. Choice #1 was to go ahead and put him in 8th grade where he would not be challenged. Choice #2 was to put him in High School and promote him to 9th grade. I did not want to have to make this choice. My first question, of course, was if they thought he would be ready SOCIALLY. They assured me he was. My next concern was if they could work out a way for him to be with his own age group at least part of the day in the beginning. They told me they could work it out during the last two hours of school. He could either be a peer tutor or teacher assistant. They would call it his "elective" and they would do it for as long as he needed to help with the transition.

I went home and discussed it with my husband. He and I weighed the pros and cons. We also discussed the possibility of homeschooling him. However, my son had expressed to us how much he loved this new school and that he loved it better than homeschool. We ultimately decided that we had placed him in this school so that he could excel. He had proved to everyone that he was ready to go forward and so why should we hold him back? Our plan was to place him in magnet high school the following year and this was the perfect plan to prepare him for that. The last determining factor was our son and what he thought. I had a candid conversation with him and asked him point blank if he would be okay with going to high school next year. His face said it all! He smiled and said he would love it. That was that. He still needs to "apply" and get two letters of recommendation and submit a statement of intent. (The Director explained that they do this with all students to make sure they know the significance of moving to the High School and that it's truly THEIR choice to be there. Also, there are some things they will be giving up such as sports, dances, a HUGE prom, and misc. things that other kids get in public school.) Once he gets all the "red tape" done he will be set.

We have known for a very long time that he has always been an "underachiever" and had not been able to prove to everyone his TRUE potential. Even when he went to Magnet Middle School he never had to study. He was the type of student who could just listen to the lecture and absorb it like a sponge. At times (I was told) he would even CORRECT the teacher. He does that even to this day! His grammar teacher told me one day that he had corrected her during class. I was mortified!! However, she reassured me that he was very respectful about it and that he was actually right! He never seizes to amaze me.

Words can't begin to explain how proud I am of my son and all he has been able to overcome. He is growing up to be a kind, compassionate, caring, and wonderful young man. This past year he has proven to me that he can achieve any goal he sets his mind to. He has high ambitions to be a doctor, and I know that if that is what he wants to achieve then he will. I know his mind was a gift and it's up to me and my husband to nurture that beautiful mind of his. All we can do at this point is make sure that doors are open for him and if he chooses to walk through them then the rest is up to him.
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Intelligence is knowing more
than is expected............
Wisdom is taking full
advantage of it.
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Swine Flu (Part II)

2009-05-07T12:22:00.001-07:00

Okay.... I didn't want to say, "I told you so...." but NOW the media is saying that the "Swine Flu" is not that big a deal. Really? It was all over the media and the flu was on the Pandemic watch, but it is no big deal. NOW they are letting kids return to school and resuming normal athletic events. That's so interesting.

What's even MORE interesting is that they are STILL going to make vaccines for this particular strain. This means that they might be short on other flu vaccines for next season. Does that make sense?

Something else to think about is that they are saying this strain of the flu is actually MILDER than other strains which claim thousands of lives each year. That is so interesting to me.

Shall I go on? I don't think I will. I think most Americans are smart enough to see what is happening here. The media has WAY too much power (in my opinion) and it's scary to see what can happen. The only "truth" we know is what we happen to experience and see for ourselves. We can't let the media dictate to us how to take care of ourselves or our families. We need to use common sense and do our OWN research if necessary.
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We are all so much
smarter than we realize.
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The Ten Virgins

2009-05-06T16:48:00.000-07:00

Many of you are familiar with the parable of The Ten Virgins. I have been thinking about that a lot lately. Maybe it's because of the sign of the times? Maybe it's because in many ways I don't feel ready? Either way, I think that we need to make sure that we all have plenty of oil in our lamps because the future is unsure right now. With that in mind, I think it's important that we also prepare our children. This post is going to discuss that very topic.

The first thing I think of is spiritual preparation. Not only does this include religion which is very important, but also being the kind of individual who can see beyond themselves and today. Our family attends church regularly and that helps so much in ways we can't even see right now. I know how hard it is.... believe me... to get up early and get kids ready to go to church each Sunday. However, I can definitely tell the difference when we get home. I can definitely feel the spirit and the following week is so much better. Service is a way to teach your children compassion and many other life lessons. We encourage our children to do service for others (including family members). In fact, this is a huge part of our religion and so I am thankful for that. Our oldest pays tithing on money he earns and that is such a big sacrifice for someone who doesn't make very much. He also donates money to organizations such as Unicef. The scouting program is also a big part of my boys' life. My oldest is about to become a Life Scout and my #2 is a Cub Scout. They have learned self-reliance as well as leadership skills that they will take with them throughout their lives.

The next thing that is important to teach our children is self-worth. When a child knows that he is loved then he is less likely to look for it in the wrong places. I see this happen time and time again. There are so many children who start doing drugs or get caught up in trying to do what is "popular" and it only leads them down the wrong path. I just pray that I am doing a good job teaching all of my children that I love them and that they have a Heavenly Father who also loves them very much.

Another thing that is important in preparing for the future is teaching children about the value of money and the value of work. There are so many children who are going to grow up and have the shock of their lives when they leave home and have to enter the work force. They are given everything without having to earn it and that sense of entitlement is what REALLY irks me about some young adults today. My children don't get an "allowance" because we have told them that there are certain things we do because we are part of the family. However, I give them opportunities to earn money all the time. My oldest is old enough to babysit and we pay him to help us out when we need it. I think it's important that he know we don't take him for granted and this ensures that he doesn't feel used. Giving children responsibilities, no matter how small they may seem, will teach them about the value of work and give them a feeling of belonging. That's so important.

In our family we value education. The best gift you can give your child is a good education. However, learning does NOT start and end in school. It should be a life-long process that begins in the home and continues on throughout your lifetime. There are so many things we take for granted that we learned through life experiences. It's up to us, parents, to teach our children these important lessons. Our children do not have some of the same opportunities we had such as being able to roam the neighborhood in safety or ride their bikes to the nearby store to get 5 cent candy. We need to teach our children about sex before they learn it from unreliable sources. Also, it's important to teach our children to have goals and how to achieve those goals. Receiving an education should be a top priority.

Teaching self-reliance is so important.... especially in times like these. We have no idea what the future holds and how the economy will be when our children grow up. However, if we teach our children how to mend clothes instead of buying new ones, or how to change the oil or a tire, or how to cook from scratch... those are valuable lessons that they can take with them and use if they need to. One day my boys will be going on missions for the church and I hope that they know how to do their own laundry, cook for themselves, and how to scrub a toilet. It's amazing how many grown men do not know how to do these things.

The last thing I want to discuss is kind of hard for me to even think about, but it's a reality. One day I won't be around anymore and I am hoping that it won't be for a very long time. However, one thing I have learned is that nothing in life is certain. We need to prepare OURSELVES spiritually, financially, and temporally for when that time comes. If you haven't already, make sure to prepare a good will. Make sure you have guardians for your children in case the unthinkable should happen to you and your spouse. Try to stay out of debt and save where you can. Make sure you have 72 hour kits for each of your family members. If you are able, follow the counsel to have a year's supply of food. All these things will ensure that no matter what happens, everything will be okay.

Let's not wait until it's too late. We all take it for granted that we live in such a peaceful environment. We have no idea of the wars that are going on around us in the world. We are blinded to the famine and hunger that exists. However, all this could change in an instant. We have heard many people say that things are going to get worse before they get better. We need to listen up!!

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Those who are prepared don't
need to fear.
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The Swine Flu...I'm ready, Are you?

2009-05-01T13:25:00.000-07:00

Okay....some of you are going to think I am crazy... but I am going to jump on the bandwagon. First of all, I am so glad that they finally decided to change the name to Influenza A type H1N1. It was so misleading and I am sure it has hurt the pork industry. This flu has NOTHING to do with pigs giving it to people. The only reason they named it the "Swine Flu" is because genetically it has swine genetic material (among others). That's it! I thought I would post some good information for you all to think about and even a link that shows where the confirmed cases are in the world (very interesting). Secondly, I know that for some reason it seems to be more prevalent in Mexico right now, but that doesn't mean you need to stop eating at Mexican Restaurants. That's absurd!

I want to start off by saying that this "new virus" is actually Influenza Type A (which is the one my daughter got this past winter). The reason it's making the headlines is because it's a new strain of it. As many of you know, new strains of influenza make it into the U.S. every year and that is why they have to change the Flu Shot to keep up with it. Of course, it doesn't always work. (We won't get started on that discussion right now.) So.... basically we should ALL treat this like we would the Flu. We don't need to be getting all worked up about the word "pandemic" because that just makes it sound like that couldn't happen with any other Flu... it can!

The biggest defense against the Flu is hand washing and covering your mouth when you sneeze. I am so tired of people just using hand sanitizer. That's okay if you have no other choice, but washing your hands really well with soap is the better choice. The next thing you need to do is STAY HOME if you're sick! Don't send your child to school on Tylenol (I know we all have done it in the past... don't pretend you haven't). Now is definitely not the time to do that. They have already reported over 400 schools closing around the United States alone. (I am so glad we are near the end of the school year around here.)

The following is the tracker for the Flu and you can check on the entire world. It's very interesting.
http://maps.google.com/maps/ms?ie=UTF8&hl=en&t=p&msa=0&msid=106484775090296685271.0004681a37b713f6b5950&ll=32.639375,-110.390625&spn=15.738151,25.488281&z=5

Okay... so now on to the vaccine issue at stake here.... I found some really good information from the Associated Press online concerning this topic. I normally would post the link, but the information is just too good that I MUST share it with you all:
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WHO will take vaccine gamble with swine flu

By MARIA CHENG – 2 hours ago

LONDON (AP) — When World Health Organization officials ask vaccine manufacturers to start producing vaccine to fight swine flu in a few weeks, they will be taking a calculated risk.

Flu vaccine companies can only make one vaccine at a time: seasonal flu vaccine or pandemic vaccine. Production takes months and it is impossible to switch halfway through if health officials make a mistake.

While some countries like the United States may be better prepared than others — American officials say production for next year's vaccine batch is so advanced they're nearly finished — the situation for many other countries is unknown.

About 70 percent of the world's flu vaccines are made in Europe, and WHO is trying to figure out how many doses of seasonal flu vaccine remain worldwide before asking vaccine manufacturers to start pumping out pandemic vaccine instead.

"It's a big decision...We've never done this before," said Marie-Paule Kieny, director of WHO's Initiative for Vaccine Research.

Kieny said the decision would be like guessing which vaccine the world will need most, but that WHO would try to hedge its bets by tallying existing seasonal flu vaccine stocks.

"We are gambling whether or not we will have enough seasonal vaccine, but it will not be an 'either-or' situation," she said.

Vaccine makers can make limited amounts of both seasonal flu vaccine and pandemic vaccine — though not at the same time — but they cannot make massive quantities of both because that exceeds capacity.

The impending decision to make pandemic vaccine will also complicate matters for countries in the southern hemisphere, where the flu season is just starting.

WHO usually makes recommendations about which seasonal flu strains should go into next year's southern hemisphere flu vaccine in September. But if vaccine manufacturers are already making pandemic vaccine in the fall, that will mean fewer doses of flu vaccine for people in the southern hemisphere.

Regular flu kills between 250,000 to 500,000 people worldwide every year. So far, swine flu appears relatively mild, except in Mexico. Until experts know how contagious and deadly the virus is, they won't know how many people actually need to be vaccinated. If it remains mild, it's possible many people won't need a shot.

But if swine flu evolves into a more deadly strain, more shots may be needed to protect wider swathes of the population. Another possible complication is that the pandemic vaccine will be made using the strain available now; whether that will work if the virus mutates isn't certain.

At the moment, WHO has a bit of breathing space. The key component for the pandemic vaccine, the "seed stock" from the swine flu virus, will not be available for a few weeks.

WHO has already put major vaccine makers on alert they may be asked to switch to making pandemic vaccine soon. According to Chris Viehbacher, chief executive of Sanofi-Aventis, Europe's biggest vaccine maker, his scientists are "working around the clock" on preparations for making a swine flu vaccine for when WHO comes calling.

But they too are waiting for more information. "It is premature to forecast how many doses of swine flu vaccine we could produce," Viehbacher said, noting the company needs to see how much antigen, the active ingredient in a vaccine, is required for each shot. If all goes well, the first doses should be available several months after production begins.

In the U.S., the government hasn't yet decided what to order. "It would all depend on how the outbreaks and the emergency unfolds," said Dr. Ruben Donis of the Centers for Disease Control and Prevention, who is heading the U.S.' vaccine work.

Vaccine makers have a few options when it comes to making pandemic vaccine. They could add the pandemic strain to the regular vaccine, but adding that extra strain reduces the number of shots you can make. Manufacturers might also use adjuvants, components used to stretch a vaccine's active ingredient.

Recent work on H5N1 vaccines, the bird flu strain many thought would ignite the next pandemic, may also help. John Treanor, a vaccines expert at the University of Rochester said that adjuvants developed during H5N1 research may come in handy now.

He said public health officials were indeed facing a vaccine dilemma. "There is only a certain amount of capacity for vaccine manufacturing," he said. "One has to make some well-reasoned choices, sometimes based on incomplete information."
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Where do I begin? I can't do it right now. I will have to write about this article at a later date because there are just too many issues at stake here. Plus, I want the time for it to sink in.
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Motherhood... a Divine Calling

2009-04-29T20:56:00.001-07:00

With Mother's Day just around the corner I thought I would talk about what motherhood means to me. Today I met a woman who tried to conceive for 20 years!! She decided not to try medical intervention. She told me that she felt that if it was meant to be then it would happen. She decided to leave it in the Lord's hands. Well... here she was in her 40's and she finally got pregnant. What an inspiration! How many of us take this gift for granted?

I was blessed with four wonderful pregnancies and consequently four beautiful children. Although my first pregnancy and delivery were not a walk in the park, overall it was a positive experience and I delivered a healthy baby boy. That's all a mother asks for in the end. My husband and I were blessed with good fertility and did not have any problems getting pregnant. That is something I never took for granted. It seems like all my life I have been surrounded by friends who have trouble getting pregnant and I never understood it. It made me mad to see these wonderful women who would make awesome parents not be given the opportunity. It made me even MORE mad to see people who did not even want kids get pregnant before my eyes. That was probably the hardest thing for me to understand.

Motherhood is a divine calling and a blessing given to women. We are born with the divine nature that enables us to be loving, kind, gentle, and nurturing with our babies. I see my daughter, who is only 6, already wrapping her dolls in blankets and doing other things that the boys definitely don't do. The differences are so evident. Even those women who don't have children of their own will be given the opportunity to be a part of a child's life. It might be a niece or nephew, a neighborhood kid, or perhaps a child from church. They will have a hand in raising that child and giving them all the love and support that they have to give.

I have a friend who recently adopted a beautiful baby boy (this will make it her second son) and in many ways I think this will be such a special Mother's Day for her. I have to admit that I was a bit jealous seeing her with such energy and being able to enjoy those tender first days and weeks that you can't ever get back. I just remember how tired I was after each of my babies and it definitely took me some time to recuperate. Adoption is definitely one of the greatest gifts someone can give. It's an unselfish act and takes so much courage and love. I can not imagine having to face such a decision. However, I am so glad that so many do and that moms like my friend are given this precious gift and opportunity to be a mother. I know in my heart that these babies were sent from heaven and it doesn't matter HOW they got here, they BELONG here and one only has to see the miracle of adoption to see it. I am so happy for my friend, and I know that she is going to be such a wonderful mom to him.

This post is dedicated to all the wonderful moms out there who don't think twice about putting others before themselves.... who dedicate their time and effort in making sure that their kids are fed, bathed, taught, and loved.... who juggle home, school, spouses, and such.... who wear so many hats I can't even name them all.... and lastly, who are the unsung heroes of the world!!!
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Being a mother is the hardest
job there is....you don't get
a paycheck, praise, or even a
break....but I wouldn't trade
it for anything in the world!
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Wilson's Disease Diet That Works

2009-04-22T17:51:00.000-07:00

I thought it was time to talk about Wilson's again. Since it seems like things are going well for our daughter I thought I would share what we are doing and save some of you the hassle of months and months of research. I am definitely willing to share what I have found. :)

The first thing you need to do is educate yourself on what foods are high in copper. Since I have a medical background I can understand some things that perhaps others can't as far as units of measurement, metabolic pathways, and other things I sometimes take for granted. However, I have found numerous sites that offer tables, charts, and other important information that can be very useful in making it all make sense. The important thing to remember is that sometimes it's not the food that contains the copper, but the way it is processed that makes it dangerous. We were fortunate to get a diagnosis so early and so my daughter has made a smooth transition. She treats anything with chocolate, mushrooms, dried fruit, etc... like poison.

I want to refer you to the mayo clinic website. That is the first site I visited and it has a lot of information concerning Wilson's Disease. This is the link:
http://www.mayoclinic.com/health/wilsons-disease/DS00411

Another website that is fabulous:
http://www.gicare.com/Diets/Copper-Restriction.aspx

yet another:
http://www.wilsonsdisease.org/copper.html

I could go on, but I think you get the idea. There are tons of websites out there and they all have valuable information. All you have to do is google "Wilson's Disease" or "Low Copper Diet" and you will find many more.

One thing I am going to do is meet with a nutritionist soon. I will update you all on what I find out. I think that it's important to make sure that my daughter has a well-balanced diet not lacking in essential nutrients and vitamins.

This is the diet we are currently following: we avoid certain foods such as chocolate, leafy green vegetables such as spinach, mushrooms, nuts except peanuts, beans, shellfish, organ meats or anything that might contain it such as cheap hotdogs, Ovaltene, instant breakfast or "meal-replacement" drinks, whole wheat products, and we refer to charts often if we are unsure.

The good and bad about this condition is that since there isn't an "allergic" reaction to these foods it is easy for the parent AND child to forget or "break the rules" once in a while. I have to admit that on special occasions I sometimes will let her have a bite of chocolate or have a chocolate chip cookie. I don't want her to rebel and go overboard in the future. The main reason I have been so strict in following the diet is because I know how addictive certain foods can be. It's easier for her if she learns now to retrain her palate. I can't even imagine if I had to avoid chocolate. It's one of my favorite things in life and it's a drug of sorts for PMS and other conditions. However, I have learned some substitutions such as carob for her. She loves carob malt balls. They are a little treat we get for her when she is craving chocolate.

Right now my daughter is not on any medicine. I know that zinc seems to work for some people who have trouble controlling the copper absorption. That is something to definitely check into. Another thing that is worth checking is the copper level in the tap water. They don't recommend consuming more than 100 mcg/L of copper. You can either look at the water report or call your water company and get your water tested. We are lucky in our area to have good water with low copper levels. However, we don't take chances and we use only filtered water for drinking. It's yet another precaution that doesn't require too much effort and it's worth the time.

I will try and remember to update you all on the nutritionist information. I am eager to find out if we are lacking in any vitamins or nutrients for our daughter. She is doing great and is growing up so tall. I am optimistic that she will continue to be healthy. Her liver enzymes are improving and I like the fact that for now we are not having to take any drugs for her condition. I am so thankful for the prayers and best wishes on her behalf. They are definitely being heard. I am also thankful for the inspiration and dedication of the doctors we have today.
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Wilson's Disease is not curable,
but it is definitely treatable.
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Confessions of an Autism Community

2009-04-16T07:34:00.001-07:00

I got this idea from a show I watched on television. There is a woman who wrote a book about confessions from mothers and what they REALLY think and feel. I thought it was very enlightening and therapeutic. I thought I would do the same thing except post some things I have heard others say or things I have felt myself (keeping it all anonymous of course) so that everyone can look at it and see that you're not alone and that it's okay to vent sometimes. :)
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"Sometimes I wish I could go to jail for a day to get a break."
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"I love my children to death.... but sometimes I wish I would have waited longer to have kids."
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"My child is so overweight that I feel ashamed and guilty."
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"I know people judge me by my children's actions and that makes me so mad."
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"Sometimes I go into the bathroom and cry."
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"Most days I feel overwhelmed and unappreciated."
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"I have to admit that there are times when I wonder what it would be like to have normal children."
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"Why can't everyone see that I am just trying my best to raise my children in a world that can't understand autism!"
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"I wish that my best friends could wear my shoes just for a day."
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"I love looking at the world through the eyes of my child."
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"I have sent my child to school drugged with Tylenol and/or decongestant before."
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"I have to admit that I cringe when others tell me that their 'normal' children do the same thing."
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"Maybe I'm a bit too touchy, but when my son says hello and it is not reciprocated I get very upset."
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"One of my worst fears is that I will die and leave behind my autistic child with someone who just wouldn't understand him like I do."
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Those are just a few of the things I could recall. Feel free to "vent" if you want. I think it's important for all moms to realize that we are all trying the best that we can to raise our children in this crazy world of ours. No one feels perfect. We all have our struggles we deal with on a daily basis. Parents of children with special needs have some of the same feelings and struggles. However, it's amplified by our own internal voices and insecurities. My prayer is that those things will be reconciled and that we can focus on what's REALLY important.
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I know you and you know me
We are as different as the sun and the sea
I know you and you know me
And that's the way it is supposed to be.
(Primary Song: "We Are Different")
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Autism Society of America Walk

2009-04-09T19:49:00.000-07:00

Today I went to an Autism Walk in my city with a friend who also has a child in the "autism spectrum". I have to admit that I was rather disappointed in the numbers that came. I was expecting crowds of people, and I think there might have been less than 100 people there. The cost was $30 and we got a cute shirt with the Frog mascot on it. I was glad to see families there and there were a few people from our school. I wish there would have been more. How can we expect support if WE don't support one another. That's the main motivation for this post.

Tomorrow they are meeting with legislators to discuss the need for more funding for Autism research. It's important that we all do what we can to let our representatives know that we can no longer be ignored! The numbers are rising each day and some still say there is not an epidemic. They want to dismiss it as "an increase in awareness and testing".... that is so wrong! Let's say for a moment that the numbers are increasing because of better screening methods. If that's the case, then show me all the adults with autism! Well... no matter what they say, the numbers are still increasing and so we STILL need to do something about it. Right???? It's insane to say that we aren't doing anything because there is no proof that the numbers are actually increasing. For the record: the number of autism cases are on the rise and no matter what the cause is, it definitely has MY attention.

http://www.autism-society.org

April is Autism Awareness Month and I wanted to make sure to post the link to useful information. The link above has wonderful ideas and suggestions of things you can do to support the cause. I hope you take the time to check it out.

The formal symbol for Autism Society is the puzzle piece. You can purchase shirts, bracelets, and other products online. The money they make goes towards increasing public awareness, research, and cost of advertising. The important thing to remember is that even if you don't have a child with autism, chances are that you will know someone or that your child will know someone who does. The statistics are 1:150 and some say it's actually more prevalent than that.

The first step towards finding an answer and/or a cure for Autism is awareness. It's a real condition that affects so many people. It's not something that goes away, although the symptoms seem to improve in some cases. I believe that some parents feel like giving up. I don't want that to happen!!! We can't just give up now. We need to fight harder than ever. We have to do it for our children, our grandchildren, and our posterity.
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Now is the time to fight!!!
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Angels and Demons

2009-04-02T06:13:00.000-07:00

Right now I am reading a book entitled "Angels and Demons" and it's written by the same author as The DaVinci Code, which I thoroughly enjoyed. In the book they mention how in the old days they would kill people who called themselves "scientists" and taught things that contradicted principles taught in church. These people were considered crazy. Just imagine for a second a world in which we still believed the world was flat, or one in which the sun was NOT the center of the universe, or perhaps that illnesses were a direct result of God's wrath. Those are things that used to be the "norm" in thinking. Of course, NOW we know all that is not true.

Reading the book made me think about all the changes and modern-day miracles that have been discovered and/or invented. It also made me feel sad about some of the changes that we are experiencing that aren't so good. There are so many things that are going through my mind right now. The first thing is the rise in mental illness in children. The other thing is the changing of medicine. Lastly, is the breaking down of the family unit as we know it today. I will first talk about the rise in mental illnesses in children. Why is it on the rise? That is definitely a good question we need to ask. All you have to do is turn on the t.v. and you will be bombarded by commercials for medications to treat depression, ADD/ADHD, anxiety, etc....the list is endless. It seems like every year we hear more and more of mental illness with children and that kind of scares me. What is going on? What's different about today that is making it harder for parents and kids? The obvious things to me are entertainment, food, and amount of exercise. The other things I thought about were morals taught at home, stable home environment, time spent with family and friends, school, and perhaps the music we listen to. All those things contribute to the type of person we become. It also can explain why there are so many problems with children today. Can that alone explain the rise? I don't think so. There are definitely environmental factors at play.

How is medicine changing? Well... instead of learning to cope with problems we are encouraged by the medical community to pop a pill instead. Instead of learning what the root of our symptoms are, we are given medicine. Instead of preventing illness we are sometimes causing it by the way we live. All these things are so frustrating to me. It seems logical to me that they should teach about alternative medicine in medical school, but they clearly don't. It's considered "quackery" and basically dismissed by doctors. I think if something works, then why not learn more about it? If I was a doctor and my patients were telling me that something was working for them I would totally encourage it and possibly suggest it to future patients as an alternative. However, it's been my experience that there are a lot of narrow-minded individuals in the medical community. As long as the pharmaceutical companies continue to brainwash the doctors and "buy" them with extravagant gifts this is not going to change anytime soon.

The last thing and most important change I have noticed is the breakdown of the family unit. Not only are people waiting longer to have kids, but it seems like a lot of parents don't take parenting very seriously. It's rare to see a family sitting together having a meal these days. That is so sad. I know a lot of mothers who choose to work just to maintain a lavish lifestyle. I think a child would much rather have a mother's time than the latest styles of clothing or electronic game that just came out. This year I am a Room Parent for my daughter's kindergarten class and it's so sad to see how many parents don't take their child's education seriously. It's almost like they expect others to raise their children and educate them as well. The schools are not a substitute for what should be taught in the home. As a matter of fact, I have learned the hard way that I have to work much harder these days to undo what they ARE taught in schools sometimes..... it's not always good.

Sometimes I feel like a pioneer in my own right as it pertains to the medical care of members of my family. There are a few people in my life that totally agree with my thought process and provide more insight. There are others that totally disagree and feel I am insane. At times I feel a bit like the scientists of old who tried to prove their theories and ideas but found a great deal of resistance. In my heart I am a scientist. Although I don't work full-time in a laboratory anymore, I still have it in my blood. I have a innate curiosity about how things work. My laboratory has morphed into my home office and the computer. It includes books, sessions with doctors, and the laboratory results I have organized into files. I also have witnesses and testimony of other parents. It has been a very positive experience for me. It will be my life-long journey and although I don't get a paycheck, I do get a much greater reward..... seeing my children happy, healthy, and strong.
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Sometimes truth is stranger
than fiction.
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Lessons Learned From a Roller Skating Day

2009-03-28T06:59:00.000-07:00

My older sons have what's called "Fun Friday" at school. If they have a good week and earn enough points they get to participate in an activity ranging from going to the movies to being able to play with their Nintendo DS. This week they went to a local skating rink for their reward. It was so much fun!

The last time we went skating with the kids they could barely stay up on their feet. However, I was so proud of them because they would keep getting up and try again. It was especially frustrating for my #2 because his balance was not very good and he wanted to go fast. My oldest did much better and tried to help as much as he could. However, he also had some difficulty staying on his feet so it was kind of comical seeing them out in the rink together. Well....THIS time, it was so different. I was so proud of my boys. My oldest did great and even participated in some of the games they did. My #2 put on his skates and immediately stepped into the rink and skated so fast I thought he was going to not be able to stop. My heart kind of skipped a beat and I ALMOST stepped out into the rink to catch him. Now I am so glad that I didn't. He was so proud of himself and made sure I was watching him. I truly enjoyed watching him. He looked like he was born with skates on his feet. It was amazing!!

I was thinking that there were some major life lessons to be learned from this experience. The first thing is that we should NEVER give up. We can't succeed unless we first fail and that's a hard lesson to learn. It would have been easy for my kids to just give up after all the falls and bruises they had experienced. There were probably around 60 kids there and I did not see a single child sitting or without skates. Some preferred to skate on the carpet while others circled the rink. I thought it was amazing seeing some of those kids who could barely talk skating like "pros" and I was so proud of them.

The second lesson to be learned is that sometimes we need to LET them fall. That is so hard as a parent. I once heard a talk at church and they related the story of how the mommy eagle takes care of her young. It was pretty amazing. The eaglets have to learn to fly and it's not instinctive. Sometimes when a young eaglet is fearful of taking its first flight away from the nest, a parent will withhold food to force it out. That's the way we need to be as parents. I am sure many of you have seen the movie Finding Nemo and that's the lesson that many parents learn the hard way. We will only push our children away or prevent them from reaching their potential if hover over them or make it too easy.

There is another story that I heard at church and it was of a man who asked the Lord to tell him what he should do to be strong and do His will. The Lord replied, "You see that huge boulder over there? I want you to push it." The man kind of hesitated and then decided to do as he was told. He went over and pushed with all his might and the boulder did not budge. He did this for a period of weeks. Finally, he got frustrated and asked, "Lord, I have pushed and pushed this boulder and it has not budged one inch. Why have you asked me to do this thing?" The Lord replied, "When you started you were weak. Now look at you. Your muscles are toned and you are stronger because of the work you have done. The fact that you were obedient in spite of your hesitation in the beginning has also blessed you with faith. Go now, you are now prepared." When I first heard this story I didn't have any children and so I did not comprehend the impact it would have later in my life. Now I totally get it! We only get stronger if we have challenges or obstacles in our lives. If everything was handed to us on a "silver platter", or if we never had to make choices then there would be no way we could grow

The last thing I want to say about our skating experience is that we should not underestimate our children's potential. My children amaze me all the time. They can comprehend things that even some adults don't get. They have taught me more than I can even begin to explain. My #2 has such a sweet spirit. He can be so loving and so empathetic at times. He is extremely tenderhearted and that can be very challenging when others are not so nice to him. Don't ever let a "label" limit your child's potential. There are so many examples of very successful people in history who were told they could not do it. There is a great site: http://www.child-autism-parent-cafe.com
and I urge you to visit it and share it with your autistic child. It has a list of famous people with autism and Asperger Syndrome. Famoust people with Autism: Daryl Hannah, an American actress best known for her roles in Splash, Blade Runner and Kill Bill was diagnosed as a child as being "borderline autistic", Christopher Knowles, an American poet, and Matthew Laborteaux, actor on Little House on the Prairie. Famous people with Asperger: Satoshi Tajiri, creator of Pokémon, Dan Aykroyd, comedian and actor, Richard Borcherds, mathematician specializing in group theory and Lie algebras, Dawn Prince-Hughes, PhD, primate anthropologist, ethologist, and author of Songs for the Gorilla Nation, and Gary Numan, British singer and songwriter.
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Don't ever tell a child they can't.
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Time to Count My Blessings

2009-03-22T17:32:00.000-07:00

There is a song that we sing at church entitled "Count Your Blessings" and the first verse goes like this:
When upon life's billows you are temptest tossed
When you are discouraged thinking all is lost
Count your many blessings name them one by one
And it will surprise you what the Lord has done.

That was the inspiration for this post. I see others and how hard they have it and thought that I truly have nothing to complain about. Although I don't always have it easy and I have my own struggles, there is always someone out there with much heavier burdens. I felt today I would post a "Top 10 List" of my many blessings. I hope it will inspire you to do the same.

#1) I truly have a wonderful supportive husband who loves me and the children. He is a very kind and gentle soul who has NEVER EVER raised his voice to me or showed how upset he was at me. He has NEVER EVER said an unkind word to me. I don't ever take him for granted and I know that he is my soul mate.

#2) I am so grateful for my parents and only brother. They all helped shape me into the person that I am today and there are no words to express my gratitude. My parents introduced me to the church and my brother (although younger) always looked out for me and loved me unconditionally.

#3) I have the most beautiful kids who are full of life!! They know how to live life to its fullest. They each have something special to offer to our family and I can't imagine my life without any of them. I am so glad that I decided to have more than just two children!

#4) Believe it or not, I consider all of my challenges with Wilson's Disease and Autism Spectrum disorders a blessing. I have been able to help so many people and have learned so much about myself through the process. I have met some wonderful people and that alone has been a great blessing in my life.

#5) I have to say that my faith and church are one of the greatest blessings in my life. It has given me strength and faith during some of my lowest points in my life. Also, knowing that I am sealed to my family for all time and eternity is something that is priceless.

#6) All the beautiful things around me that make me smile... including the color pink. It has always been my favorite color and I am so excited to say that my daughter shares that with me. Her room and clothes HAVE to have pink and that's alright by me. :)

#7) Music is truly a blessing in my life. I have been blessed with the gift of song and my father introduced me to the keyboard at a very early age. I loved listening to him play and I know that had an impact on my life. I sing at church, at home, and anytime I can. I also love to play the piano. It is definitely an outlet for me and lets me exercise my creativity. I can not imagine my life without music.

#8) Chocolate, chocolate, chocolate!! I am so thankful that I don't have Wilson's Disease because I can't imagine not being able to eat it. I love brownies and fudge. I love milk chocolate with anything! I also have some very fond memories of making chocolate chip cookies with my children.

#9) My heritage. I am from Puerto Rico and I believe that my background has had a lot of influence on many aspects of my life. I am passionate, loyal to friends, trendy, and love to give hugs. I also know Spanish and being bilingual has definitely been a blessing in my life.

#10) My health. I am able to run and play with my children. I know how fragile our bodies are and how things can change in an instant. That is why I value my health and consider it a great blessing in my life.

I hope I have inspired you all to do the same as I did. No matter what your circumstances are or what trials your may be going through, there are countless blessings to be thankful for. There is another blessing in my life that I must add. I guess it will be my #11... and that is my wonderful friends. I am blessed with great friends that I can depend on. I feel like Heavenly Father knew that I could not do it alone in this world, and so he sent me the most beautiful angels and they have surrounded me all my life. I feel like the luckiest person in the world.
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So amid the conflict, whether great or small
Do not be discouraged; God is over all.
Count your many blessings; angels will attend
Help and comfort give you to your journey's end.
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Vaccines of the Future

2009-03-20T19:12:00.001-07:00

I was reading my March issue of Reader's Digest today and saw a very interesting article about vaccines. The article was entitled "Vaccines without needles" and it definitely got my attention. It basically said that the patch was not just for smokers or cruise-ship newbies anymore. "Intercell USA and Ideo have developed a method of transcutaneous immunization. It's in advanced FDA trials and will target diarrhea, then the flu."

Of course, if you have been following my blog you will know that I can't read something like that and let it go. I Googled it and found a lot of information. I am more than happy to share with all of you what I found. The first thing you have to understand is that the patch has its flaws. I know from experience that it doesn't always work. I have known a friend or two who were on the birth control patch and ended up pregnant. However, I have also known people who take heart medicine via patch and have done it successfully for years. I guess it all depends on how it's administered and how long the patch needs to remain on the skin for the vaccine to work. Also, the efficacy of the patch in relation to vaccines will have to be carefully assessed or else we will have a much bigger problem than the shots.

According to what I have read in the medical journals concerning the patch for vaccines, it seems that the results are very promising. They have actually tested them on people and the process seems very simple. The following is a good link:
http://www.ideo.com/work/featured/intercell
It actually shows the process through a slide show and it's amazing! I recommend you check it out. The part about it that fascinates me the most is that you in theory could vaccinate yourself! There was an article in Business Week that had some good applications for this type of vaccine. "Iomai executives believe that the patch's user-friendly design will catch the attention of the U.S. government, which has been looking for products that can be stockpiled and distributed during a much-feared outbreak of pandemic flu. With needles out of the picture, Iomai's product could allow patients to vaccinate themselves—eliminating the worry of overcrowded emergency rooms and overwhelmed physicians." That is something I had not thought about.

The way this vaccine works is that it penetrates through the "dead layer" of skin cells and makes it way to the Langerhans cells. This causes an immune response and then you are protected. It definitely sounds "too good to be true" but I am hopeful. Because of the way it's designed I would imagine that it would be harder for contamination to take place, and since it's manufactured in "single doses" that would mean that it would require less preservatives. Of course, I know very little about this vaccine so I am just giving my opinion. I will definitely keep my eyes and ears open and let you know if I find out anything new about it. I am definitely excited about the future!
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The future is limited only by
our imagination.
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Three Girls at a Pizza Place

2009-03-13T11:57:00.001-07:00

Recently I planned on going to an Autism Support group in a nearby city with three other ladies. In the end, one of them got the flu, and the rest of us decided that we were not interested in the topic they were going to cover because it did not relate to our specific cases. They were going to basically discuss issues dealing with children with severe autism. Therefore, we decided to stay in our area and eat at Mellow Mushroom (a very yummy pizza restaurant). We were there from 4:30pm until 8:45pm and there was never a break in our conversation. We talked the entire time! This post is a recap of what was discussed and some interesting information that I did not know.

It seems that in all three of our cases our husbands and family were skeptical about anything being wrong. I think this happens a lot. Part of it is denial. The other part is ignorance. It's hard to admit that there is anything wrong with your child. With grandparents there is often a sense of guilt associated with it as well. It's as if THEIR genes were the culprit or something. It's almost ludicrous to think that people would think that, but they do. It's human nature to place blame on things like this. I just thought it was interesting to hear how each of us found out.

Case #1: The baby girl was born with a heart defect and at only 3 days old she had to have surgery. She was sent home after just one week and she recovered very well. For the next few years everything was basically ignored because it was attributed to her health. However, the mother knew that something was not right. Her daughter was very sensitive to sounds and she was not communicating like she should. She was also having issues with her gut. She decided to take her child at age 4 to get evaluated at a clinic that specialized in autism. Her daughter was diagnosed with autism and sensory integration issues. The mom finally felt validated. Although the husband is still in denial, they follow the casein/gluten-free diet and have recently learned that she is also sensitive to corn. She explained that the diet is going well and that she is on the road to recovery. She has an optimistic attitude and feels that she has had to go through this road alone since no other doctors had answers for her.

Case #2: The baby girl was born with cleft palate. She had surgery and although she had to have some speech therapy early on, she is doing great now. She has behavior issues at school and is sensitive to noise. She has not been diagnosed yet, but they suspect she is in the autism spectrum. She is waiting to see specialists at a nearby clinic that specializes in diagnosis of autism spectrum disorders. The father is on board and is supportive. He wants a label. The mother just wants to know what to do. She follows a "healthy" diet and tries to avoid processed food, dyes, and sugar. She feels the same way about the doctors not having any answers for her. Every test and treatment she has done has been initiated by her. She definitely feels frustrated.

You all know my case, so for sake of time and space I won't discuss that right now. The similarities are obvious. I thought it was definitely something beyond coincidence that brought us together. There is no doubt in my mind about that.

The diet factor was of interest to me. We tried the caseine-free diet with my daughter and she seemed to respond to it. I thought about trying out with my youngest to see if I noticed any changes, but it's such a difficult diet to follow, and I don't have any reason to do it with him anyway. My #2 did not seem to respond to it when we did it years ago and so I don't think it would be worth the trouble to try it again. In Case #1, the mom (let's call her Bethany) said that she noticed changes right away. She has done a lot of research to find recipes and supplies to feed her child. The biggest challenge is finding the right products. Labels can be so misleading. She told me that she has had to actually call the manufacturer and get information concerning ingredients to ensure that they were truly "gluten-free" or "caseine-free". She has been disappointed at some of the companies. She also told us about how intolerant a lot of parents can be when it comes to things like this. She said that she has been told she's crazy for not letting her child have cake and ice cream. I think that's so sad. It's hard enough for her to follow the diet and then to add that to her pressures... that's so unfair. You can't say they are "allergic" because in reality they aren't. However, they DO have food sensitivities and that is basically what she says. Parents who can't understand that are just ignorant. If it were THEIR child, they would not think twice about it.

One of the most frustrating things that is common among the autism community is finding the right doctor. Bethany had tried different doctors in the area until she found the same group that I found. Fortunately, for her, she found them early on. She said that at first they were skeptical about the whole "casein-free" diet, but when they saw the results NOW they actually recommend it to patients as something "to try" and use her as an example. I think my timing coming into this practice was perfect!! This REALLY made me feel better about going through what I did. I am now seeing them at a time when they are more open to alternative medicine and alternative therapy. That's so exciting to me.

Bethany went to a DAN doctor in a nearby city and told us a little about how that went. For those of you who don't know what a DAN doctor is... DAN stands for "Defeat Autism Now" and this is a good site that explains in an unbiased way what it's all about: http://autism.about.com/od/alternativetreatmens/f/dandoc.htm
They basically give parents hope. In many cases they see dramatic results and although there is not a "cure" for autism, these doctors offer treatments that other doctors refuse to try! I don't think there is ONE way to treat autism. The only thing that traditional medicine can offer parents is drugs to help relieve symptoms and to manage behavioral issues. In some cases the drugs make things worse. DAN doctors have a different mindset when it comes to treatment and they look at it as a damage that needs repair versus a genetic condition that has no treatment or cure. That is so important because early intervention is critical. If a doctor has a "wait and see" attitude then you are not going to like what you "see" later on.

With Case #2 the mother (let's call her Tina) was so frustrated in the beginning because the doctors basically told her that there was nothing wrong with her child. She coincidentally went to the same group I am going to now, and she still goes to them. In spite of the lack of aggressive action she still felt that they listened to her when she expressed concerns and in the end recommended that she get tested. They still didn't think anything was wrong, but they said, "it won't hurt to do it for your peace of mind". She is so glad she did because she was able to get her into the Early Intervention Program and there is now a paper trail that will enable her to get services for her in the future. She told us that she lucked out and got an appointment to see doctors at a place called Sparks Clinic in Birmingham, Alabama during Spring Break because someone had cancelled. I am anxious to hear how it went and what the results are. I will try and update you all when I find out.

All three of us see the same doctor. All three of us had the same experience with our previous doctors. All three of us were in the end validated after years of worry. It's so unfortunate that we all had to go through the same struggles and disappointments to reach the point where we finally have some hope. It's unreal how ignorant doctors are when it come to autism. One would think that more doctors would listen to patients and try to find out more about autism... especially when the rate of autism is increasing at such an alarming rate. If the rates keep growing like they are... before long, half of the children coming into a pediatric office will have some form of autism or neurological deficit. If you think THAT'S hard to wrap your head around... then consider these statistics:
Approximately 17 percent of children have some type of developmental disability, including more mild conditions such as speech and language disorders, learning disabilities, and ADHD, which appear to be more common than autism. (Information from : http://autism.emedtv.com/autism/autism-statistics.html)
The following is the highlights of statistics I found online:
The following data was produced by the Department of Education in the United States for numbers of children ages 6-21 served by IDEA (Individuals With Disabilities Discrimination Act) who have autism:

State.....(1992-1993)......(1999-2000)....%Increase
Alabama.......68...............670...........885
Arkansas......30...............560..........1,767
Illinois.......5..............2,435........48,600
Maryland......28..............1,551.........5,439
New Mexico....16................193.........1,106
Nevada.........5................273.........5,360
Wisconsin.....18..............1,445.........7,928

In case you can't believe your eyes..... let me explain it to you. The chart has ALL the states and I just posted SOME of them. For example, between 1992 and 1993 there were only 68 children between the ages of 6 and 21 who were served by IDEA in the state of Alabama(that doesn't include ALL cases, but just those who received services). Between 1999 and 2000 the numbers rose to 670! That is an increase of 885%!! If you look at Illinois, the increase percentage was 48,600%!! The numbers are unreal! I am trying to find some more recent data and when I do, I will make sure to post the information. I can only imagine the numbers for 2008!

I think it's important for everyone to realize that this is not an isolated problem. It's not just the parents of these kids. The way they are cutting back on education and programs, I am just holding my breath about those with disabilities. I would pray and hope that the new president would not EVER cut back on those type of things, but there is no way of knowing at this point. The most important thing we could do right now is notify our congressman/congresswoman about this important issue. We need to let our voices be heard. There are many stories left untold, but the important thing is that the facts speak for themselves. They can no longer ignore it and we need to make it harder for them to ignore the children!
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This little light of mine.....
I'm going to let it shine.
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Are You on the Fence When it Comes to Vaccines?

2009-03-11T17:59:00.000-07:00

I would like to thank someone (not going to mention any names) for a wonderful hour-long conversation. I learned so much and I hope I can remember even a fraction of what we talked about.

If you have been reading my posts since the beginning, then you already know my stance on vaccines. The short explanation is that I believe in vaccines and that they work, but I don't think they are completely safe and we should be cautious. I also feel that medicine is not 100% correct 100% of the time.

There are many individuals who just don't know what to do about vaccines. They are torn because they know that they are taking a risk if they don't vaccinate, and a greater risk if they do. There is a sense of guilt involved in the decision process. Of course, doctors will feed on that. They often will guilt parents into vaccinating. That was the case with my previous doctor.

On the other hand, there are those individuals who have decided whole-heartedly that they will either vaccinate or completely refuse to vaccinate. These individuals have a strong testimony and no matter what you say you can not change their minds. They will back up their claims with solid evidence and state their case. I have seen this on both sides.

Well....there is also a growing number of people who are on the fence when it comes to vaccines. It has been interesting hearing the different stories of why people either stopped vaccinating or else they resumed vaccinating. It usually involves something that happened to their child. You can't dispute something when it happens to YOU. It's one thing to read about a child who dies because of a reaction and another thing for it to happen to you. During my phone conversation I learned of a lady who happened to be a nurse who had a child contract one of those vaccine-preventable illnesses..... I believe it was Pertussis. She spent two months with a sick child. They had to stay up during the night and make sure they didn't choke on the mucous during the coughing spells. It sounded very scary. Up until then she had chosen not to vaccinate her children and so she felt very guilty that this happened. I can only imagine.

The facts are that parents just want to do what's best for their family. We all take some sort of risk each day when it comes to the health and well-being of our family. It's up to us, the parents, to weigh those risks. It's definitely not an easy task, but parenting is NEVER easy. The important thing to remember is that YOU feel comfortable with whatever decision you make. You all know what decision I have made, but not everyone would feel comfortable doing it that way. I have learned to keep an open mind when it comes to things like this. I definitely DON'T look down on anyone who decides to vaccinate. I also don't look down on anyone who decides NOT to vaccinate. That is such a personal decision.

That being said.., IF you vaccinate and something DOES happen, then you have to face the consequences. The same way that if you don't vaccinate and something happens you will also have to face the consequences. Each family is different and has different circumstances. It's not a one size fits all deal. I think the most important thing to do is to remain informed. That is the only way you can make an educated decision. It also helps when you have to face doctors, family, or friends about your decisions. It never hurts to have some "ammunition".... does it? ;)

What do you do now? It's easy to become obsessed with this decision. Believe me... I know! However, learn as much as you can. Don't do something because it's the "popular" thing to do, but because it's the RIGHT thing to do. As far as I can see, no one has the answers. The medical community is split when it comes to admitting the truth. There are a few doctors who have the guts to stand and say, "More research must be done... we owe it to our patients to find out the truth."
If you are on the fence when it comes to vaccines I definitely can't blame you. It's a scary decision. Just know that you aren't alone. I hope this blog can help you learn more and make an informed decision. My goal is not to scare parents but to educate them.
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My prayers are with you all.
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Autism is Not Contagious

2009-03-10T18:03:00.000-07:00

I have to thank a good friend of mine who gave me the inspiration to write this post. I think it's long overdue. I can't believe I haven't touched on this since one of my first posts! Here we go............

When I was younger I was taught that it was not polite to stare or to point. You'd be surprised at how many ADULTS I see doing just that! Worse yet, I have witnessed many times when adults just ignore certain kids as if they are not there. I got to thinking about that and I think I know what the problem is. They probably don't know what to say or are worried they might say the wrong thing. I think it's important to let others know how to handle certain situations. I will touch on those that I have observed and have unfortunately experienced personally.

Scenario #1:
You are at a public place and see a child who looks or acts different. They approach you and your child (who is "normal") says, "What's wrong with him/her?" What do you do?
Solution: Whatever you do, don't ignore the question or the child. I think it's important that children know that there is nothing wrong with asking questions but they need to learn how to do it discreetly without hurting other's feelings. The best way to handle this situation is to say something like, "We can talk about that later.... Right now, let's find out what his/her name is. I bet you two can be friends." Later, when the time is right then you can explain things to your child. That will also buy you some time to figure out the best way to explain the handicap to your child. You can also explain how it's rude to point out differences of others.

Scenario #2:
You are approached by a child that you don't know and they give you a hug and possibly say, "I love you."
Solution: Don't be offended. Children with Autism and other disabilities often confuse "like" with "love". They are also learning about personal space. The best way to handle the situation is to accept the hug for what it is and say something like, "You're so sweet. Your mom is lucky to have such a sweet kid." Chances are the mom will be mortified and possibly reprimand the child later. The worst thing you could do is push a child away and make the mother feel worse than they already do.

Scenario #3:
You are at a playground and notice a child who is trying to play with your child. He/she is obviously socially delayed and your child is being mean or ignoring the requests to play.
Solution: This is the perfect opportunity for you to teach your child about being a good friend and accepting others. You can't ignore this kind of behavior. The only exception to this would be if it was obvious that the other child was being abusive or intentionally trying to hurt others without parental correction. You can tell your child, "Sweetie....I would like for you to be a good friend and include him/her. How would you feel if you tried playing with someone and they ignored YOU?"

I could keep going, but I think you get the general idea. The first rule is to not ignore the children of others. This goes for any child. Learn to embrace other's differences. It's not too hard to see the positive in any child. Also, it's not going to hurt your child to play with kids with handicaps. It's important to learn early on that we aren't all perfect. One day your children are going to grow up and become adults. I had to work with adults with autism, blindness, and many other handicaps during my lifetime. They all contributed many things to society. Although there is a stigma of sorts associated with any mental illness or handicap, there is still even more that we just don't know. I think that children with autism were put on this earth for a reason. They are here to teach us tolerance and love. I also think that they see the world in ways that we don't understand. Although it's a true challenge for these individuals, I am sure that there are many creative and inventive things we would lack without some of those people on earth.

My friend who inspired this post said, "Sometimes I think people treat my child as if autism was contagious or something." I am here to tell you that it's not. These kids need the social interaction with other "normal" kids just as much as they do. Also, the best way to support these very stressed-out moms is to show that you care. Don't be judgmental and critical. You only see one little moment in their daily lives. You have no idea what a day is like for these parents. It's definitely a roller coaster of emotions. Some days are good. Others are not so good. In the end, we are all parents who just want what's best for our children. I think it truly takes a village to raise a child. Just remember these things next time you meet one of these special kids.
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Let's try and make love contagious!
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Doesn't Make Sense to Me

2009-03-05T08:44:00.000-08:00

I have a list of sites on my blog on the left-hand side of the screen. I wanted to explain their significance and invite you all to visit the sites and read the information if you haven't already done so.

I will start with the CDC Website. When you click on the link it will take you to the official CDC wesite. I had the wrong link up until now... I finally fixed it. I basically did the "legwork" for you and found the exact spot where they have all the vaccine ingredient information. Let me direct your attention to the first thing that stands out to me: "All routinely recommended pediatric vaccines manufactured for the U.S. market contain no thimerosal or only trace amounts." Doctors claim that ALL routine recommended pediatric vaccines have NO thimerosal (a.k.a. mercury), but yet they clearly state in the website that some contain "trace" amounts. They recall products containing trace amounts of lead or mercury all the time.... yet, vaccines don't have the same criteria? If you take "trace" amounts and multiply it by the number of vaccines that children get before school age... the amounts are staggering!! Doesn't make sense to me.

The next thing I would like to point out is the list of ingredients in vaccines. They are listed under the heading: "Additional Facts". These are the ingredients: Aluminum, Antibiotics, Egg Protein, Formaldehyde, Monosodium Glutamate (MSG), and Thimerosal. Out of all these ingredients the most disconcerting to me are: formaldehyde, MSG, and Thimerosal. I go OUT of my way to avoid these things for my children and yet the government mandates I introduce these things into their bloodstream. Doesn't make sense to me.

When you click on the VAERS link on the CDC website, you might be surprised to find out that the CDC is currently investigating all kinds of things concerning vaccines. However, you might be more surprised to find out how they do it. For example, they did a study to find out if thimerosal exposure had any neuropsychological outcomes. They evaluated 1,047 children aged 7 to 10 years (all basically randomly selected from a computer) who received vaccines in the 1990's before the removal of thimerosal. "Each child's level of exposure to ethyl mercury was determined through a review of electronic immunization registries, medical records, personal immunization records, and parent interviews. Each child was then administered a series of standardized neuropsychological tests in a clinical setting at ages 7 to 10 years. The study found only a few statistically significant associations between exposure from thimerosal and neuropsychological functioning. The weight of the evidence from this study does not support an association between early ethyl mercury exposure from thimerosal-containing vaccines and/or immunoglobulins and neuropsychological functioning at ages 7 to 10 years." OKAY..... I have to interject my thoughts here.... First of all, is 1,047 children a good sample? NOT!!! Another question, why didn't they evaluate kids who HAD autism or other neurological disorders??? If I want to find out why a group of individuals have a disorder or disease I would like to find out what the common factor is. Do they all live in the same area of the states? Do they all eat similar diets? Were they all exposed to same things? Do they all have a genetic defect? I don't just randomly select a thousand kids and test them for problems. When I read further I also found that only a "total of 378 statistical tests were conducted" and that is NOT a significant number. I don't see how they can get sufficient data. Besides, they DID find some "statistically significant associations between exposure to thimerosal and neuropsychological functioning..." Why don't they explore that further? What if there is a small portion of the population that is affected? I would compare this to an allergy. Not all kids are going to be allergic to eggs, for example, but those that are can't have certain vaccines. That doesn't mean that all parents are going to "freak out" and not vaccinate! They have to come up with a screening tool for parents. We have the technology and we have the evidence... what gives??? It all just doesn't make sense to me!

The Huffington Post link has information that made me question if autism is truly "autism" in some of the cases? Are they misdiagnosing vaccine injury with autism? At this point in time, my theory is that if a child is vaccinated and has "autism-like" symptoms and then either slowly recovers or the symptoms go away, then it might have been vaccine injury. In some cases, the kids don't recover and that's also a reality. However, if a child is born with "autism" and/or if the symptoms of autism become apparent early on before the age of 18 months to 2 years, then perhaps it is more of a genetic thing combined with environmental factors. I think that is why there is so much confusion. Also, to add to the confusion... I have a theory that perhaps vaccine injury presents itself in different ways with individuals. For example, perhaps one child might have "autism-like" symptoms, while another might have "ADHD-like" symptoms, while yet another might have chronic ailments such as asthma, severe allergies, or gastric/intestinal problems. All I know is that according to the evidence there seems to be more evidence showing that vaccines can cause problems versus that they are completely safe. All I can say is...it doesn't make sense to me!

The Last thing I want to highlight is Russel Blaylock's paper that I have a link to on the same listing as the CDC website. It was published in 2004 and discusses the meeting called: "Scientific Review of Vaccine Safety Datalink Information." This conference, held on June 7-8, 2000 at Simpsonwood Retreat Center, Norcross, Georgia, assembled 51 scientists and physicians of which five represented vaccine manufacturers. These included Smith Kline Beecham, Merck, Wyeth, North American Vaccine and Aventis Pasteur. This one got me thinking about the cummulative affect that vaccines might have. No one has done a study on that and I believe it's long overdue! Also, why do they have to make the vaccines one sized doses? Medicines are not given that way and it makes sense that vaccines should not be given that way either. I urge you to read the paper.... it will definitely get you thinking. I just don't understand how there could be so many "uncertainties" and yet they are "certain" that vaccines don't cause harm. It just doesn't make sense to me!
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Take the time to check out the links.
You won't be disappointed.
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Got The Flu?

2009-03-05T07:53:00.000-08:00

As I write this post I am praying that I don't end up getting sick. Right now my daughter has the Flu and is starting to recover. Her red face has been replaced by slightly rosy cheeks and she's able to open her eyes and watch television. Her appetite is slowly coming back and she's asking for water. That's definitely a move in the right direction.

It all started when she came home from school on Tuesday with glossy eyes and rosy cheeks. I could tell that she did not feel well. She was supposed to go to ballet but didn't feel up to it. That was a big "red flag" because she usually will not miss ballet for anything! I put her in bed at around 5pm and she slept until the next morning. The next day she stayed in bed the entire day and her fever would not go away even with Tylenol. I decided it was time to take her to the doctor. I took her half-asleep and they did the nasal swab and throat swab to test for strep and the flu. The results came back positive for the Flu type A. I was surprised because the only symptom she had was a fever. She didn't have a cough or sore throat. Her ears did not hurt. However, by the time we saw the doctor she started complaining of her ears hurting a little.

I talked to the doctor about my options. He basically said that drugs would really be a waste of my money since they basically were for Type B Flu and that basically I should just let it run its course. She wasn't really THAT sick and so he felt good about her recovery. He cautioned me about giving her too many over the counter meds and told me to let her rest. The last advice they gave me was to make sure she got plenty of liquids... the more, the better. I stopped by my local CVS and got some ginger ale. When we got home I gave her a cup to drink and then put her in bed. She slept until this morning.

I noticed by 9pm last night that I was starting to feel feverish and achy. One of my friends told me about a drug called "oscillococcinum" and how it seemed to work for her. She told me that within 6 hours she saw her child get better. I thought it couldn't hurt and it was homeopathic so I wouldn't have to worry about drug interactions with the little Tylenol I gave her at night. It works similar to Zycam which helps relieve symptoms but doesn't really "cure" the illness. It's also a good preventive med. I went to CVS and purchased a box and gave my daughter half the dose and took the other half. I am not kidding you when I say that within an hour I felt great!! I don't know if it was a coincidence or not, but this morning I felt a little yucky again and so I took another dose and gave another dose to my daughter and we both are feeling great right now. As I write this post, my daughter is actually up out of the couch and looks great!! Amazing!

I hope and pray all of you reading this do not have to fight the Flu. However, it's exciting to know that there are meds out there that actually work against the flu. The best preventive medicine is hand washing! I have been mindful of this lately. For example, the other day I went to the store and did some grocery shopping. I decided to get some food from the deli and take it home. When I got home I was about to start eating when all of a sudden I realized that my hands had been on the germy shopping cart and I needed to wash them. That is just one little thing that we can do to help prevent getting colds, flu, etc... It's a good idea to teach your children the same thing. Hand sanitizers are good for when you are on the go, but hand washing is truly the best preventive medicine.
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The proof is in the results.
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Medical Insurance Roller Coaster

2009-03-04T09:03:00.000-08:00

Here we go again.... it looks like they decided to cover our laboratory testing for now. We never received the itemized bill for our family. I am sure there is a good reason for that. However, the statements they sent don't have duplicate charges on them... very interesting, huh? Maybe it was the not-so-sweet letter my dear attorney husband sent them? Maybe it was my 50+ phone calls to their office? Or maybe it was the fact that they FINALLY received the information from the hospital that they have been requesting since April of last year? Who knows?

Instead of the thousands of dollars they claimed we owed, we started receiving bills for $35.00. There are a couple of $540.00 bills that we are waiting on, but at least we aren't in collections anymore. That was my biggest complaint about the whole process. It seems that they can send someone to collections even though it's the insurance's fault and ruin your credit. I can understand if I NEVER called them or ignored the bills. However, I was totally the opposite. I called them numerous times and let them know what was going on. They assured me that everything would be okay. Here we are almost a year later and the hospital has not been paid.

If I knew then what I know now would I get the testing done? Absolutely yes!!!! It was more than a diagnostic test. It was our peace of mind knowing that our family was safe, and we did not have to worry about Wilson's Disease with any other member of our family. Wilson's Disease is totally treatable if it is caught early enough. If left untreated, it is fatal! Nobody can understand the feeling you go through when you find out that your child has a potentially fatal disease and that the insurance company could care less about it. I repeatedly reminded them that if we did not catch this now, we would have been faced with hundreds of thousands of dollars because she would have needed a liver transplant.

I am thankful for the Lord's mercy and guidance through this process. There were times when I wanted to give up. However, every time I looked into my daughter's beautiful blue eyes I would be reminded of what was at stake. Even when the doctors tried to convince me that she was okay I persisted. Even when one pediatric neurologist told me that I was misled by a "quack doctor" I did not listen. I no longer wonder what helped me through this. I know without a shadow of a doubt that my loving Heavenly Father had a hand in the diagnosis and the health of my child. Medicine and religion CAN coincide. I know this to be true. I also know that there are some awesome Christian doctors out there who are guided by the spirit. I am blessed to have found such doctors.
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My belief is that God had a hand
in the development of medicine.
Our health is a blessing and we
should treasure each day we have
on earth.
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Omnibus Hearing Update

2009-02-25T14:22:00.000-08:00

I know many of you have been wondering what is happening with the Omnibus Autism Hearing and if they have made any rulings. They don't like to make things public and so we have basically had to look online to get current information. They only send information pertinent to our case by mail and the last thing we got was a notification that if we want to proceed with our case we need to let them know.

Recently, my husband received an email from a friend about the latest ruling. Evidently they ruled against the first theory of causation saying that there wasn't enough evidence. The first theory had to do with the MMR vaccine causing autism. This is the article my husband forwarded to me:

Officials say 'bad science' links vaccines, autism
Friday, February 13, 2009 4:40 AM EST
The Associated Press
By KEVIN FREKING and LAURAN NEERGAARD Associated Press Writers

WASHINGTON (AP) — Bitter feuding over a possible link between vaccines and autism won't go away despite a strong rejection of that theory by a special federal court.

Thousands of families were hoping to win compensation and vindication through three test cases presented to the court. They contended that a combination of the measles-mumps-rubella vaccine plus other shots triggered autism.

Officials with the U.S. Court of Claims said they sympathized with the families, but there was little if any evidence to support claims of a vaccine-autism link.

The evidence "is weak, contradictory and unpersuasive," concluded Special Master Denise Vowell. "Sadly, the petitioners in this litigation have been the victims of bad science conducted to support litigation rather than to advance medical and scientific understanding" of autism.

Attorneys for the families said an appeal is a distinct possibility. They also noted that the court still must rule on another theory that vaccines once carrying a mercury-containing preservative are to blame.

The head of a consumer group that questions vaccine safety said she still felt there were the possibility of a link.

"I think it is a mistake to conclude that because these few test cases were denied compensation, that it's been decided vaccines don't play any role in regressive autism," said Barbara Loe Fisher, president of the National Vaccine Information Center.

Science years ago concluded there's no connection, but Thursday's rulings in a trio of cases still have far-reaching implications. The move offers reassurance to parents scared about vaccinating their babies because of a small but vocal anti-vaccine movement. Some vaccine-preventable diseases, including measles, are on the rise, and last fall a Minnesota baby who hadn't been vaccinated against meningitis died of that disease.

"We need ongoing research into the causes of autism but cannot let unfounded myths keep us from giving our children the proven protection they need against infectious diseases," said Dr. Joseph Heyman, chairman of the American Medical Association.

More than 5,500 claims have been filed by families seeking compensation through the government's Vaccine Injury Compensation Program. Thursday's rulings dealt with the first three test cases to settle which if any claims had merit — and unlike in civil court, the U.S. Court of Claims doesn't require the families to prove the inoculations definitely played a role, just that they probably did.

"I must decide this case not on sentiment but by analyzing the evidence," said Special Master George Hastings Jr., writing specifically about Michelle Cedillo of Yuma, Ariz., who is disabled with autism, inflammatory bowel disease and other disorders that her parents blame on a measles vaccine given at 15 months.

"Unfortunately, the Cedillos have been misled by physicians who are guilty, in my view, of gross medical misjudgment," Hastings concluded.

Lawyers for the families said they were disappointed.

"There was certainly no scientific proof that vaccines caused autism, but that's not the standard; the standard is likelihood," said Kevin Conway of Boston, who represented the Cedillos. "We thought our evidence was solid."

Autism is best known for impairing a child's ability to communicate and interact. Recent data suggest a tenfold increase in autism rates over the past decade, although it's unclear how much of the surge reflects better diagnosis.
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Okay... first of all, how can they say that the rest of the 5,000+ families are going to have the same evidence as these three "test cases"? That is ridiculous! What about the Poling Family? They had a ruling in their favor. What if they were one of the 5,000+ families? Would it be fair for them not to be heard? It makes absolutely no sense whatsoever for them to group all the cases into one big lump. It would be the same as saying, "Oh...let's look at three test cases out of 5,500 for reactions to this new drug." I can't believe my eyes. I really can't.

The other factor that I cannot overlook is the fact that in the U.S. Court of Claims, people don't have to prove that the vaccines absolutely caused autism, but that they "probably" did. I don't have to imagine how these families feel because I am one of those families and I feel like I got hit by a huge semi-truck. Our theory of causation has not been ruled on yet, but I can only imagine how it will go. You can't deny all these cases. If you have a perfectly normal, healthy, and vivacious child and you introduce something into their bloodstream and all of a sudden they start to have seizures, lose their ability to communicate, and in some cases go into a "zombie-like" state... then you can't tell me that there is not a correlation of some sort. The best evidence to me is the recovery of some of these individuals. I wish they would focus on that. My child has recovered almost fully and my doctor tried to deny it. If my child was born with something then I would accept it, deal with it, and move on. However, she was born a healthy and normal child.

The last point I want to make is that I am not sure if there will EVER be 100% proof that vaccines cause neurological problems in some kids because there are too many factors involved in the process of proving your case AND too much money available to disprove the theory. Vaccines are a billion dollar industry and encompasses the entire world, not just the United States. I am not sure what the answer is at this point. The numbers of children with neurological problems and developmental delays are rising faster than we can keep up with. If we don't figure out what is happening to our kids then we will end up with future adults who have social deficiencies, lack self-control, are underachievers, can't cope with change, and who have to depend on all of US to support them.
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Parents just want to know that the vaccine
manufacturers are listening.... and more
importantly, that they care.
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Reading Opens New Worlds

2009-02-23T07:24:00.000-08:00

It's amazing seeing your child progress and learn to read. I remember very vividly when my #2 read his first sign from inside the car. We were driving home from church and he looked out his window and pointed and said, "Mom.... what is Hooters?" I totally freaked out!!! First, I was shocked that he could read... then I was horrified at what he might be able to read next.

Every child learns to read in his/her own way. There are things you can do to encourage the "love of reading" but it's ultimately up to them. My oldest is a bookworm and LOVES to read. He reads about a book a day and sometimes he can't wait to finish one before he starts another and so I often find him reading multiple books at one time. I was like that at his age. It's exciting to see him grow and to see his books mature. He loves reading historical fictions about war. (He got that from his dad.) He also loves Harry Potter and other books of that type. I tried reading those and never could get into them. I know... I am definitely in the minority.

My #2 was special in the sense that I actually taught him to read. I had taken him out of public school and decided to home school. I noticed he already had the foundation for reading, but I was the one that helped him put it all together. It was so much fun watching his excitement as he learned to put sounds and words together. His first sentence he wanted to write was "I love mom." That was priceless.

My #3 is in kindergarten and loves to read. She started the year by knowing a few sight words and knowing the sounds of some of the consonants. Now she is learning blends and is able to sound out words that she doesn't know. It has been fun reading books with her because they are all about princesses, or puppies, kittens, anything pink. If the book is pink she is going to read it! Recently, my father-in-law was here visiting and he got the scriptures out and asked Sarah to sit beside him and read some passages. I was shocked when I saw her reading from the scriptures! When she got to a word she didn't know, she asked him and he told her. The next time she saw the word, she remembered it!! Amazing! I had heard of a literacy program that uses the scriptures and thought it was a neat idea. Now I see why it works. I think that where there is a will, you will be blessed. If any of you have problems with literacy you should consider using the scriptures.

My baby is so cute! He is only three and so doesn't read yet. However, he does recognize some letters and loves to count. That is definitely a start. I recently purchased some DVDs that I wanted to share with you because I have seen a difference!!! They are called: "Let's Talk! with Puppy Dog" and I got the ABC's and All About Animals. I wish I would have known about them before now. They are designed for ages infant to 4 years! I have had them for only about 2 months now and he already knows more vocabulary, knows more letters and sounds, AND the best part is that it encourages talking! The DVD will ask questions and he will respond. It's really neat. They say that speech and reading usually correspond and I can see that.

Make sure that you read to your child no matter how old they are. Even if your baby can't talk or respond in words they are absorbing all the information and wiring their brain in ways we will never know. I read to my children at least once a day and perhaps that is why they love reading so much. I don't have as much time to read as I used to for my own pleasure... so I have to take what I can, right? For me it's more than just actually reading... it's a bonding time I have with my kids. I can be silly, funny, and even scary at times. It's fun making up stories and sometimes I do that. My oldest loves it when I take a totally serious book and change the words to make it funny. Since I can't clone myself I have to divide my time among them and usually it's not even. The younger ones demand more time. At least at night they get my undivided attention and it's another way to show them how much they are loved.
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Open your mind to endless
possibilities by reading a book.
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Speech Evaluation Update

2009-02-19T17:47:00.000-08:00

I took my #4 to get evaluated at the Speech and Hearing Clinic at a local university today. I was so excited to see his teacher and the director of his preschool there. They had some really good input and insight into his progress and things they have observed. I think because of them, he got a very thorough evaluation. You know... I keep saying this, but I feel like I am surrounded by angels. I kind of questioned my timing and worried that perhaps I had waited too long to get him evaluated, but today proved to me that I did the right thing.

The appointment was at 8:30 am and so my morning was pretty hectic trying to get all the kids ready for school and then hurrying to the clinic to make it to my appointment on time. I was told to be there a few minutes early and so that made it even more challenging since my other three kids have to be at school by 8:00 am. I had to time things just right. My sweet husband and I worked together and he took the other three to school while I went to the appointment. I arrived early and was able to relax while we waited for them to call us in. As soon as the teacher and director arrived we were called in for the meeting. The lady in charge remembered me from my previous visits and she was very warm and accommodating. We had a lot of paperwork to sign and a few things to discuss. Afterward, everyone was excused and my #4 and I stayed for the testing. I was so excited to be present for the testing because I wanted to see first-hand how they did it and how my child did.

The testing was very interesting. Since many of you may never get the opportunity, I thought I would give you some of the highlights. She used a box of toys to do some of the testing. For example, she had a teddy bear and she asked my child to feed the bear and handed him a bowl with a spoon. He did very well. She told him that the bear was thirsty and waited. He kind of looked at her and then took the cup and pretended to give the bear some water. That part of the testing was fun for my child. I have to admit that it was fun for me as well to watch him do so well. He sat there and participated like a little man. I was so proud.

The next part of the testing consisted of having to look at pictures and scenes. She had a flip chart-type book with pictures and she asked different questions about the pictures. For example, there was a page with a bunch of teddy bears and she asked him to point to the red bear, the green bear, etc... There was another page where there were pictures of kids doing different things and she asked him to point to the kid who got hurt, for example. He did very well responding to her questions. However, when she asked questions about gender he did not do very well. He also had difficulty going from one task to another without getting distracted. (I thought that was normal for his age, but they seemed to think it wasn't.)

The last part of the testing consisted of auditory questioning. In other words, my child would have to listen to what was said in order to answer the question correctly. He did not do well on this part of the exam. He would only hear the last part of the question or else would repeat what she said. That is when I noticed a bit of deficiency. I was pleased at his articulation. For the most part, he was understood.

The results were mostly positive. The evaluator said that she saw not problems with articulation. She understood him perfectly. However, she did see deficiencies in language and when she totalled the results he got a score of 62 with average being 100. That basically qualified him for services through the Public School system. They will have a lady come once a week to his preschool and work with him for thirty minutes. That is basically what they did with my daughter and it worked for her. I am confident that since he is definitely more advanced than she was that he will do very well. His paperwork will show that he is "Language Delayed" and they will do further testing in about a year just to make sure that his therapy is working.

I know that if I would have done his testing earlier then he would not have qualified because the cut-off for qualifying is about 70 or 72 on the 100 scale and it would have been more difficult for me to get services. It also helped me to have the director and teacher who have known him for years there. They had a lot of input and answered questions that I could not answer. For example, they wanted to know if he could sit and listen during instruction or "circle time" and they were able to explain that he could. That was something I had not been able to observe. One of the questions that was asked was actually one of the more critical ones... the evaluator asked, "What would help YOU the most?" The teacher answered, "If he could answer my questions and let me know what he wants that would be great." That is going to be our ultimate goal.

Speech Therapy services cost a lot of money and many parents cannot afford it. That is why every parent needs to find out what services are available to them through their Public School System or even their state. Every state is different and every school system differs. However, the key is to get your child tested as soon as you see a delay. You don't want to wait until the child begins school. By then it might be too late. Early intervention is key. These people are trained professionals and they can help your child reach his potential. Don't let it be discouraging. Although it's less than ideal to have a child with a language delay, it doesn't mean that he's not smart or that he won't have a wonderful future ahead of him. As a matter of fact, I know that because of the extra help I will be receiving, my child will excel and possibly surpass all of my expectations. What helped me decide to get my child tested was the Milestone Questionnaire that the school offered the parents. It wasn't until his 36 month checklist that I began to see some delays. If you don't have access to that, there are many resources online. Many pediatricians also offer help with that as well. You don't have to do it alone.
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The only dumb questions are those
not asked.
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Talking About the "Birds and the Bees"

2009-02-18T12:06:00.000-08:00

Well.....For many parents this is a dreaded conversation and for others it's just another fact of life. I am not exactly sure where the term "Birds and Bees" came from because they have absolutely nothing to do with sex. As a matter of fact, it never came up when my parents discussed it with me. All I have to say is thank goodness for good books.

My children are at the curiosity phase. They are curious about many things, including how things work. Anyways, I had some suggestions for those of you who are struggling with this important topic and how to approach it with different aged children. I have a wide range of ages in my home and so I can definitely offer some advice for the toddler through pre-teen aged. Also, for those of you who may have children with autism (that can get kind of tricky), I have some suggestions.

Let's begin with toddler age. My case is unique in that my toddler doesn't speak a whole lot. He does point and say, "what is that mom?" when he sees me get out of the shower and I am getting dressed. That is pretty much the extent of HIS curiosity. I just tell him what the part is called and that seems to work. The main thing you can teach a toddler is the names of the body parts (whatever you decide to call them) and the difference between boys and girls.

My five year-old is a girl and she has LOTS of questions about babies and "mother's milk" and things like that. I explain it in terms she can understand and tell her that when she gets older her body will look like mine. She knows that her body parts have a purpose and that she looks different than her brothers. She's not very curious about male anatomy since she sees me change her little brother's diaper all the time and I have already answered hundreds of questions regarding why he has a "pee pee" and she doesn't. That was definitely a learning experience for her.

My eight year-old is kind of tricky. He is extremely bright and very curious. He asks me questions about babies and how they are born. When I was pregnant with my #4 he was concerned about how the baby was going to come out. He asked me if my belly was going to pop and if the baby was going to come out my belly-button. I had to explain to him that mommies have a special hole where the baby comes out. He asked me if it was my butt and I explained that it was NOT my butt. I told him that it was a special hole where babies come out and he was satisfied with that. He didn't ask me again. I think sometimes parents freak out because they think that some questions might lead to other questions that they aren't ready to answer. However, it has been my experience that if you just answer the question as simply as you can then it usually satisfies them. If not, then they are ready for more... even if YOU aren't.

My twelve year-old is funny because he is very scientific minded. I remember a few years ago he told me that a baby forms when a sperm fertilizes an egg. I asked him where he had heard that and he said, "You know mom.... when we watched that show on television." I had forgotten that we watched a program on Discovery Channel about the development of a fetus in the womb. I did not realize that he actually paid attention to that. I think the biggest advice I can offer parents is that the sex talk should not be a "one time deal" but rather a life-long lesson. We have had numerous discussions about the topic and I have answered the questions age-appropriately. I think the worst thing you can do is wait until a child is 10 years old, for example, to tell them about sex. If you keep lines of communication open then they are more likely to go to you when they have questions. Last year we had to teach him about what "gay" meant. That was difficult for me because I wanted to remain as neutral about it as possible, but I also wanted to teach him that the lifestyle was wrong. I know he will encounter gay individuals when he gets older and I don't want him to be judgmental. I had to work with numerous gay individuals in my field and I am sure it will be the same for him. We stressed the fact that marriage is intended to be between a man and a woman. It came rather natural to him to stress the fact that it would be gross for two men, for example, to kiss. We agreed and left it at that.

Children with autism don't typically mature at the same rate as their "normal" peers. My eight year-old sometimes will kiss other boys and he doesn't mean anything by it. However, he DOES like girls and that is evident. He has a crush on his teacher at church and he asked me if he could marry her. I had to explain that when he gets older he can marry anyone he wants. He was really excited about that. He has asked me a couple times if he could marry me and I told him that I already was married to his dad, and his dad added that he needed to find someone like me to marry. I thought that was so sweet. The big thing is to remember that it's important to teach what is appropriate and what isn't. You need to do this starting at a very early age and not wait. That is the key. We teach about personal space, appropriate language, and now about kissing others on a daily basis. Some people are nice and understanding, but others are not as understanding. That's the hard part.

I hope this has helped some of you realize that it's not something to dread. I actually enjoy the talks about the "birds and the bees" and I feel it's my duty to teach them. I always try to add some doctrine and stress the fact that it's important to wait until marriage before having that kind of contact with the opposite sex. We have told the kids that kissing is okay but not until you are at least sixteen and have dated for some time. My oldest came home from a Wednesday church meeting the other day with handouts talking about dating and proper etiquette. He's only twelve but he's already establishing the foundation for future relationships. That was a wonderful opportunity for me to sit down and ask him about what he had learned. I know that things will only get more complicated as he gets older, but for now I really enjoy the discussions about the future. I often tell my children that my biggest wish for them is for them to find someone like I found... their best friend who they can spend all time and eternity with. That is every parent's wish.
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Don't delay....start today.
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My Teachers..... My Heroes!

2009-02-11T15:48:00.000-08:00

Today I had the pleasure of experiencing what it was like to be a teacher at the special school my oldest two attend. Let me tell you.... it was definitely eye-opening and very humbling, to say the least. I was only there for less than two hours and it seemed like an entire day. I was so tired when I left. It wasn't a physical fatigue but rather an emotional or psychological one.

This week was Teacher Appreciation Week and every day the teachers were surprised with different things such as fruit, flowers, and candy. However, today was the highlight of their week. As a surprise, the school rented a limo for them to ride to Olive Garden for lunch. They left the school at 11:30 and were to return by 2:00pm. You should have seen the look on their faces when they were escorted out of their classrooms, one by one, to the front of the school onto a red carpet leading to the limo. I heard one teacher yell out, "NO..WAY! NO...WAY!" when she saw what was happening. It was truly priceless! I got a sneak inside the limo and it was so nice! I was so excited for them and I could see the excitement on their faces as well.

These teachers work so hard and dedicate so much of their time towards educating these special kids. They are with these kids at school from 8:00am until past 3:00pm five days a week. I don't know how they do it. The class that I watched was the eleven and twelve year-olds. They were all very sweet, but a few had issues. One child could not stand the noise and had to leave and "walk the halls" and another child asked for a "stress ball" to help relieve some of the tension he had. It was neat to see how they understood and were able to deal with their issues. However, I can only imagine what it must be like during instructional time. I was only there to basically "babysit" and so it was definitely a lot different.

I used this chance to observe the class and see them interact with one another. My son was in that class and so I took the opportunity to observe him as well. I could tell that the kids liked my son. They kept bragging about how smart he was and how he was now in the "Algebra book". I didn't know that they had tested him and he made a 100% on his pretest for "Pre-Algebra", and so they moved him up to the next book. I could tell he was so proud. I was so proud of him too. The biggest difference I have noticed in my son this year is his self-confidence. He sure needed the boost after last year! In my opinion, that alone is worth the tuition I pay.

Many of the kids in this school are diagnosed in the autism spectrum. I could definitely see the OCD come out in some of the kids. That is a common problem with autism. They knew their normal schedule and routine and it was hard explaining to some that it was different today. Before the teacher left, she gave me specific instructions on who was allowed to do what and the times for lunch, etc... That was very helpful because the kids tried to get me to let them eat lunch an hour earlier than they were supposed to. One thing I like about the school is that they allow them to have snack in the mid-morning and that is so good for them. Not only does it give them a chance to relax and rest their minds a bit, it also helps with sugar levels. I just know how grumpy I get when I am the least bit hungry.

I am so glad I had this opportunity. I was so excited to be a part of the celebration and see the faces of the sweet teachers who were truly surprised. I also enjoyed getting to know the children that my oldest spends the day with at school. I could tell that they are very supportive of one another. It shows in the excitement of seeing one of their peers progress in math, for example. That was very sweet to see. I am not sure what I would do without this school. I wish that everyone had the pleasure of having such a gem in their town.

This experience has taught me so much. I have a greater appreciation for what these teachers do on a daily basis. I also realize how much patience it takes to do what they do. The children are wonderful and I am sure it has to be rewarding most of the time, but I can't imagine not getting a break. I bet they look forward to those holidays and off days. Next time you get the opportunity, let those special teachers you have the privilege of meeting know how much they are appreciated. They have one of the most important jobs in the world, but rarely get the credit they deserve. I am just thankful for wonderful teachers!
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Give a man a fish and you feed
him for a day.
Teach a man to fish and you feed
him for a lifetime. -Chinese Proverb
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Public vs. Private School

2009-02-07T09:55:00.000-08:00

This is a continuation of my last post. Since I've had experience with numerous private schools and public schools I wanted to share some of what I learned. I also thought this could be a good "guide" of sorts for those trying to decide between public versus private school. (Disclaimer: I live in "the South" and so things might be a little different down here.)

The first thing to consider is that EVERY CHILD IS DIFFERENT. You might have a horrible experience with one child in a school and then breeze through a year with the next. A good example is my #2 and my daughter. At our elementary school my son had a horrible experience in kindergarten and we ended up pulling him out and homeschooling. However, with my daughter she has had the best year. She is doing great academically and socially. Her teacher is truly a dream come true. The parents are involved and help out tremendously. I feel like I got a private school education for free.

Are private schools better than public? I have been asked this numerous times since my children have attended both. It all depends. Private schools are privately funded.... which means they don't receive the same help public schools do. Therefore, many private schools don't offer things like sports, clubs, scholarship programs, enrichment classes such as Foreign Language,Gifted enrichment programs, and many other things. My son went to a private school in first grade and I was so excited to find out that they offered Spanish. Well... that was short-lived because almost halfway through the year they had to drop the program because the one teacher they had quit, and they couldn't afford to pay another teacher. They also struggled trying to get the books they neededed for the library. That was a shocker for me. Another factor to consider is that many private schools don't have cafeterias. Instead they have catered food from fast-food restaurants and so you either end up paying a lot for lunches or else you have to send it with your child. That leads me to the next point. Private schools cost money! Some of them are extremely expensive and that's just the tuition. You also have fees, uniforms, etc.... On the other side of the coin, it has been my experience that teachers at private schools are generally paid less and so you know they WANT to be there. Usually the classes are smaller and so you get more one-on-one attention for your child. If there is a child who is a "problem" then the school can easily get rid of him/her versus a public school where they have to jump through hoops to get rid of problem children. Private schools typically are maintained and the environment is more conducive to learning. Lastly, if you are not happy with something it's easier to get things resolved. You don't have to worry about a corrupt bureaucracy. They want to keep people there and so they are more likely to listen to a parent's concerns.

Is the curriculum better at a private school versus public? Not always. Again, it all depends on the school. We have a friend whose child went to the most prestigious private school in our area and then decided to transfer to a Magnet High School her second year and she struggled. She had to have tutors and barely passed some of her classes. She was surprised to find out how far behind she was. There are so many factors to consider. First, the amount of students in the class makes a huge difference. Public schools tend to have more students and that has to be harder on the teachers. Private schools don't have to accept EVERY student and they can limit the class size. That is a big plus. Secondly, public schools have to integrate learning disabled children in their classes, whereas private schools do not. This makes it a little easier for teachers since they don't have to worry about teaching children in such a broad spectrum. Lastly, since the class sizes are smaller in the private school setting, the teacher might be able to spot problems earlier on and be able to offer help when needed. It is less likely for a child to fall through the cracks.

The biggest mistake a parent can make when trying to choose the right school for their child is not to check the school out in person and relying ONLY on another parent's opinion. Since every child is different, it only makes sense that every experience will be different. The best time to visit a school is between 10:00am and 12:00noon. You are more likely to find staff that is available to answer questions and you will be able to observe the classes during instruction. The mornings are usually chaotic since the kids are arriving and they haven't settled into their classes. I personally like to visit at least twice before forming an opinion. Some suggestions: observe the teachers and their tone, observe the children and the class size, ask specific questions about their curriculum, don't assume that you will see or "feel" anything wrong, and lastly, speak to other parents whose children attend the school. I remember that when I was checking out Magnet schools for my oldest, one of my friends suggested I accompany her while she went to have lunch with her daughter who attended a particular Magnet school I was considering. The kids were well-behaved and the environment was clean. However, when I walked into the lunchroom and saw all the rules on the walls and how they weren't even allowed to talk during lunch...that helped me make the decision that this particular school was not right for my child.

Choosing the right school for your child is probably one of the hardest decisions you will have to make. For some, there is no choice. I have friends who can't afford private school and they make it work. The one thing you have to remember is that school is what you make it. No matter where you child goes to school, if you are an involved parent and support the teacher then your child is going to excel. When my child went to public school and I realized he was not being challenged I gave him extra work at home. They were fun workbooks and he enjoyed it. That was my way of ensuring that he maintained his love for learning. I have continued to do that with all my children. Another suggestion I have is not to get hung up on academics alone. It's important for a child to be a well-rounded individual. They need play time and social interactions. You need to help provide those opportunities for you children. Lastly, ask yourself if you truly know your child? Do you know what his/her strengths and weaknesses are? That will be crucial when helping your child choose classes, extra-curricular activities, and eventually a career path. I know that ultimately it's the child's decision, but I believe that it's our job to help steer them in the right path.
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We are shut up in schools and college
recitation rooms for ten or fifteen
years, and come out at last with a
bellyful of words and do not know
a thing.
Ralph Waldo Emerson (1803-82)
U.S. essayist and poet.
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What's Happening to Our Middle Schools?

2009-02-05T11:37:00.000-08:00

I was prompted once again to post my thoughts about a particular topic. This time I want to talk about Middle Schools and the problems my friends and I have encountered. It doesn't matter if you have a child who is different or one who fits the "mold"...it seems bullying is an issue. It's not a district problem... I believe it's a nation-wide problem and something needs to be done.

When I went to Middle School it was a bit challenging because you are starting to learn who you are and figuring out where your place is. Cliques begin to form and groups are organized. It seems that if you don't find a place soon then you end up alone. That was pretty much the worst of it.. and I agree that in itself is challenging enough. NOW...on top of those things, kids have to worry about drugs, violence, weapons such as guns, extreme bullying (Internet and at school), profanity, sex, and much more. It's almost like a rite of passage and that's the way it's treated at the faculty level. The administration does not take things as seriously as they should. Instead they go overboard when a child brings their cellphones or ipods to school. There needs to be a good middle ground.

My oldest attended a magnet school for middle school. For those of you who are not familiar with what that means, it is basically a school that offers advanced curriculum in certain subjects. They have academic magnets as well as ones for the arts. My son loves math and science so we chose the one that we felt was best suited for him. We initially felt lucky to be accepted because they did not have very many spots open. They receive hundreds of applications and only a handful are chosen. Little did we know that we would have the worst year we have ever experienced.

My son had to endure bullying, pushing, and teasing. After just a couple months I noticed he was not as happy. Then something happened... he made a friend. They were like two peas in a pod. I was so happy for him. However, this was short-lived when one day he came home and said that something was really bothering him and he didn't know what to do. He explained that every day he had to look at this sign outside the courtyard where the basketball hoops were for P.E. and it had lots of profanity written all over it. He also told me that there was profanity on the back of the bathroom stalls as well. The thing that bothered him the most was that he had told teachers and even the vice-principal, but nothing was done about it. I almost couldn't believe it. I believed the profanity was there, but I couldn't believe that the faculty could ignore such a thing. I went to the school and spoke to the vice-principal, but she didn't take it seriously. She told me that there was nothing she could do about the sign because it wasn't school property and then proceeded to tell me that if they painted the bathroom stalls, the profanity would just return. I suggested they paint the back of the stalls in black and then took it upon myself to take care of the sign. That very same day I walked over to the community center and told the manager there. Within seconds, she had a maintenance guy clean it up. That was when I realized that I was dealing with something that went beyond the normal.

My son also confided in me that he was being bullied at P.E. Since he was about two years younger than the kids, he did not like to dress-out in front of the much older children. I found out later that he was also having to change in front of boys who were seventh graders and he was only in sixth grade! That meant that the boys were actually three years older than him!! That bothered me a lot. The other thing that was happening was they were also physically bothering him. He told me of an incident where they bumped into him while he was trying to urinate and they almost made him pee on himself. He told the coach and he didn't believe him. He was so worried that these group of boys would hurt him. The incidents were getting more and more violent. The last incident was when a boy hit his head with a glass bottle. Unfortunately, my son retaliated and therefore got suspended from school. However, I was so proud of him for standing up for himself. I think anyone would have fought back under those circumstances. I was even more proud of him for keeping his grades up in spite of all the zeros he received from being absent for two days!

Standards and morals have reached a point that I can't even understand. I am not sure if it's the television and media influence, or if parents are just not doing their job... or a combination of both? The truth is that there is no respect for property, teachers, or peers in a middle school setting. For those of you who have small children, be prepared. I had heard about how bad it was, but it's not until you live it that you realize how bad it truly is. The sad part is that most of the kids who are bullied are the ones who come from loving and stable homes. The bullies prey on these children. When I realized that it was happening to my son, I quickly went online to see what I could do to help him. I found an invaluable source of information and support. These are just a couple of sites I recently found:
http://www.education.com/topic/school-bullying-teasing/?cid=55000.0067843004&s_kwcid=middle%20school%20bullying|2750575915&gclid=CIKczqCQx5gCFQRkswodI08D1A
http://www.loveourchildrenusa.org/bullylaws.php

I found out that Alabama was among the states WITHOUT an anti-bullying law. I thought that was insane. There is really not much a parent can do legally to fight bullying. However, I did find out that although there are no anti-bullying laws, there are things you can do. The first thing I did was call the superintendent's office and told them about what was going on. I wrote a letter so there would be documentation. It was amazing how fast they took things seriously once I had someone come to the school from the superintendent's office. I also requested that my son see the guidance counselor once a week and report to her. I wanted my son to know that he had someone on his side. The last thing I did was since his P.E. class was the last period of the day, I would periodically check him out early from school. I did this especially the last few weeks of school because I knew that the boys would be more wired during that time and the teachers would be less likely to notice or do anything about it. We finished out the school year. Needless to say, we did not return the following year.

There are a few questions you need to ask yourself if you suspect bullying:
1) Have you noticed any changes in behavior and/or mood?
2) Have you noticed any changes in grades or conduct at school?
3) Does he have any unexplained bruises or cuts?
4) Is he/she suddenly wetting the bed?

If you say "yes" to any of these questions then it's worth checking it out. Have a good conversation with your child. Being bullied is not just a physical thing. It affects a child's self-esteem, thought process, being able to concentrate, and can cause depression in some children. It's important to let your child know that you love him and that it's okay to come to you when something occurs. You might want to give him some ammunition such as possible come-backs and strategies to defuse the situation. Role-playing helped my son gain the confidence he needed to use these tools. We also purchased a really good book and had him read it. There are numerous resources out there. I advice you to do your research.

The last advice I could give someone dealing with bullying is try to fight the urge to pull your child out immediately. That might not be the best solution. You don't want your child to think it's his fault or that you don't have faith in him to handle the situation. Of course, it's up to you as a parent to make that determination. Every situation is different and sometimes taking the child out immediately is what needs to happen. I knew someone at the same school who pulled their daughter out immediately after she was punched in the stomach by another kid between classes at the lockers. They didn't want their daughter exposed any more to that type of abuse and definitely thought it wasn't the right environment for her. They ended up placing her in a private school.

The big issue in the area I live at is that most parents end up giving up. Some parents just choose to put their child in a private school and don't want to even hassle with the public school setting. I can't say I blame them. There are some wonderful private schools in the area and if you can afford it... why not? However, I am in the mindset that my tax dollars pay for these public schools and I am determined to make it work. I refuse to pay for private school when I have a perfectly fine elementary school across the street from my subdivision. I think a school is what you make of it. I am very involved and try to help the teachers as much as I can. It should be a team effort. I can't understand how some parents just don't care. They send their child to school and expect the school to teach them manners, respect for others, and basically babysit for the day while they are at work. That is part of the problem.

I pray that none of you reading this have to go through what I did in Middle School. I know there are many wonderful schools out there and not everyone has such an awful experience. In the end, it all begins in the home. If parents would just teach their children the basic principles of Christianity such as "love one another" and that they are "a child of God" then things would be so different. Too bad they had to take prayer out of schools. Schools could definitely use prayer right about now.
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It takes a village to raise a child.
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What a Wonderful World

2009-02-01T17:23:00.000-08:00

You know that song, "What a Wonderful World"? It's one of my favorites. When I am having one of those days, I like to play it on my piano and think of the words. It usually makes me feel better. Well... today was actually one of those days that are mentioned in the song. I was determined to have a good day and to be spiritually uplifted. I began my day with prayer and tried to keep that spirit with me throughout the day. I think that when you begin the day right, even if there are a few bumps along the way, they don't seem as significant. This post is meant to open your eyes to some of Heavenly Father's beautiful blessings that often go unnoticed.

Sunday mornings are usually pretty hectic in our household of four kids. My husband has church duties that require him to go to church much earlier than we do, and so I am left alone to get everyone ready. Today was different. I asked my children to get ready and they did. There was no fuss about what they were to wear and no mention of lost shoes and/or socks. The only one I had to help get dressed was my three-year old. I helped my daughter brush her hair. For breakfast, I made scrambled eggs and toast. They all ate without any problems. All four of my children sat at the breakfast table and ate their breakfast quietly while I went to my room and got ready. It was nice being able to get dressed and put on my make-up without any little ones at my feet.

I asked the children to get in the car, and there was no fuss about where they were going to sit. There is usually negotiations that take place over who will sit in front. However, I reminded them that it was my #2's turn to sit in front and they were content with that. (He's the one with PDD and you can count on him to keep track of those things.) I had my oldest get my baby in the car seat while I gathered up my bag and purse. (It helped that I prepared my church bag the night before with snacks, books, and misc. items to entertain them during sacrament meeting.) We left the house in plenty of time to get to church on time.

The next obstacle was my most dreaded one.... sacrament meeting. It's an hour long and reverence is the issue. We had a few Family Home Evening lessons on reverence and I was wondering how long it would take before it took. Well... today I saw the fruits of our labors. My oldest, who is a deacon, helped pass the sacrament and also bore his testimony. I was so proud of him. My #2 asked if he could sit with his Primary teacher and he did. He was reverent the entire hour! My daughter is usually good, and she did not disappoint me. Lastly, my baby was not only reverent but sat still during most of the meeting. "Is this what heaven feels like?" I thought to myself. It was an overwhelming feeling of peace and love. I just wanted to wrap my arms around all of my kids and never let go of this moment.

Primary was a challenge for me because I had no voice due to laryngitis and so I had to come up with ways of doing singing time without straining or using my voice. I was blessed to have friends who helped me talk. I whispered what I wanted to say and they in turn "translated" for me. The kids looked at me like they didn't know what to think. However, they had a lot of fun and they sang like I haven't heard them sing in a long time. I am so thankful for our wonderful pianist. Without her, I am not sure if I could have pulled it off. She is truly a blessing.

After Primary we had an incident occur with one of the kids. He was horse playing with an older child and ended up getting tossed onto the ground. He hit his head not once, but TWICE! It was a freak accident, but it scared his mom to death because he actually blanked out and was unresponsive for a few seconds. They seemed like an eternity to her, I am sure. It was so neat to see how everyone handled the situation. We were blessed to have a nurse who happens to be the Primary president there. She was able to make an initial assessment and calm the situation. Within seconds, priesthood came and eventually they were able to give him a blessing. It was as if this child was surrounded by angels. I witnessed a true miracle today. In the end he was okay. He was taken to a doctor and they performed all the necessary tests. Other than a very scary moment, he was unharmed. I am sure that one day he will look back on this experience and have a stronger testimony of the blessings that come with the power of the Priesthood. What a blessing to know that your Father in Heaven has given you a father on earth to do that work.

On the ride home, I noticed that the sky was so blue today. The weather was a little cooler than I would have liked, but it wasn't chilly. We got home safely and without too much noise. Of course, the first thing the kids wanted was food. I opened up the fridge and found JUST the right amount of left-overs to feed all four of them. I used the microwave and lunch was ready in minutes. We had a good variety and so no one complained.

The day ended as peacefully as it began. We tucked the children in bed and there was no fuss. No one tried to get out of their bed and wake others up. As I sit here now they are all asleep in their own bed. I wonder if they had as good a day as I did? My husband is watching the Super Bowl, and I am doing what I love most... writing. I sure wish I had more days like this. However, I am reminded of the fact that you can't have joy without sorrow. You can't appreciate good without the bad. You have to experience pain to enjoy pleasure. This is the way it is supposed to be. I am just thankful for this beautiful day and that I was able to appreciate it.
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Ecclesiastes III (King James Version):
3:1 To every thing there is a season, and
a time to every purpose under the heaven
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Headline News: Possible Link Between Preterm Labor and Autism?

2009-01-30T20:25:00.000-08:00

I was watching our local news and evidently they have results from a study that shows a link between premature babies and autism. This is what was posted on their website:
"There's growing evidence linking pre-term birth with autism.
A new study found one in five toddlers born more than three months early showed signs of the disorder by age two.
Scientists note premature birth may not directly cause the increased risk. Instead, it's possible that whatever causes autism may also force an early delivery."

I did some research on the study and it was done on sick children who were screened for autism. If you look at the statistics I am sure you will find that the majority of children with autism were born normal and healthy... not preterm. The results are a bit misleading. I found that children who are born at least three months early will weigh no more than three pounds. I had a friend whose baby was 26 weeks and he only weighed about 1 1/2 pounds. Believe it or not, he survived! It was truly a miracle. However, most children who are born at least three months early are going to have difficulty at birth and are going to require a lot of medical intervention to survive. I just think there are too many factors involved in that study and it is flawed.

The possible link is an interesting theory. However, I have been saying this and I will continue to say this... when a child is born premature then they are more susceptible to many things. Unfortunately, they don't delay vaccines even in premature babies! They inject them with all sorts of things. I went to the AAP (American Academy of Pediatrics) website and got the actual schedule for preterm infants. Here is the website: http://aappolicy.aappublications.org/cgi/content/full/pediatrics;112/1/193
It basically states: "Medically stable PT and LBW infants should receive all routinely recommended childhood vaccines at the same chronologic age as recommended for FT infants. Under most circumstances, gestational age at birth and birth weight should not be limiting factors when deciding whether a PT or LBW infant is to be immunized on schedule. Infants with birth weight less than 2000 g, however, may require modification of the timing of hepatitis B immunoprophylaxis depending on maternal HBsAg status.
Dosing
Vaccine dosages normally given to FT infants should not be reduced or divided when given to PT and LBW infants. Although studies have shown decreased immune responses to some vaccines given to VLBW, ELBW, and very early gestational age (<29 weeks) neonates, most PT infants produce sufficient vaccine-induced immunity to prevent disease when full doses are given. The severity of vaccine-preventable diseases in PT and LBW infants precludes any delay in initiating the administration of these vaccines."

That is so interesting to me... very interesting indeed. I looked it up and 2000 g is equal to 70.5 ounces. That is equal to 4.4 pounds and that would be the cut-off at which they would delay JUST the Hepatitis vaccine. Can you imagine giving a baby THAT small a Hepatitis vaccine, a flu vaccine (which still contains mercury), Rotavirus vaccine, DTap (which is really 3 vaccines in one), Hib, Pneumococcal, AND Polio?!!! Those would be all the vaccines that would be due starting at 6 weeks to 2 months. In my opinion that is not enough time for the baby to gain enough weight and the strength in immunity to withstand all the toxins in vaccines. Also, what about the moms? I wonder how many of them received the Flu Vaccine while pregnant? I would love to find out how many babies who are born less than 4.4 pounds at birth end up with autism in comparison with those who weigh more? That could provide more proof to my theory. However, there are SO many factors involved in studying preterm infants. I know they are trying to figure out why it seems there is an increase in preterm infants. I am not sure what the statistics are, but one of my friends who has had a couple preterm infants told me that her nurse said they have seen an increase of babies born prematurely and ending up in the NICU. There has to be a cause for that, I am sure... but I am not convinced that whatever causes autism is the cause of preterm labor.

In Wikipedia it says, "In Europe and many developed countries the preterm birth rate is generally 5-9%, and in the USA it has even risen to 12-13% in the last decades." They should do a study and find out why our rates are so much higher than Europe. We obviously have great medical care in the United States... hehe...(sarcastic tone).. I found an AWESOME article in The New York Times online and I URGE you to read it!! It is entitled: "A Lesson From Europe on Healthcare" and it is not too long, but it says millions! It was written by David Leonhardt and talks about his experience with hernia surgery in the United States and what happened when he ended up in Greece and had to have medical care. He was able to compare and contrast the experiences he had and the results will shock you!! This is the link: http://www.nytimes.com/2006/10/18/business/18leonhardt.html?pagewanted=1&_r=1
My grandparents complain about the medical care they receive here versus the medical care they received in Puerto Rico. Although the wait is longer, the facilities are not as clean, and the people are not as nice sometimes... the amount of testing and the PREVENTIVE medicine they do over there is superior to here. Although Puerto Rico is part of the United States they have a lot of European influence. I think we could learn a thing or two from Europe.
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I would also like the scientific
community to do a study on the
correlation between the health of
the mother and THAT link to autism
and other neurological/behavioral
disorders.
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Alas.... It Was Too Good to Be True

2009-01-30T14:29:00.000-08:00

Something told me to call the hospital laboratory and confirm that the balance for me, my husband, and my older son were what I was told the other day. Ironically, I've had laryngitis now for about 4 days and for a couple hours I was able to talk. I decided to take advantage of that and call them since it was on my "to do list" and I wanted to make sure it was done. Little did I know I would be opening up a can of worms.

It seems to me that our ONE laboratory test has become about 16 procedures and 3 different accounts PER PERSON! That is why I keep getting different stories when I call. Luckily, I ended up with a lady who seemed to know what she was doing. In stead of looking at just one account, she pulled all of them up on her screen and was able to give me the specific numbers and balance information. Unfortunately, it looks like we still owe thousands and thousands of dollars. We are basically back at square one. Lucky me!!

We requested an itemized bill and should be getting that very soon. Once we look at that and see what our insurance has already paid and what is left then we will have a better picture of what is going on. Also, we will hopefully be able to catch any double billing. I have a strong suspicion that we were double billed.... especially since my husband and oldest son have the same name and birthday. That is a very likely error.

I still haven't lost hope. I know that things will get straightened out and that we will be able to clear all of it up. I am trying to keep in mind that there is no sense in stressing over things we cannot control, but rather doing what I can on my end and leaving the rest up to my Heavenly Father. It's in His hands now.
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The Serenity Prayer.... keep
that in mind.
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Laryngitis... An Unexpected Blessing

2009-01-28T18:14:00.000-08:00

Today started just like any ordinary day. I woke up and helped the kids get ready for school. I even made pancakes for breakfast (their favorite). Things went rather smoothly and I was excited to get the things on my "to do list" done in the four hours I had while my #4 was in school. Well... little did I know that I was going to lose the one thing I needed the most to get things done. By 10:00am my voice was completely gone!

I cleaned my house and ran a few errands, including cashing a check at the bank. That is a very funny story. I tubed the teller an envelope with the check and driver's license inside. I wrote a note on the outside of the envelope that read, "I have laryngitis so I can't talk. I just want to cash this check. Thank you." However, it backfired on me when the teller just turned the envelope over (without reading it) and proceeded to take out the check and my driver's license. I tried to motion to him in the car, but he never looked up. He then asked me, "How would you like that? Any particular way?" I shook my head no. He then tubed back my money and license in ANOTHER envelope. It wasn't until I was about to drive away that he noticed the note on the envelope and started to laugh. He apologized and then said, "I had that a few years ago and it's awful." I just nodded in agreement and smiled.

You don't realize how much you need your voice until you lose it. I went to pick up my son at preschool and the kids were in the process of playing with a huge tub full of shaving cream. I wanted to tell the teacher so badly how my son has managed to empty out TWO cans of shaving cream and make a HUGE mess in the past couple weeks at home. I then noticed that one of the BOYS was wearing pink high heels and a glittery yellow cape. He had shaving cream all over his arms and hands. It was the funniest sight. I wanted to say, "I can only imagine if his mom came through that door right now." I will have to remember to say something about that tomorrow.

When I got home I realized that I wouldn't be able to do our usual game of flashcards, and I started to think of things we could do that wouldn't involve talking. In the end, we were able to spend a nice relaxing afternoon watching our favorite shows on t.v. while I listened to him speaking. Today I had a "light bulb" moment. I realized that sometimes I just need to listen. I listened to my son as he answered Dora's questions. It was a neat thing to see. He actually understood what was going on and was interacting with the t.v. I had not noticed that in the past. When Go Diego Go came on afterwards, it was the same thing. He was able to answer ALL the questions at the end about the animal they discussed in the show. It was very reassuring.

One of my sweet friends offered to pick up my kids today and so I actually was able to take a short nap while my #4 took his. That was such a treat! Usually I don't take naps in the afternoon because I am worried about oversleeping and being late to pick up my children so I don't end up falling asleep. I was awakened by the doorbell ringing numerous times. My #2 loves ringing the doorbell. I opened the door and was greeted by three smiling faces. My oldest gave me a bear hug and asked me if I was feeling okay. I whispered in his ear that I had laryngitis and so I couldn't talk. He was so worried about me. My #2 asked me if it hurt. I told him that it didn't except when I coughed or talked. He kept asking me specific questions about why it hurts and exactly what causes laryngitis, etc... (Could we possibly have a future doctor?) Once his curiosity was satisfied, he told me that he had homework and quickly went to work. That was a first!

It was such a nice afternoon. There were times when I was tempted to yell or raise my voice, but I quickly realized that I couldn't. Instead I whispered in their ear and that's all it took. In a weird way, my laryngitis was an unexpected blessing today. I received unexpected help from a dear friend, my children were sweeter to me since they knew I wasn't feeling well, and even my husband pampered me a little more today. Lastly, I learned that sometimes a whisper can be more effective than raising your voice. That in itself made it all worth it!
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Take time to see and appreciate
the blessings in your life. If
you can, record them. In time
you will have volumes!
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The Insurance Dilemma Continues

2009-01-26T19:35:00.001-08:00

My heart goes out to anyone who has had to battle any medical insurance company. I never dreamed that I would be faced with that battle. It's unreal the lengths that these people will go to in order to not have to pay. The irony of it all is that the testing we had done that they don't want to cover had the potential of saving them millions in the long-run.

We FINALLY got myself, my husband, and my daughter's testing covered. We're almost done with my oldest as well. However, there are still two more that they refuse to pay on the basis that they deem the testing, "not medically necessary" or "does not meet criteria for coverage".... it's crazy! All of us (except for my daughter) went and had the blood work drawn on the same day and had the same test done on the blood. For some reason they just want to pick and choose who and what part of the testing will be covered. It doesn't make sense.

I have spent so many hours on the phone on hold and talking to people that my ears are ringing. I have talked to my insurance company and the hospital. I have received many versions of their story and it's never the same. Of course, the latest "story" is that my hospital has not given my insurance company enough information and then the hospital is saying that they are denying it in spite of the information. The last time I spoke with them I was told that they cannot call one another to straighten this out. That was the last straw for me! MY last words to the hospital were, "if that's the case, you leave me no other choice." I hung up and called my dear husband who (as many of you know) is a lawyer. :)

I know that with a lawyer's letterhead it will be taken more seriously. So far I have been very sweet and patient on the phone. Perhaps now they will realize that we mean business. We are going to make our demands known and if they don't do what they are supposed to do then they will be in essence not fulfilling their end of the contract. We pay on time, never late... and we haven't needed much coverage since we are all very healthy. Now that it's time for the insurance to do their part, they have the obligation to do so. It's not our fault if things are messed up with the paperwork. That is THEIR job to straighten out, not mine.

Four out of six isn't bad, huh? I am proud of myself for not giving up. I want all of you to know that there is hope with insurance companies. The main thing to remember is to call them as soon as you realize there is a problem. NEVER assume that the hospital, doctor's office, or ESPECIALLY the insurance company will take care of things. It's up to you. I know that's unfair, but it's true. Sometimes it's just a clerical error and that can be resolved fairly easily. Make sure to keep all your "Claim Reports" and especially your bills. I will let you all know when I am six for six! Hopefully that will happen very soon. Wish me luck!!
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Insurance companies know that
all you can get them for is
"breach of contract" when they
refuse to pay. Most people
do not have a lawyer to help
them. That's just wrong!!
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