Holly Robinson Peete Keeping It Real

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

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

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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ABA Therapy Available in Montgomery, Alabama

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

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?

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

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

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

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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Does My Story Sound Familiar?

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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I Can't Be The Only One

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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Karate Therapy?

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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Top Ten Ways to Maintain Your Sanity

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)

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)

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)

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)

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.
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To be continued......
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My Son's "Rudy" Moment

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.
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When you feel like giving up....
DON'T!!!
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A Great Idea to Solve the Public School Crisis

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.
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We need to pay more attention
to the Attention Deficit that
is truly plaguing the nation's
schools.
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Let's Eat!!

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!!
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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.)
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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.
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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.
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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.
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Oatmeal:
I make my oatmeal with milk and cinnamon sugar. They love it and will eat it for breakfast AND snacks.
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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!!
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"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.
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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!
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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!

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Happy Summer!!!
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