Monday, October 26, 2009

Medical Insurance Nightmare Update

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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Sunday, October 25, 2009

Autism Checklist and Warning Signs

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.
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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.
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Tuesday, October 20, 2009

The Stigma of Special Education

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.
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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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Monday, October 19, 2009

My Dog Doesn't Bite... But My Child Sure Does!

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!!
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Friday, October 9, 2009

Confessions of a Stressed Out Mom

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.

Monday, October 5, 2009

Autism Rate Has Increased to 1:100

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.
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The statistics are alarming. However,
what concerns me most is the way it is
being ignored.
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