Autism Awareness

This Thursday, April 2nd, 2009 will be World Autism Awareness Day! I made a video featuring Tom in the hopes of making people more aware. I will post that on the site and it can also be found on youtube by looking up Neibauer. In talking to people here and there we are often surprised at how many misconceptions there are out there about Autism. I guess to us it has become such a part of life that it is easy to assume people know all of the ins and outs. I would like to clear up a few misconceptions that I have found are prevalent with this post.

First of all, my biggest and most important message is this, if you think something is wrong go with your gut! Looking back Tom has shown signs of Autism since birth! I spent the first couple weeks of his life wondering why he refused to breast feed and didn't seem to have much of a connection to me. I know now that the physical contact between mother and child while breastfeeding was extremely uncomfortable for him. I gave up on the breast feeding and tried to move on but it just seemed that he was different, I couldn't put my finger on it but something was not like other babies. Had I known the signs of Autism I would have brought it up to a doctor or someone. I only knew what I had seen in movies and he didn't seem to be any Rainman to me! I brushed my feelings off to being a new mother and being stressed by a lot of life changes that were taking place. We went to the well baby visits religiously and though he was lagging in some areas we were always reminded that children develop at different rates. When Tom turned 2 and the word "ball" was the extent of his vocabulary we were sent to the birth to 3 program for speech therapy. They did an evaluation and diagnosed him with Sensory Integration Disorder, they brought up then that he may very well have Autism but only time would tell. We started occupational therapy and speech therapy. Fast forward to Tom's 4th birthday, he now started to receive his speech therapy from the school district. He also went to a private preschool. I felt at this point that he had Autism and spoke to his teachers, doctor and therapist. I was told to wait and see how he developed over the next year. When Tom was 5 he started kindergarten readiness at our local public school. I was still concerned. The doctor told me to request an Autism evaluation from the school. I did. They said "wait and see how he is next year" Now I am not faulting the school. We have found many wonderful people there that have helped Tom and our family immensely. The truth is that at this point, as his mom, I should of kept looking. Later in the year I still felt uneasy and was recommended by the pediatrician to get an evaluation at the Weisman Center in Madison. I was put on a waiting list. We finally got our appointment in the fall of Tom's kindergarten year. Once he was officially diagnosed we started the paperwork to get Tom on the Autism waiver. A process that we have been working on for over a year. In the time that I was "waiting to see" I had really been doing nothing but wasting time. A child has to be on the Autism waiver waiting list by their 8th birthday. Tom is 7 now and in first grade. We will find out in the next two weeks if he has been given a spot on the list. If he gets declined we can request his case be looked over again by another team. If they again decline him we can go to Madison for a hearing. If that fails also than Tom is out of luck. There is no more time for any second chances. There is no chance of additional medical reviews and reapplication. Tom will turn 8 before any reapplication could be done. On February 14th, 2010, Tom's 8th birthday, he will either be on the list or never will be. This is why my biggest piece of advice is go with your gut. Had I kept searching when I felt something was wrong we would have had time on our side. Until you really get into this you won't know how little time there is and how long these things take.

Second, let me take a step back and explain the Autism waiver and why it is so important. Most insurance companies do not cover the cost of treatment for Autism. Unfortunately, the cost of a good treatment plan is more than almost any family can afford. In the state of Wisconsin the Autism Waiver was created to help the families cover this cost. We are very very lucky to live here. The services provided by the waiver are on a take it or leave it basis. There is no different levels of care, no matter what your case, everybody gets the same. It is 40 hours a week of in home intensive therapy. For at least 1 year but up to 3 years. You must be available for the full 40 hours every week with the exception of a vacation here and there, but even that time must be made up. The waiver focuses a lot on early intervention and that is why a child must be on the waiting list by his or her 8th birthday.

Third, kids with autism are not slow, dumb, or any other word you can come up with that means not being very smart! Some kids on the spectrum have a higher than average IQ, some average and yes, some below average, but in every group there is that mix. Tom's IQ has been tested and he falls on the low end of normal. The doctor however reminded me that for a complex kid like Tom the test hardly matters. He excels in many areas, like science but struggles with simple things like short term memory and following directions. For this reason it is hard to get a real handle on his true IQ. I will not due him the injustice of excusing things and telling myself he cannot do it because he is not smart enough. He can do and become whatever he wants.

Fourth, ask questions. Most families affected by Autism are more than willing to answer your question and share their stories. Don't feel like you are prying or being offensive by asking a question. In our case, we are happy when people are interested in understading things better.

Lastly, being a parent to a special needs child has very unique challenges. Some days are very frustrating and some days you need a good cry. Please try to understand if us parents, sometimes get frazzled and need a break. I know that taking a break now and then is the only way I can be a good parent. Please refrain from giving behavior advice unless you have dealt with a child on the spectrum. It is frustrating when we are doing the best we can and people think the problem is simply bad parenting. Most of all though as you go through your day to day life try to be kind and understanding to everyone. You just cannot be sure of what a person has going on in their lives. As strangers see me I am sure they have no idea the struggles that I have, even many people that do know me have no idea what it is like for us. Be kind.

Well this has been the longest post in history! If you have made it to the end, thanks for reading and staying with me. It means a lot! Not a day goes by that I am not thankful for our family and friends. I don't know where we would be without you!