I was talking to a friend today and some things came to mind. Many people want to know why I fight with the school district and the State. I have earned quite a reputation as a crazy mom. There are many people that are happy with the education that their children are getting and wonder why I am not. Well, let me explain it to you.
I have known that my son has autism since he was three years old. I lived in a very small town in Illinois with the population of 1,200. I had twin daughters that were 5 years old and were in all day kindergarten. The town was having testing for children 3-5 years of age. I thought it was to see where they were academically and what they needed to work on prior to starting kindergarten. My son was three years old and the only child that I had home during the day. I signed him up for the testing and took him up to the school. I wasn’t sure if he would go through it because he was a screamer. I don’t mean that he screamed every once in awhile. I mean that he screamed 24/7. For the first two and a half years of his life he would sleep for 30 minutes and scream for the next two hours. This went on all of the time. He didn’t speak or even make noises. He never said MaMa or DaDa. He just screamed. When you tried to hold him he would arch his back. He never reached for me and even really acknowledged me. He just screamed. I had asked the pediatrician and he said boys don’t talk as early as girls and some babies cry more than others. So, they took him into another room for awhile and when they brought him back they said that if they felt that he needed to start Early Childhood they would call me within a week. Within three days I received a phone call. They weren’t sure what his issues were, but the district felt that he "wasn't right" and put him into school. They didn't know what the problem was, but they were determined to find out and give the best that they had.
This was a town of 1,200 people. Their resources were very limited. I didn't even know that my child had an issue. I was blind. Something that would affect my judgment for the next ten years.
These wonderful people put my son into a classroom of six students and two teachers. They gave him OT and ST. They worked on his social skills. They worked on any issue that came up. Not because they had to. He didn't even have an IEP yet. They did it because they saw a child that needed help to be successful in life. They treated him like a human being that needed guidance and support. He was not another drain on their budget. They had practically no budget. It didn't matter. HE mattered.
When he was four they did some educational evaluations. This was before the internet. This was before anyone knew anything about autism. They said that his tests came back with some very odd results. They said that he was way at one end of the curve on some things and at the other end of the curve on other things. There was nothing in the middle. They said that he didn’t make eye contact. I had never noticed this. They said that he didn’t play with other children. That he would only parallel play. They said that he used dramatic and constructive play, but not interactive play. He could name colors, count up to 12, and recognized numbers. He could sequence objects by size and understood concept of big. He needed a routine and things had to always be the same and if it was not it would throw him off. He would flap his arms and rock when he became excited. He couldn’t follow simple instructions. He displayed a short attention span. He was very interested in Thomas the Tank Engine and could name every engine, their color, and their number. He could tell the name of a Disney VHS tape just by the font. You could lay out the movies, without the box, and he could name the movie just because of the font. I never even noticed that each movie had a different font. They took all of this information and started reading. They found that he exhibited many language, behavior, and socialization characteristics that may indicate a pervasive developmental disorder. They included: late talking, limited variety of responses, non-use of greetings, lack of conversation, lack of playing with others, limited eye contact, perseverative language, echolalic language, arm flapping, strange attachment to objects, and an ability to repeat video scripts verbatim.
When my son was five we moved back to Kansas City. This is where my husband and I were raised. We carefully called and interviewed every school district on both sides of the state line. We wanted to make sure that Jake would get the best that Kansas City had to offer.
After several phone calls and interviews we chose Lee's Summit. I went and told the personnel here that the district in Illinois felt that Jake wasn't ready for regular kindergarten. They felt that he needed 1 on 1 or small group instruction for at least one more year. It stated it in his IEP. Lee's Summit assured me that they were a big district that could handle all of his needs and issues and that the best thing for Jake was going to kindergarten. Once again, I was blind.
Jake went to Prairie View from kindergarten through sixth grade. He had some amazing teachers there. They were kind, supportive, and made accommodations that his IEP didn't call for. We had no issues there. I truly felt that we had picked the best school district that we could have. I volunteered in his classroom every week for at least 2-3 hours. I helped with the school carnival. I helped with health fair. I wrote to the Kansas City Star and told them what an amazing job they were doing with my son.
I didn't know much about autism and I felt like the district was doing all that Jake needed. Little did I know that when he got into high school my only hope for him would be living in a group home. That is where we are now. On his IEP the district has decided that his transition program would be to live semi-independently.
WHY? Because the district never addressed his autism. They didn't address his dysgraphia. They didn't address his social issues. They didn't address his written language issues. Why didn't they? I didn't demand it. In seventh grade the only goal he had on his IEP was to be able to write a paragraph. This is a child with autism, dysgraphia, and a written language deficit.
I thought that you had to believe in the experts and trust them. That blindness has caused the loss of my son's independence. If I had educated myself and fought for him, he would have a different future. His future was stolen and I stood back and let it happen.
I gave the school district a five year old with potential. They have given back a child that will never leave home. I let them do this to my child. My silence and acceptance granted them permission to destroy my son's future. He could have been an independent taxpaying citizen. Now he will be a burden on tax payers. Not to worry, Lee's Summit. You have no group homes here, so he won't burden your city.
Your children still have a chance. Your children still have a future. I pray that none of you ever have to read the following and have it apply to your child. But, if you continue to sit back and do nothing, you will face the same situation that I face today. I let the State of Missouri and the Lee's Summit School District steal my son's future. I will live with that until the day that I die because Jake will be living with me until the day I die. What will happen to him after that, only God knows. I pray that you never have to go to bed at night and think about that.