Our Struggles with Asperger’s Syndrome
When my son Taylor was about a year old, I started noticing things that didn’t seem quite “normal.” When he would have temper tantrums, he would throw himself backward with such force, it scared me that he would really hurt his head. When he was walking, he would walk on his tiptoes. These are things most kids grow out of by the time they are three, but Taylor didn’t. He still walks like that sometimes at almost twelve years old.
When he started kindergarten in 2004, his teacher came to me and said she believed he had ADHD. I took him to start seeing a psychiatrist to have him evaluated. Another thing I noticed was that his anger was explosive. He would go from being the sweetest kid alive, to a holy terror in sixty seconds. It started happening more frequently. Then I got a call one day that he was suspended from kindergarten for a few days because he choke-slammed a kid for cutting in line for the bathroom. He was diagnosed as ADHD, and I voiced my concern about him being autistic, as I had read about it and many of the signs seemed apparent to me. But the psychiatrist shot down the idea. We tried several cocktails of drugs, finally settling on Concerta and Strattera, both nonstimulants. It takes him from uncontrollable to quiet. I feel like I lose a piece of his personality with every pill he swallows. And I have agonized over the long-term effects. But I know that he needs it to help him keep it together during the long, stressful day at school.
During this time period, Andy was deployed to Iraq for the first time, so I was alone to deal with it myself. Taylor’s fits became more enraged and harder to control. I learned that there was no way to make him understand someone else’s point of view, so diffusing him was the only way to get him to calm down. Even at six, he would try to hit himself, or slam his head in to the wall. It’s very disturbing to watch your child try to seriously hurt themselves. His eyes grow dark and cold when this happens … completely disconnecting from me. During this same time period, I moved the kids and myself down to our new duty station in Georgia to wait for Andy to get home. We were there for about a week, when Taylor had a major meltdown. He kept going in to the kitchen and taking knives out of the drawer … not butter knives, but big, sharp ones. He said he wanted to kill himself. I thought he was attention seeking, trying to get his own way by shocking me. I didn’t know what to do. I had to take all the knives from the kitchen and lock them in my closet, but he still kept getting up through the night and trying to sneak in to take them. Finally, at about 5 a.m. and emotionally destroyed, I took him to the hospital ER on Fort Benning. They had a psychiatric doctor evaluate him and he recommended that we put him in an inpatient facility in town, the Bradley Center. My six-year-old was going to the loony bin. The first time he had spent a night away from me, not in the care of his grandparents. How could I protect him? Would he think I abandoned him? My head was spinning. This was my baby, and I had no one with me to help me make the right decision. Thankfully, kids are pretty resilient, and he did not cry or get upset when I took him and had to leave him there. I cried for the next week while he was there, calling every morning and evening to say goodnight and going in for the only two hours per day I was allowed to visit. The staff told me they didn’t feel he needed to be there, so after a week, Taylor came home. He was in outpatient care five days a week for a month, and had a new doctor and a new diagnosis: Asperger’s syndrome.
Finally … someone else saw the signs I had seen. Autism is a spectrum disorder. Asperger’s is at the low end. He is very highly functioning. If you met him, you would think there is something a little different about this kid, but wouldn’t be able to put your finger on it. Asperger’s kids have poor social skills, but are usually highly intelligent. They don’t read social cues well from other people. Taylor will become obsessive about certain interests. One of Taylor’s was Amelia Earhart. When he started in school a month later, I knew we were going to have problems for the rest of his life, getting him the best education possible. He is one part gifted and one part special education. The bottom line is that he doesn’t fit in the nice, neat box that most teachers prefer children fit in to. I say most, because there have been a few shining stars, but all of know that they are few and far between. The school district has to create either an IEP or Individualized Education Plan, or a 504 plan. This is an agreement between the parents and the school that outlines things like disciplinary procedures (there was quite a bit of desk flipping until we got the medicine sorted out, and a few more suspensions) and things like extra time given on a test or homework modifications. It even includes if you have a teacher’s aide working with him or counseling. Bottom line is that if you have a child with a disability … seek out someone who knows what they are talking about. Some sort of advocacy group that knows the laws, because most of the schools will fight you on it. They don’t want to have to provide anything extra or make teaching any more difficult for the teachers. I have dealt with six schools in all of our moving. I only had one that didn’t put up a fight.
So now Taylor is twelve and he rarely threatens to hurt himself. But he takes about seven pills a day. I have him take his medicine at home so that it gives him one less reason to stand out at school. He rides the bus with the high school kids and they are horrible to him. He looks normal, so no one knows he has a disability. They call him names, say he is gay and reduce him to tears on a daily basis. He’s never had a best friend. He’s never been invited to a birthday party for his classmates. My heart breaks because I can’t protect him. His school here in New York has been awful. He gets As and Bs on tests, but because of the knock-down, drag-out fights we have over homework, some of the teachers lower his grades. His psychologist agrees with me … if he can test out of the material taught, then he is learning it, so why bother deducting from his grades over the principle of doing homework, which purpose is to reinforce the materials so that you can test? The school doesn’t see it that way. When we move, I will explore homeschooling … a subject I have long been against, figuring he needs the social interaction. My father has a master’s in education, so it’s not like he would sacrifice his learning potential. Social interaction can come through any number of extracurricular activities. With bullying suicides on the rise in preteens, I think I am to the point where I can’t take the chance. I have to help him get through this rough stage of his life, until he can get to the age where he is able to find people that share things he is interested in. I know that it will happen at some point, but watching him get there is the hard part.