On the road to Autism

Always be ready for a fight. You might not have to, but it is better to be prepared than to be caught unaware! 

As many of my blogs start, this one begins with a conversation with Mama. We were talking about the process she is going through with her Goofy child and she asked me about my journey and how Tyler ended up with what he has. So if it's something that Mama wanted to know I imagine that there are others who could find that kind of information useful. So, let me tell you about our road to autism.

First off, knowing what I know NOW...Tyler has always showed signs of autism. I just didn't know that's what it was. I didn't know much about autism back then. I thought that he was just ADHD of your above average kind. I always knew school would be a struggle. However, that being said....After my ex-husband and I split up and I had to put Tyler into daycare so I could work and then later pre-k NO ONE, not a single soul, ever said anything about having any kind of issues with him. Which I find to be an absolute impossibility.

First year of Kindergarten. That's right FIRST year. Right off the starting line the teacher began communicating with me that there was a problem. Did he go to pre-k? He did?! There is nothing about him that would have made me think he had.... Academically Tyler was fine. In fact, he was doing great. But She said that Tyler did not recognize his classmates personal space. That he was always moving. She had to have him sit in the very back at floor time so he could have all the space he needed to fidget and move while not disturbing anyone. If you said something like "Let's get ready to go to music class" he would get ready and then leave. Alone. There were many conversations throughout that year. She was trying to hint at something to me. I knew that then, but I wasn't picking up what she was saying. She did not ever say the A word. She was a wonderful teacher who worked very hard for Tyler. I just wish she had said something more at the time.

Second year of Kindergarten. The first year teacher had said Tyler would do perfectly fine moving on to first grade academically, but that she worried about his other very severe struggles leaking over to academics as he became frustrated with his struggles. So I decided to hold him back to see if he could mature enough in another year to move on without any problems. This year was a wash. This teacher was not a bad teacher she was just very quiet and did not do much talking to any of the parents outside of the parent/teacher conferences.

First grade. This is when things started to kick up. This teacher was amazing. I loved her. I talked to her every single day. Every day they would walk out and she'd say: You will NOT believe what your boy said/did today. It was one of those things where you never knew what she was going to say, but you just knew you'd believe it when she said it. She recognized that Tyler needed more. So she got him involved with an independent study thing at school. He got kicked out because he couldn't be quiet in the library and became a distraction. So she got the work for him and let him do it in class. She recommended to me that I get him into this other thing the following year that he couldn't be kicked out of. I decided against it anyways, because I just don't think those kind of classes would mesh well with how Tyler is at this time although he could handle it academically. It was in this year that someone (not school related) finally dropped the A word at me.

So I began doing my research. What is this? I cannot even begin to express the elation we went through at discovering the autism connection. Up to this point Tyler had been being very unsuccessfully treated for ADHD. I threw the A word down at one of his appointments. The Dr readily said that yes Tyler does indeed display autistic tendencies. You should tell the school, they can test him. You could have him tested yourself but this can be expensive. So I recommend you tell the school.

Second grade. They gave Tyler this teacher because she was supposedly VERY good in this area. I had problems galore with that woman. She refused to talk to me. If I asked her something she would tell me to talk to Tyler about it. Hello?!!! Have you been paying attention at all during out 504 meetings? Sent in a paper for her to fill out (an autism rating scale survey thing) so I could give it to his Dr...never got it back. Thanks for another wasted year. She may have been good with kids, but she sucked with me and personally I don't think she did that great with Tyler.

Third grade. This year was bitter sweet. At this point they decided to give the kids a primary teacher and then have them go to a secondary teacher for the last part of the day. First teacher...I liked her. She was quiet. If you talked to her, she talked to you. Second teacher? Could.Not.Stand.Her. Not only was she very loud (which caused Tyler great struggles all year including not wanting to go to school) she was just *sighs* a bitch. She was one of those people that she was the end all be all. Her way or no way. She started denying Tyler recess and didn't tell anyone. When I found out and told the principle about it she got in trouble for it :) She got yelled at in our IEP meeting. She got in trouble by the district for saying that Tyler didn't have autism. Everyone got in trouble for that, because they all said it.

At any rate. I had several wasted years. I thought throwing down the A word during our meetings was enough to get them going. Maybe with some it would be, but at my school they weren't biting. They repeatedly insisted to me that they knew what autism was and that it wasn't Tyler. I submitted a letter from a second Dr saying that he tested Tyler and that he was indeed on the spectrum. It was at this point that they agreed to have the districts team come out and test him to prove to me that he wasn't. In this regard, my advice to you is: If you have your suspicions that your child is on the spectrum and your school does not offer to test when you mention it....submit a letter tot hem formally requesting the teasting to be done. They will have to comply to that. The battle that I fought with the school over the years, as hard, frustrating, and hurtful as it was at times was worth it in the end.

Because of my fight, because of them getting yelled at for what they said about Tyler, the day they were told of Tyler's official classification with the district they walked up to a dear friend of mine and told her that maybe her son should be tested. The two of them have been in class together since the second year of Kindergarten. So the fight you face not only is for YOUR child. It paves the way for those behind you. This other boy whereas in a lot of ways is a lot like Tyler, he also isn't much like him at all. Tyler is VERY out there. This boy is more quiet. But that in itself is the point. Autism is a spectrum disorder. Knowing one person with it is...knowing one person. What works for some will not work for all. Autism manifests itself differently in different people, but with some similarities. 

Tyler's classification in the school is Autism with a secondary language impairment.