Wednesday, September 18, 2013

The gift of Autism

My third child, Derek was 7 lbs 15 oz. He was born two weeks early. I never thought I was capable of doing anything on time, let alone early. My first two children had been predictably late, and I thought surely this one would be as well. He tried to come four weeks early but due to dumb luck and lots of intervention, I managed to hold him in the extra two weeks necessary for his lungs to fully develop and he did come out screaming all the way. He was not an easy birth, I had to deliver head and shoulder and he came out slowly, carefully but ultimately whole and healthy. A few weeks into his life, he developed an umbilical hernia, and had a tremendous amount of digestive problems. But he was a happy, smiley engaged baby and he hit his milestones more or less on time. I mention the umbilical hernia and digestive problems because it seems to plague a great deal of kids later diagnosed with autism, but back then, I never saw it coming. By the time Derek was a year old, I knew he was going to be what they would all call different. He was very definitely shy, but that was okay. There were not a lot of kids that were shyer than I was and I had managed to fling myself out of my shell eventually and do just fine. And if he did not, so what? Who wants a cookie cutter kid? Not me. In fact, I am so grateful for the shyness. It taught me to watch and listen. Great skills for a writer. If you are too afraid to talk to people, you are in a position of observation and it teaches you very much. I knew, calmly and surely he would make friends at his own pace. He seemed almost too attached to his older sister, followed her everywhere and she used her voice for him and understood him, so I was not too worried. It was nice they loved each other so much. I put him in pre-school when he was 2-3 and immediately began getting complaints about him. He wouldn't play with the other kids, he would play next to them, quietly, but he wasn't engaging. To this complaint, I always said "So what? He's not hurting anyone, bullying anyone or being disruptive, if he doesn't want to make friends, he doesn't have to." Funny, NO one ever seemed to notice I had no friends and engaged in a lot of watching when I was his age. I could not understand why they wouldn't just let him be who he was. Why was different always BAD? True, he did wander a bit out of "circle time" but you know, he was three... and I didn't worry about it too much. I knew he would grow out of that because he understood rules and wanted to follow them. But, besides me, no one really understood him or knew how to communicate with him very well. He had an interesting sort of language where he repeated things he heard in movies that he watched over and over. He would like a sound and repeat the words. And if you didn't get his references, well... it looked a lot strange. He also loved trains. He used to line them up all the time. And he would play quietly by himself organizing his little world. Derek was also the kid that tried my patience a great deal. I figured out early he did not communicate like other kids and you had to explain things to him differently. My mother and I called him "Dewick the Literal". You couldn't joke with him like other kids, sarcasm escaped him. And don't try to sneak up on him or scare him, he hated loud noises and bad smells and anything that would cause him sensory overload. When he asked you a question, you would have to break it down to the fundamentals. But I liked that he made me really think about things. And I liked that he really thought about things. You could tell he had a lot going on inside his head. I KNEW my child was a brilliant thinker. He thought right outside the box. All of these things I describe to you are signs of autism. They don't really seem like them, do they? His last year of pre-school, they cornered me and told me he was not ready for kindergarten and he was going to fail all the tests. They said he was slow. I had him "tested" but really, I think they set him up for failure and to be held back a year. I regret letting them do it. If there is one thing I would go back and change it would be allowing them to bully me into him being held back. No one tested his vision, and he was very far sighted. As soon as he had glasses, all of that "reading trouble" he was having was gone. In first grade, he went from not reading to reading on a third grade level in about a month. Still, I couldn't fix what I had done and because he was so strange and would not make eye contact and talked about things the teachers did not understand and made strange connections of one thing to another, they labeled him slow. I had meetings with teachers. They would tell me I would be lucky if he graduated high school and I had to accept that my child was not really going to make it academically. They made all kinds of dire predictions. I remember saying "When my younger brother was seven, his second grade teacher told my mother he was slow and stupid and would never amount to anything. He speaks and reads five languages. One of his languages is ancient Greek. My mother knew better and so do I. You know what runs in my family? Weird and misunderstood. But stupid doesn't run in my family. You don't understand my kid and one day, the level of his intelligence will shock your small little mind. He is more brilliant than you can possibly imagine." And I KNEW this. In my gut, I knew this. He seemed a lot like my brother, a deep well of intelligence with some social challenges. Challenges my brother overcame, mind you. (Incidentally, this brother who wasn't going to make it out of high school has his PhD.) In fourth grade, he changed schools and the school suggested some testing be done so we could figure out his processing difficulties. It was clear he just thought about things in a different way. I was fine with the testing. I wanted to know how we could best help him show what was inside him. They brought me back the test results after two months. Autism. Wait, what??? Kids with autism did not speak, right? Weren't they trapped in their own world? I had seen a movie of the week... I had NO idea. Turns out, not so much like the movie of the week. Also, the counselor explained it to me in the worst way. She said "Well, he fits none of the specific patterns exactly. He's a complete mystery. It's like he has a smattering of things that we can fit into this diagnosis but if we classify him this way, we can get him help. So we are calling it "Pervasive Developmental Disorder". So that we can get him intervention and help to get through school." Well, I thought, he definitely needs some help with things. In spite of him being so smart, he doesn't understand the point of school, so he won't apply himself. You see, Derek had not figured out yet, how school could LITERALLY benefit him, it was just somewhere he had to go and endure every day. In other areas, he was excelling off the charts. I know it sounds frivolous but he figured out every video game that came across his path. He would finish them in half the time everyone else was struggling with them. And he was designing games in his head. Spending hours figuring out how it worked and what went into creating a game. It was not just a hobby. The way he was thinking about computers was quite advanced. I know it's one of those things that mom's say, but I knew my guy was smart in ways the world could not begin to imagine. The world does not understand autism. Does not understand how his brain works differently from others. I am not sure I understand it completely. It has definite drawbacks. Socially, he struggles every day with understanding all these crazy unspoken social rules. Why is it that we can't just say what we mean? Why do girls have to be subtle? Can't they just tell guys they like them? Yeah... poor kid does not get subtle. But what he does get is ART. He gets architecture, form and structure. He gets how lines fit together. He understands how to use Photoshop and how logical things fit together and he gets it in a deep and intuitive way. He made this figurative language lady have to re-think her vocabulary. He teaches me how to be a better me. The gift of autism is this kind of understanding that we mere mortals don't have. His BRAIN has laser focus. I remember his pre-school teacher suggesting to me that he had ADHD. Idiot. This is why she is not a doctor or a very observant person. Kids with ADHD don't have laser focus. I laughed out loud at her. I think she might have been offended, but she really was grasping at clouds in the sky and thinking they were made of some sort of tangible cotton. Today, he is a college student. This is something his high school special education counselor said he would never do. She told me to prepare him for trade school because he didn't have what it takes to go to college. She wanted me to "manage my expectations". I was furious, livid. I turned on her in an instant. "Did you tell him that? Did you tell him he would never go to college?" She flushed and lamely said "Well no, but..." I interrupted. "Never tell him that. Or I guarantee you this, I will make your job disappear with the hell I will unleash on you. You had better not even whisper that in your sleep." She was completely taken aback. "Mark my words, lady," I said. "He has not begun to reach his potential. One day, he will be able to identify every part of your computer and you will still have no idea what F4 does. Meanwhile, he will have an advanced understanding of things you can't even begin to wrap your brain around. You have no idea the greatness in him. I'm sorry you are too small minded to see it but I will not have you put arbitrary limits on my son because you don't understand him." She apologized in some pathetic effort to cover how badly she had messed up, betrayed her student, betrayed her job and betrayed her school. I think she learned a thing or two that day. I hope she did. Derek just certified in photoshop and the computer I type this on... he built it for me. I think the best part is that I was right about him. I was right that he was brilliant, I was right that he was special, and I was right to believe in him. How could any mother ever be wrong about those three things?

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