Tuesday, 17 January 2012

My son

My son was born during a thunderstorm one hot muggy June evening, almost 15 years ago. His cheeks were chubby, his hair dark, his eyes alert. He was a tad on the big side, at 9lbs 11oz, and just fine. We went home with him breastfeeding normally, happy with our perfectly healthy little boy.

Within a month I noticed his eyes crossed a bit. At first the doctor said he'd outgrow that but soon referred us to a pediatric ophthalmologist. Otherwise he was perfectly normal and alert baby, chewing on teething rings, rolling over, and reaching for toys. He had some odd quirks. I put a quilt on one side of his playpen to keep the hot afternoon sun off him. Son would move over to that side and stick his head under the quilt then lie there quite happily with his head in the dark. I'd move him and he'd go right back there. He was also very quiet, never babbling, never cooing. He rarely cried. My Mom's nickname for him was silent Sam. He also rarely startled. I went behind him, more than once, to make a sudden noise... just to see if he could hear me. He could, so I just chalked it up as another quirk.

Son went in for strabismus surgery when he was 19 months old. The surgery was a success beyond the ophthalmologist's wildest dreams. She'd figured he'd continue to need glasses but he didn't (and still doesn't). Finally he was completely normal (the above picture was taken right after his eyes healed)... except he wasn't talking yet. Everyone kept saying "he's a boy, they start later" or "he's the youngest, his sister is talking for him". But I was concerned and, as soon as he turned two years old, I got him on a wait list for speech therapy. I couldn't put him on the list any earlier.

Through the next year he was on the wait list for speech therapy. He grew into a sweet and good-natured little boy. He loved buses and would smack his lips whenever he saw them. His favourite show was Magic School Bus and he would regularly come up to me, smacking his lips, and carrying a video for me to put on for him. He also loved Thomas the Tank engine and carried the little tank engine around everywhere. Somewhere we have a family photo with him clutching that beloved toy. His favourite bedtime stories were "Goodnight Moon" and "Freight Train". I looked all over the place for books and toys on the Magic School Bus but there was nothing for his age group.

He finally got into speech therapy when he was just over three years old. His receptive language was normal but his speech was significantly delayed. The therapist quickly realized son's motor skills were behind too. He was assessed for both occupational (fine motor) and physical (gross motor) therapy but was one point above acceptance for gross motor. He needed 25 or lower for therapy; he scored a 26. Soon I was ferrying him to several therapy classes as well as working on speech and motor skills at home. His speech therapist commented on son's fleeting eye contact but I had no idea what she was talking about and she didn't push further. My thought was "So, he's a busy active boy, and doesn't always look her in the eye. What's the big deal?"

Then son started Junior Kindergarten. He was thrilled to pieces, his older sister had already been in school for two years and he wanted to go so badly. He used to try and sneak into the lineup before school. Usually the kids would loudly point him out. Some mornings, if it was really busy, he'd manage to sneak inside the classroom and would look so proud of himself... until he got pulled back out again. Now it was his turn. He had the same classroom and same teacher as his sister the year before. He was overjoyed to be finally in school.

It didn't take long before it was obvious something was going on. Daughter knew the alphabet before she started school and was recognizing some words. Son didn't know the alphabet at all... despite lots of stories (including alphabet stories like Chicka Chicka Boom Boom)... alphabet colouring books... and educational shows. His teacher also commented on his fleeting eye contact except she brought up autism and a need for further testing.

Autism? There was no way my little boy could be autistic. Autistic children rocked back and forth, banging their heads on the floor and screaming. They waved their fingers in front of their faces and were oblivious to everyone and everything around them. They lived fully in their own little world. That was not my son! My son loved being around people, we joked he'd go off with the mailman if we let him. He never waved his fingers in front of his face. He was our little bird and flapped his hands when he was excited... but not in front of his face. And he never banged his head on the floor or rocked back and forth. He'd bolt into traffic if I didn't have him on a leash but he never rocked or banged his head.

I remember the school psychologist asking if son ever lined up toys, rocked, head banged, echoed us (he did later but at the time he was still quite nonverbal), or stare at fans and his fingers. He did none of those things and the doctor decided nothing was wrong except for a speech delay. The next year he went into a speech class and, the following year, went into a multiple exceptionality class with a diagnosis of ADHD.

All this time I was still waiting for him to outgrow his speech delay and be normal... go on ADHD medication and be normal. But, as he moved from grade two to grade three I began to realize something else was wrong. The ADHD medication was a bust. All it did was cause him to lose weight. And, as he got older, his quirks got more and more obvious. His voice just sounded... funny. Almost like he had an accent. I remember asking the speech therapist if there was any way to work with him on his tone of voice. She looked at me blankly and said "no" she only worked on speech sounds. He was (and is) fascinated with things. I had trouble throwing things out... he'd become obsessed with parts of things. Wheels broken off dinky cars for example. I'd drag him out of stores with him crying "I need... I need..." while trying to throw himself back into the store for what he needed. A bag of charcoal... a box of tampons... a tin of canned tuna... it didn't matter what it was, if it caught his eye, he needed it. He still would suddenly dash into traffic without warning. And, as his speech grew, he began to echo.

My sister, a child and youth worker, came home for a visit that spring and announced after watching son that he looked autistic. By this point I was a lot better on the internet and started googling. Soon I agreed with her. Then I began to pressure the school board to have him tested. They finally agreed to test for learning disabilities (son was several years behind in reading by then) and, if they felt at the end of the testing, he might show signs of autism, they'd do further testing. At the end of the testing I was asked if I'd be willing to have him tested for autism. Would I mind???

A year after my sister pointed out her concerns, son was diagnosed with high functioning autism. At first I was relieved, he had a diagnosis, I had something I could use to look for help. Then it sunk in. Autism. This was not something he'd outgrow. This was a label for life. When he was 80 years old, he'd still be autistic.

I remember being in the grocery store when was was really little. Two older kids were looking at him and commenting to each other about how weird he was. I called them on it, asking why they were teasing a very little boy. Both looked embarrassed and stopped immediately. At the time, I wondered why they'd gone after him, he was a normal little boy, he was just acting a bit silly like most toddlers his age. But, as he grew, the gap between him and other kids widened.

These days he's a teenager in high school. He loves playing Minecraft and saved up for a 3DS. He's obsessed with elevators and Nintendo (Minecraft is quickly catching up). He often talks about what sort of house he's going to live in when he grows up. And it breaks my heart. I can't imagine him living on his own. I still have to remind him every single day (and I mean EVERY SINGLE DAY) to brush his teeth, wear socks, and eat breakfast. I still pack his lunch every morning and pack it in his backpack so he won't forget it. I can't give him more than two things to do, else he forgets them. I can't say "Son, you need to wash the dishes and put your gym clothes in your backpack. Oh and don't forget to put your lunch bag in your backpack too." That's three things and he'll forget at least one of them.

And it breaks my heart when he makes friends... and they slowly disappear. One day I'll realize that, hey, I haven't seen so-and-so in several weeks and I'll realize that, yet another child has decided son is just too weird for them to hang out with. It's a mixed blessing that son, so far, hasn't really noticed. As long as he's got Nintendo products, YouTube videos (I had no idea there were *that* many videos on elevators), and Minecraft he's happy. Meanwhile I cherish the people in his life who simply accept him for who he is and don't act like autism is contagious.

He picked up dinner at a local restaurant this evening. He walked in the door and said, scornfully, "Those guys in the elevator were weird. They called me mentally challenged." I scoffed along with him. I'll wait until I'm in bed and away from him before I have a little cry.

1 comment:

  1. K - That's OK, I had a little cry on your behalf (and mine too) just now anyway. It dosen't really help to know that I *know* where you're coming from, but I do. ((hugs))