Six Years Old, Plus One Day

Yesterday my beautiful boy turned 6. He really is gorgeous. Big brown eyes. Tall. Sweet, cherubic cheeks. He is so squeezably soft that I hold him close often. Luckily for me, he still allows this. The day is coming soon, I fear, when I won't be able to grab and hug my son whenever I feel like it.

This is my diary about raising a child with Asperger's. Yes, this sweet, loveable child of mine has a disorder, and this disorder often makes him appear not-so-loveable to those who have to work with him; teachers, aides, case workers, etc. My son can turn from sweet and cute into a screaming, hitting, kicking, swearing monster quicker than you can blink. It's not a pretty sight. It used to scare the crap out of me. I'm used to it by now, but it is still a shocking sight to strangers.

Of course, everyone blames me. I am his mother. I raised this monster, this angelic-looking child who turns into the spawn of satan quick as a flash. When he throws a tantrum in a crowded Target store, or smacks a kid in the face on the playground for taking the swing my son wanted, it's me who gets the glares, the snubs, the looks of utter disgust.

Every once in a while though, I cross paths with someone who knows, who has a child just like mine, who has had the school ask when their child acts up, "is there anything going on at home?" And we connect, you know? We are foreigners who meet up and realize we both come from the same country. Our children link us. We understand each other. We don't judge when we see a child throwing candy across a store while screaming, "I HATE YOU!!" at the adult with them. We look at that parent and think, oh, I know you! I have been where you are now. We are kindred spirits. Such a cliche. But oh, those moments when I find a parent like me, when we connect, are sublime.

I can tell you all sorts of horror stories. It's sort of sad when you think about it. My son is six and already I have jillions of awful moments I can dredge up and offer to others. I try not to scare people; I want to use these moments of horror for good. I want to educate people who don't understand what it's like to raise a child with Asperger's, and I want to offer my teeny sliver of knowledge I have acquired through lots of sweat and tears to those who have children like mine.

Those of us with young children with Asperger's are still fighting the fight that parents to dsaibled children started about a generation ago. the fight has not been won. Those who came before us have won many decisive battles, and they have brought our children farther than anyone could have imagined in 1950. I bow down to these people who fought so long and so hard, and I intend to not only keep the ground they have acquired but to forge even further into the uncharted territory. I want our children to get a better education than the children before them. I want every child to REALLY get a fair education, and not just have the schools pretend they are educating our children equally.

It's a tough battle. I have already had my son's IEP rewritten three times. He's only had one for a year and a half. I have yelled at the principal of his school (I am NOT proud of this, but he was wrong). I have sent out frantic emails cc'd to about 50 people ranging from my local school district to state level and even to federal level. And if I get responses from any of these people I respond to them and keep their emails and I collect "friends"; people I can turn to who will be on my side when I need them.

The newest IEP went into effect a week ago. The decision we all arrived at (including my parent advocate, who has just come on board to help me while I fight what has often seemed like a losing battle) was to screw my son's education - he needs to learn how to act like a normal child. The academic portion of my son's schooling has been tossed out the window and what the school is doing now is trying to teach my son how to get through the day without beating someone up. And we're building his self esteem, because he has grown up believing himself to be a pretty rotten kid who can't behave and who doesn't deserve to be treated well in schools or daycares.

My son has been kicked out of 7 day cares. He was physically abused in two others. People get pissed at my kid. I don't excuse what they do - I go to the police, actually - but I understand. I can understand without saying it's right or okay. But many times I myself have wanted to thrash my child. Sometimes I have punched the wall instead of my son's face. I deal with this constantly - who is going to lose patience with my son and want to smack him, and will they do it?

At this time I thought that once my son got into school, we would have survived the toughest part of my son's childhood. How seriously deluded was I? I truly believed that my son would go to school, get his IEP, and he'd be set. They had to educate him, right? They had to keep him, right? They had to work to do the best they could with him, right?

Wrong, wrong, and wrong. This is just the beginning. There is no end in sight. I used to get upset when I would think too much about this, but most of the time now I just accept it and go on. My son is a worthy cause and I keep on fighting for him.

He may be a monster to some, but he is my beautiful baby boy. He is smart. He has a great sense of humor. He eats all sorts of exotic foods (recently he asked if we could go to Olive Garden because he was "in the mood for calamari). He loves to be held. These are all sort of odd for Aspergian children. I hit the jackpot in these areas.

Plus, he is simply amazing. He is my best reason for living. So remember always as you read this story that this is, in the end, a true love story. Because I love my son more than I ever imagined was possible. I see inside of him the shining, true spirit that exists, even when he is monster-like and begging for a good smack. I tell myself my son was put on this earth to do something amazing. After all, aren't we all?