Around the end of October this year my eight-year old son was diagnosed with Aspergers, which is a ‘high functioning’ form of Autism. He is on the ‘high functioning’ end of the autism ‘spectrum’.
Every time someone says that to me it feels like they are comparing my son to the newest technological equipment used for pap smears.
This diagnosis wasn’t totally out of the blue; there have been signs something wasn’t quite right since my son was a baby. He didn’t really communicate at all until he was two (he wasn’t even gesturing), and he didn’t use speech as his regular form of communication until he was three.
And then there was the tantrums. Holy good Christ, the tantrums. Four to six full-on, screaming screaming freaking out with the screaming tantrums per day. For any random thing.
He was kicked out of three daycares by the time he was three and a half years old.
For the most part, all of his behaviour problems were contributed to the fact that I was just a shitty mother. My son looked perfectly normal, therefore if I didn’t suck so tremendously at parenting him, he would just know better.
That was the position of my extended family, the daycare(s), the doctor, and even some of my friends. I was subjected to endless parenting tips because clearly, based on the behavior of my devil child, they were desperately needed.
But, deep down….I knew better.
My boy was not experiencing the world in the same way the rest of us were. He wasn’t just a spoiled little shit disturber, he was kind of ….stuck. What he saw, felt, heard and tasted was just different than the rest of us, and although we couldn’t see ‘it’, ‘it’ was often unpleasant for him.
I started calling for help, and found a fantastic organization called the ‘Early Childhood Intervention Program’. They are small and have no money (as evidenced by the fact they don’t even have a website I can link you to), but they are wonderful people who COME TO YOUR HOUSE and help teach you ways to play with your child that will stimulate learning and help remove communication barriers. And not once did any of my interventionists give me the, “wow, what a little bastard you have there” look.
I also was lucky enough to finally find a daycare that was up for the challenge my son brought them. They never considered the idea of cutting him lose because he was just too much of a pain in their ass to deal with. If they came up against a problem, they tried to fix it. Sometimes it would work, and sometimes it wouldn’t. But they didn’t give up on him and consequently, he had a place to go everyday where he felt safe and happy and was surrounded by people who didn’t just tolerate him, they loved him.
I look back at that time now as the two years of cease fire. We coexisted in this world without having to do battle.
Oh, how I wish I knew then what I know now. I would have enjoyed that peace a lot more that I did.
My boy had to leave that wonderful daycare to start school. I knew it wasn’t going to go well, so I tried to meet with the kindergarten teacher prior to school starting to debrief her on the ways and means of Jake. I wanted to give her a little history, and possibly pass on some ‘lessons learned’ from the daycare regarding how Jake needs to handle group situations.
The kindergarten teacher poo-pooed me and chalked me up to a nervous mom who was apprehensive about her son starting school.
Her - Oh, Mrs. FoN, I’ve been doing this for many years now, and they eventually adjust.
Me – Um, maybe….but…Jake has some communication and sensory issues since birth, and….
Her – You don’t have to worry about it now! He’ll be in great hands.
Me – I don’t doubt you are the most kick-ass kindergarten teacher since the chick from Romper Room, but there are a few behaviours you should be prepared for. The daycare….
Her – Really, we will do just fine. Have a good day!!
*hustles me out of the room*
Predictably, that same teacher called me four days into the school year. It wasn’t going that well. No shit? Hmmm.
Who would have thunk it, huh?
It was that phone call that started the fight I have had to wage and will continue to wage for the foreseeable future.
I knew Jake was on the autism spectrum, but I was really scared to be given that news.
From someone with more credentials than Dr. Google.
But, I was repeatedly told from many sources that once a diagnosis was made all kinds of wonderful doors would open and a flood of services would be available at my finger tips and we would all live happily ever after. Just like all those autistic kids on television who are charming and oh so smart and who have families who learn a wonderful lesson about love by having their lives enriched by the unexpected gift they were given of their autistic child.
So I did it. I finally pushed for a diagnosis and I got one. Aspergers.
My biggest fear of all was that once my son was given that ‘autism’ label he would immediately turn from the rotten little kid who just has a shitty mother who never taught him manners, to the retarded kid who doesn’t need to learn to read anyway so let’s just teach him how to mop up the place. You know, a skill he really needs.
Unfortunately, I was right.
Since that faithful day in November we received the official news of Aspergers, I have been battling my son’s school in an effort to get them to focus on ANYTHING other than just his behavior. He is in grade three, and suddenly the focus is not learning cursive writing or times tables, but how to put up his hand before asking a question instead of just blurting something out. A useful skill, sure, but so is READING.
I would do anything to go back to people just assuming I’m a bad parent who indulges or ignores her son and that’s why he sometimes acts like a little asshole. I would have happily taken that bullet for the rest of my life if it meant others would be required to hold my son to the same standard they hold the ‘normal’ kids.
Now I fight. Every single day. To insist my son learns the same thing the other kids are learning. LEARNING is not his problem. Learning while surrounded by 25 screaming children, colourful posters, bells ringing, music playing, that sickly glue/vomit/lunchmeat smell schools have, and the teacher yelling over all of it….that’s his problem.
So he tries to deal. He tries to deal by putting his hoodie on and wearing his hood over his head.
Not allowed in school – it’s considered disrespectful.
So he crawls under the desk to escape.
Not allowed in school - what if ALL the kids wanted to crawl under the desk?
So he puts his arms around his ears and starts banging his head on the table.
Retarded kids do that kind of thing. What are you going to do, huh?
Why don’t we back it up a few steps and just let him wear the fucking hood? There is a big difference between wearing a hood in class as a way of coping and telling Mr. Vernon to Eat. My. Shorts.
And after you let him put on the fucking hood, teach him to read, would ya?
So, here we are. No longer little bastard with the shitty mother, but the concerned mother and the poor little retarded boy who lights up the world with his smile and has a wonderful future ahead of him greeting people at WalMart.
So, the fight wages on. Now we have some new goals. Jake is going to get an education, and I am going to make that happen. And hopefully stay out of prison in the process.
If I go a super long time between posts you’ll know why.
No Lifetime movie moment ending here. Sorry about that.