Introducing Joseph and Kass

Hi, I'm Kass, and my eight year old son Joseph has Asperger's syndrome. There are many reasons why I, a woman who enjoys writing as a hobby, have waited until Joseph was eight to begin blogging about our lives. I think that maybe I've been working through the stages of grief and have finally come to acceptance. At least, I hope I'm at the acceptance stage.

I have found myself having difficulty relating to parents of neurotypical kids ever since our diagnosis, but sometimes parents in the autism community can be overwhelming too. I don't feel, as so many parents express, as if I'm at war with the spectrum, although if I find a leprechaun at the end of it I'm definitely kicking his ass and taking his gold. I feel like I'm at war with the school system, and sometimes, the entire world.

The school tends to try to characterize me, for the sin of demanding that they provide enough special ed services, as someone who is trying to inhibit Joseph's progress. As for the world, they sometimes try to be understanding, but the well-meaning but totally misguided advice wears on me, as does the constant need to 'splain Joseph and myself. People don't always know quite what to do when the child who's just been participating in a normal activity, for example at a day camp at church, falls in the floor and becomes willfully unresponsive because the ribbon on his craft project came untied.

Asperger's disorder, or syndrome, is a high-functioning spectrum disorder, but it definitely provides some opportunities in life, if by "opportunities" you mean the corporatespeak version of the word "problem." I often feel like the person who has to park in the disabled parking space despite being able to walk short distances, who then gets side-eye or outright hostility from people who think they don't look disabled enough. Joseph can appear to be typical to the casual observer, or the unobservant one. He is in regular ed with support from special ed, and he excels at his schoolwork - as long as the teacher is willing to remind him multiple times to complete each section of whatever they're working on. At lunchtime, he might not eat at all because he's too disturbed by what his neighbor is eating, or he might get lunch detention from an uninformed lunchroom aide who misinterprets his stimming for "hitting himself." He's been known to have a complete meltdown and have to be rescued by an understanding teacher during an assembly because the music is too loud.

Yet, he has a large vocabulary, he doesn't wander away from the house, he finally stopped soiling his pants at age seven, and he sometimes displays insight into his own situation. I know where we've been, and how far we've come since that day in 2005 that I learned he wasn't just quirky or slow to talk. And I feel guilty for complaining, or even asking for support from the autism community, because I see parents with children on the spectrum who have much greater challenges. There's a chance, how great of one we don't know, but still a chance, that Joseph may someday live on his own as an adult.

I'm extremely wary of those who deem themselves experts in the parenting blogosphere, unless they're doctors or teachers, so I'm not here to give advice. I'm an expert on my kid, just like you're an expert on yours, and that's all. I only want to share my experiences with other people in similar situations. Maybe I've been through something that nobody I've met in real life can relate to, but you in your home a thousand miles away will read a post from this blog and contact me to say, "that's my kid all over again, and this is what I did!" Or I'll describe a technique I used, and you'll be able to do it with some success as well. Maybe we can just commiserate. It's hard for me to reach out, and easy to succumb to isolation and bitterness, but here I am, blogosphere. I'd like to join in the conversation, even if I am almost seven years late to the party.