My name is Denise Cormaney and I live in Arlington, Virginia with my husband Mike and our 18-year-old son Alex. We’ve lived in Arlington for over 21 years now, and I still complain about the weather like it's news to me. I'm not sure how we're old enough for that math to work out, but whatever. Math was never my strong suit.

 

Those of you who've been here a while know I used to make and sell stuff on this site, specifically hand sewn items like tote bags and zipper pouches. It was fun while it lasted. Keeping up with inventory while keeping up with my life was not sustainable. I may dip back into it again; I'll keep you posted.

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I do still obsessively make things with my hands. These days it's mostly dresses and skirts for myself, and hand knit items for others (and, um, myself). I can't not make things. I can't! It's in my blood, I tell you! I think the obsessive parts of my brain collide with the fidgety parts of my nervous system and voila! Craftiness! Science was also never my strong suit.

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I also obsessively read books. Being an obsessive reader has given me two side gigs as a Book Club Discussion Leader. (It's a thing! Really!) One for a local bookstore, one for the senior citizen group at the public library. These two groups give me life; if you're not in a good book club, you are missing out. People always ask how I manage to read so many books, so I will share my little secret: I wake up in the predawn hours like a vampire. Not on purpose, I just do. Text me at 3 am and chances are I'll text you right back.The upside is that I read a lot of books in those quiet morning hours. The downside is that I can fall asleep nearly anywhere, anytime, anyplace. Except my own bed between the hours of 2-6 am. Logic and reason also never my strong suit.

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My main job these days, however, is home schooling our son Alex. Home schooling? I don't even know if that's what you'd call it. It's a long, long story. You should really check out my blog. The quick version is this: my kid is a smart, funny, loving, empathetic, awesome kid who presents to the world like he is super autistic. What does this mean to the untrained eye? It means people grossly underestimate him. Although he can speak, he types to communicate his inner thoughts with the help of a communication partner (I am one of them; so is Mike. We also have a few professionals who work with Alex regularly). The world is not yet equipped to accommodate this. It sees autistics in two categories: Bill Gates (i.e. super brainy, able to communicate through speech, socially awkward but good with computers) or Rain Man (i.e. cognitively disabled, super weird, ultimately needing to be institutionalized). My kid presents as Rain Man. 

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This means that throughout his school years, he was segregated from the general population and denied access to the general curriculum. Mike and I didn't know any better; we thought that was what he needed. We were so, so, so wrong. Once he got really fluent with typing, he was able to tell us just how miserable he was at school. I've been homeschooling him ever since. He was also able to finally show us what a smart, funny, loving, empathetic, awesome kid he is. Just 5 years ago I never would've believed this was possible. This sounds like a cliche, but I really mean it: I now believe in miracles.

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The problem as we look toward Alex's future is that the programs available for adults transitioning into adulthood (job training, life skills training) are aimed at people who are cognitively disabled. These simply aren't appropriate for him, any more than they would be for your average 18-year-old young adult. We can't do that to Alex. We can't send him to a job site to sit in a windowless room with florescent lighting to shred paper all day while the job coaches talk to him like he's a toddler. We can't, we won't. Nope, nope, nope.

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But the world isn't yet equipped to give him the support he needs (including a trained communication partner) to allow him to access a job that would be appropriate for him. He doesn't need to live the "life of the mind"; I think he'd be happy doing any number of jobs out there. But it needs to be in an environment that:

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     -fully supports how he communicates

     -accommodates the other sensory-motor and behavior challenges that come with being autistic

     -treats him like the intelligent young man he is

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So my main job these days? My job is to find a way for my kid to find his way, to live his life to its fullest potential. It's working with other parents as we knock on the doors of the systems already in place to forge a new path that our kids can walk. The way I see it, my main job these days is trying to literally change the world. Feels impossible and daunting and overwhelming and hopeful and exhilarating, all at once.

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