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When Will I Know?


Ah, the silence.

Today marks the first day since Friday that both kids have been in school, and I admit, I really needed them to go back. Even Justin was desperate to return, handing me his shoes yesterday morning and getting out his backpack (his school ended up with a delayed opening, and although my home district was closed and not busing that day I actually spent two and a half hours driving him for four hours of school, and it was worth it.) Despite trying to engage him in the house for three days straight ultimately he was bored, and the smile when his aide came to the car to get him was everything.

Dude loves school. And yes, I know how lucky I am.

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Of course there are only so many movies we can see or games we can play (or food Momma can eat,) so by day four we were all a little stir crazy. In the winter there isn’t much to do with Justin other than take him out to a restaurant (which is a win-win for both of us, as my snow days mantra is simply “cook-clean-eat”). Unfortunately so much time off gives me time to perseverate, at which I am gifted (despite my attempts to remain in the present my abilities are relentless). I start to go down the post-21 road, unravelling the adult autism world puzzle that is still eight years away but which I know will seem to be here in about five minutes.

Okay, a slight exaggeration but I hear the teenaged years go fast.

The truth is I’m not really sure what I want for him. I have friends who have worked very hard to make sure their adult son is engaged in activities most of the day at his group home, and another one who has created a very positive “life of leisure” for her two adult autistic children in their home. All three individuals are thriving in their respective placements. And honestly, I just don’t know what’s right for Justin.

My big question is, when do you know?

Justin is predominantly non-verbal, but that doesn’t mean we don’t know what he likes and wants. He makes it very clear when he’s both pleased and displeased with something, and it’s apparent that he’s mostly pleased when he’s in our home, either organizing, playing on the computer, or rewinding the same segment of a video on his DVD player a million times. When he’s home it’s mostly leisure time for him except when he plays academic games with me on the computer, but since he’s in school a good portion of the year (his school has eight weeks of summer school which is a complete sanity saver) I feel he has a full and productive life, with work and play beautifully comingled. There’s a nice balance for my boy, one he really responds to, one which has made him a mostly happy kid.

And my challenge is how to create that balance, how to figure out what is the right balance down the adult road.

I know some of you who are reading this with adult autistic children are probably thinking I’m crazy to think I’ll actually have options, as the landscape for autistic adults isn’t particularly attractive at the moment. But I have to say I’m seeing some change, albeit slow change, and it gives me hope. I’m hopeful that my biggest problem will be to have to make choices for him- should he work, how often should he work, or should he just “be?”

I’m happy to say that in the twelve years since he’s been diagnosed there haven’t been too many times I haven’t known the right path for him, and with autism that’s pretty remarkable. Somehow with each fork in the road there was a little (often nagging) voice that told me what to do, and as I look back at our choices I have to say I have few regrets.

So as we start this transition process in a handful of years I’m just hoping that I’ll know what to do, that my little voice will guide me, that the options will be there and waiting for him.

Here’s to both knowing, and to hope.

For more on my family visit my blog at
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