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The F-Word I Worry About for My Son on the Autism Spectrum

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Editor's Note

This story has been published with permission from the author’s son.

If I have any regrets since we first heard “The A Word” (autism), it would be the endless hours I spent worrying about the F-Word. The F-word I’m referring to is much more caustic to my heart and my ears than the one that rhymes with truck. The F-word I’m talking about is: Future.

Yeah, that F-word.

You get it don’t you? The future is unknown. The future is shrouded in what if’s. The future does not provide a money back guarantee if you aren’t satisfied, so, the future scares the hell out of me. And with all that uncertainty and all that worrying, that one F-word caused me to miss so much of today, worrying about tomorrow.

Look, I know I can’t bury my head in the sand to hide from what scares me, even though I really, really like the warmth of the sand and the way my head feels when it’s shrouded in the darkness of denial and ignorance while buried there. But, I can try to appreciate the here and now while planning for the there and then. Every so often, when my head is nicely buried in the sand on a beautiful beach somewhere and the scary future is unable to find me, there are moments that yank my head up out of the sand and I come face to face with the future.

The most recent moment was when I was asked to complete a parent survey for “transition planning” for Ryan’s future. At first I thought nothing of it, I opened the survey and began to fill out the easy stuff. You know, his name, date of birth, graduation year, etc. But then it got scary, and since there was no sand for me to stick my head in, I considered sticking it in a really full glass of wine instead.

I didn’t though. I faced that damn future (and that survey) totally sober and sand free and it sucked. You see, as long as Ryan is sheltered in the protective educational system bubble, I know that not only will his teachers look out for him, but by law they have to support him, educate him and keep his best interest at heart. That nice bubble will burst once the future sneaks up, grabs him and chucks him into the deep end of the adult pool and there won’t be nearly as many life preservers. And there won’t be sand deep enough for me to bury my head into.

Questions like, “Will he be able to accept criticism from a future employer?” and, “Does he or will he be able to talk in a respectful tone at all times?” At all times? I mean, come on, we have all had that boss that we know we are smarter than and it’s very, very hard for those of us who understand the social norms of the job hierarchy to remain respectful to those kind of people. So will he talk in a respectful tone “at all times?” That depends on how ignorant his boss is. There wasn’t a box to check for that option.

There were more questions about independent living, handling money, transportation and relationships. Most of my answers involved worry, worry, guess, worry, worry, hope, worry, worry, pray.

I realize that none of us know what the future holds. And whether you have a kid with autism or a neurotypical kid, the future does not provide any guarantees, any reassurances or any promises for anyone. But for some who are seen as “different,” who don’t quite “fit” what society expects, treading water in that deep end of the adult pool has to be exhausting. And that thought pulls at my mama heart and makes me want to stick my head back in the sand (or in that really full wine glass).

But, I don’t. You know why? Because the future is coming, whether I like it or not. Yes, I can appreciate the here and now, but I can’t be dismissive to the there and then. My son is two years away from the deep end of the pool and sticking my head in the sand isn’t going to prepare him for any life preservers that he may need when that protective educational bubble pops.

So, I finished that damn transition survey with little to no guarantees of what the F-word holds for my son, and I crossed my fingers for a future that is filled with hope, neurodiversity and acceptance. Then I left that survey and my worries of tomorrow behind on my laptop and checked into the present, where my son currently lives, so I wouldn’t miss another minute of today.

Originally published: March 15, 2018
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