Accidental Tourists in Autismland

I spent the better part of last week cleaning my office > so I could get to the files > so I could fill out financial aid paperwork for Roman’s older brother Quinn, who is a high school senior and applying for college. I’m embarrassed to admit it, but I’ve also been prone to sudden, stormy crying fits of late. Damn you, mental junk drawer!

For the most part, my time is helpfully consumed for me: schoolbus, grocery store, mealtimes, cleaning, child minding, child hauling, Thursday roller skating, daily *ahem* walking, writing, working, and a little sleep. Nothing new there- I’m a mom. My wheels - and the world - keep spinning.

But filling out these forms – NEW FORMS – stops me in my slippers. I think I’ll never fill one of these out for Roman. He’ll never go to college. This begs the question: What will he DO?

Kelley, this is the rabbit hole. Rabbit hole, this is Kelley. *commence freefall*

Useless, I know. The future cannot be predicted for ANYone. And yes, I’ve read Welcome to Holland,* and I do love the tulips. Although truth be told, the wooden clogs are terribly uncomfortable.

We are accidental tourists in Autismland. And even though we feel like we are being hazed at times – or punked at the very least - we’re more open to differences, more tolerant, more generous, and more thankful people than when we started this parenting gig. Fact.

But right now, I am in transition. This college thing is going down. We will have a Quinn-shaped hole in our lives in just half a year’s time. This is what we expected from the start, growing our kids to independence so we could have a little ourselves. We are on the empty nester autobahn, but with the unexpected final destination of partial empty nester. That’s how things go down in Autismland- bittersweetly.

The central question in a melodrama is what if? I’ve been trying to clog the tear ducts and close the junk drawer by reading Adam Phillips’ philosophical Missing Out: In Praise of the Unlived Life. Phillips writes that “we may need to think of ourselves as always living a double life, the one that we wish for and the one that we practise; the one that never happens and the one that keeps happening.”

He argues that the very frustration of missing out paradoxically allows us to identify our dreams and goals, and that we ultimately “learn to live somewhere in between the lives we have and the lives we would like.”

Mind the gap. Because at times, the unlived life feels like a phantom limb; a sharp pain, an itch that can’t be scratched. I read that sometimes a mirror is used to help people visualize a missing limb; the sudden symmetry tricks the mind into believing that nothing is missing. Until the mirror is removed. Then the rabbit hole appears and trips you up.

Roller derby teaches skaters to fall small and get up fast. The thing is though- sometimes falling hurts like a mother.


* A poem written by Emily Perl Kingsley in 1987 about a parent coping with a special needs diagnosis. Wherein an Italy-bound vacationer finds the flight plan has been hijacked and she’s unexpectedly headed for Holland – from Normaltown to Autismland - the moral being not to pine over spilt pecorino and enjoy the gouda instead. For a real eye-opener, give Welcome to Beirut a read. 

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