Puzzle Pieces, Part 5: Would You Rather?

I don’t really believe in any of that “Be careful what you wish for” stuff, as if fate is going to grab your words out of the air and make you regret them.

But I do know that there are times when some naïve comment you’ve made in the past takes on new meaning. Your brain revives a tucked away memory at just the right moment to remind you how clueless you once were. To keep you humble, I guess.

 

By the time our son was officially diagnosed with autism, two months shy of his third birthday, my husband and I mostly knew it was coming.

We’d been through the “he’s just a late talker” stage, but hadn’t seen that language improve. The early intervention specialists who assessed him had already blown the lid off any lingering denial that this was more than just a speech delay.

He’d been working with speech and occupational therapists for a few months, professionals who couldn’t diagnose, but kept saying things like, “There’s a technique that works really well for one of my other clients…Now, that child has autism…but anyway, we could try this with your son and see…”

Heck, I already had an autism awareness ribbon on his communication board, and through work, had even had an introduction to the world of disability rights.

During the ADOS (Autism Diagnostic Observation Schedule) assessment by the psychiatrist, I wasn’t surprised that my son didn’t participate in her make-believe birthday party, help her make a Play-Doh birthday cake, or pretend to blow the candles out.

I was just surprised he didn’t try to eat the damned Play-Doh after she kept insisting it was “cake.” Even before I knew the phrase “literal thinking,” I knew how my kid thought.

A short time after we left the doctor’s office, fearful of this new path yet relieved to have some answers, I was mulling over what the doctor had said in explaining autism to us. Substantial difficulties in communication. Restricted repetitive behaviors and inflexible adherence to routines. Qualitative impairment in social interaction.

I gasped as my brain did that fun “Hey! You forgot about this!” trick:

Ten years earlier. A hotel room. A group of a dozen college students lounging on the beds and the floor, the night before our state-wide college theatre festival competition. Just killing time, playing a game.

Would You Rather? the game posed, distilling the world down to simple either/or scenarios. Safe in hypotheticals, we laughed as we faced a multitude of evils—debating whether to eat worms, or spiders; to suffer bad hair, or bad skin; to starve, or drown—and declared our stances on a few more “realistic” situations too.

One choice seemed obvious to me that night.

Would you rather have a child who is very socially adept but academically less-than-average, OR a child that is super smart but lacks social skills?

The way I remember it, I stood alone in my confident choice of the brainiac kid. More of a book-nerd among my extrovert drama-nerd friends, I dismissed their arguments favoring social ability. You can always look something up if you need to learn it, they said, but without social skills you can’t survive a job interview, hold down a job, have solid friendships, make connections in the world.

Peeshaw, I said. Peeshaw.

Oops. Be careful what you wish for?

I just laughed when that memory surfaced. Of course my son’s autism is much more complex than any either/or scenario—but if my past self only knew how much of our daily life would focus on the intricacies of social interaction…

After his diagnosis, we launched full speed into the exciting autism-parent version of the Would You Rather? game:

Picture-communication or sign language?

Supplements or pharmaceuticals?                      

ABA or RDI?

Quiet hands or respect the stim?

Inclusion or self-contained?

Traditional or alternative doctors?

Autistic or with autism?              

Light it up blue or embrace the rainbow?

Despite the fact that our community can be stubbornly split along any of these lines, in my experience, parenting a kid with autism doesn’t easily fit any either/or decision.

I’ve learned to take pieces from multiple interventions and theories, I try to listen equally to experts, parents, and autistic adults, and I make choices that hopefully will lead to the best outcomes for my unique kid:

I want my son to grow up to be happy, healthy, and safe.

I wish for him to be productive, confident, and loved.

I envision a world in which people all across the autism spectrum are understood, respected, and valued.

That’s all that I would rather.

AutismAwareness2016

Happy Autism Awareness Month. Stay Quirky, my friends.

 

***This is the final installment of a 5-part series in honor of Autism Awareness Month. As the parent of an autistic teenager, it’s hard to remember a time when I wasn’t “aware” of autism, since it is such an integral part of our everyday life. But there was a time – in fact, the majority of my life – when I did not know anything about autism. Throughout April 2016, I wrote about a few moments from the months and years just prior to my son’s diagnosis, when pieces of the “awareness” puzzle were just clicking into place for me.***

 

Read Part 1 here: THE RIBBON

Read Part 2 here: WHEN HE’S READY

Read Part 3 here: HISTORY LESSONS

Read Part 4 here: THE FIRST ONE

 

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