Would You Rather-chairs

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

 

delayed-flight

Puzzle Pieces, Part 4: THE FIRST ONE

Even though I knew my son wasn’t talking on time,

That first assessment still hit me hard.

 

We had set up a screening with our state’s early intervention program. Although our “wait and see” pediatrician had finally given us a referral, the only developmental specialist in our area didn’t take our insurance and had a months-long wait.

But luckily, I had friends who told me what our doctor had neglected to say. Through the early intervention program, we could get a free speech evaluation—and if our son qualified, on-going speech therapy.

The parent-interview notes from the initial screening show that I reported “no concerns” in any area, except for speech. I was surprised when her simple checklist of motor, speech, and social skills revealed that, in fact, my 27-month-old qualified for services in multiple areas. 

The first developmental assessment in our home would follow in a few weeks. I sat on the couch with the evaluators, fielding questions about my kid that became progressively harder to answer. I watched as they failed in almost all of their attempts to engage with my son playing on the carpet nearby. I kept apologizing—he’s being shy…he doesn’t know you, but he plays with us…oh, he can usually do that…he’s kind of stubborn…sorry.

I expressed my concerns about his speech delay but they had lots of other questions.

I explained his quirky ways of playing, that although he could place shapes in a sorter or complete a simple puzzle, “he is more interested in taking all the pieces out and making a big pile with them.” They noted his lack of pretend play, and his inability to point or use a tool to get items that were out of reach.

I off-handedly told them about his lack of interest in the other kids at his twice-weekly toddler “preschool.” That the teachers reported he was having some trouble with transitions. That it took weeks to drop him off without tears.

I laughed as I described how we didn’t turn on the vacuum without warning him. He didn’t like fingerpaints, and he was a bit of a “picky” eater. And, oh, my boy really loved to swing.

 

When we received their report a few weeks later, I wasn’t surprised to see that his speech/language skills were severely delayed. That was the reason I called them.

But the report told a more complex story than I was expecting.

… difficulties in the personal/social domain

… sensory integration issues

… areas of concern in adaptive, fine motor, and problem solving

The results were not equivocal in the least. My son was not borderline, he was not “at risk” – he had significant delays. Across every category.

I felt so guilty that I’d missed all those signs. It was embarrassing, and eye-opening, to have strangers tell me what I hadn’t recognized in my own child.

“Global delays,” the report said. For him. And, for me.

On the heels of that first assessment, more evaluators would come. Weekly therapies would begin. In six months, we finally had an appointment for an official psychological evaluation. But that first report was the roughest.

 

Even though I have binders full of reports now,

even though he’s come a long way and so have I,

even though this quirky life is just our ‘normal’ now—

That first assessment still hits me hard.

 

To be continued…

***This is Part 4 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’ll be sharing a few moments from the months and years just prior to my son’s diagnosis, when the 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

Wheelchair curb

Puzzle Pieces, Part 3: HISTORY LESSONS

When my kid was eighteen months old, and we were still a year away from the diagnosis that would give a name to his speech delay, I got a head start on disability awareness through a work project.

In the spring of 2001, I was hired as the project historian for a multimedia theatre production based on the writings and reflections of Sam L., a local 56-year-old man with cerebral palsy.

Born in 1944, Sam grew up during an era of incredible transformation for those with disabilities in this country, and his stories reflected those changes. I was brought on to collect information, photographs, and video clips to provide key historical context for Sam’s story. Read More

Part 2 pics-Blake 1-2yrs-rocks

Puzzle Pieces, Part 2: WHEN HE’S READY

By the time I was decorating my 2.5-year-old son’s first picture-communication board with an “autism ribbon,” we had been aware of his lack of speech for well over a year and a half.

My delay in embarking on speech therapy for him wasn’t exactly denial—it wasn’t like anyone said “This is Autism” and we refused to believe it. No one had brought up autism yet, and what little I’d heard about it just didn’t seem to match my son. Yet. 

We danced around the edges of his inevitable diagnosis as our son grew into toddlerhood. He was meeting all of the typical milestones—sitting up, eating solid foods, crawling, grasping, walking. All more or less on schedule. Except the talking part.

Our little guy babbled a bit. There were a few times when we thought words were coming, but what sounded like “Da” or “Ma” never coalesced into anything stronger. Read More