Hi, thanks for joining me for another issue of It’s Like This. In the previous issue, I was remembering one of the first autism conferences I attended and some advice I was given as a new parent. That reminded me of a more recent interaction – when I was sitting in the other seat.
Click the play button above and I’ll read this to you!

When my son was 10 or 11 years old, I stopped going to most of the autism trainings that I’d been so gung ho about in those first few years. This was due to a combination of financial needs (those conferences can get expensive) and a growing fatalism that there was nothing new being offered.

At that time, school was particularly frustrating and home therapies seemed to be stalling. I had watched many of my son’s special needs classmates make progress in integrated settings while our child moved in the opposite direction toward needing more individualized and isolated instruction. And as family, we were taking on a whole new area of study – the behavioral health system – as my son’s pre-adolescence brought with it some new and not-so-fun challenges.

But by the time my son was in high school, I came back to those conferences. I could skip the tracks meant to help the newly diagnosed “catch up” with their peers, but I needed the sessions that could teach me about adolescence and transition to adulthood and well, what now?

I was just beginning to recognize that we were in this for the long haul. My son was now at a private school that specialized in teaching students like him; and I’d begun to find a community of folks who were down in the trenches with me – not the ones scrambling all the time to dig their way out, but families who were hunkering down in the dirt, bringing in blankets and wine, and finding ways to get comfortable.

I didn’t fully grasp how far I’d grown in my identity as a special needs parent until I stepped into the lunchroom at one of those conferences.

I grab a chair at a table where a couple of other parents are already seated. I can tell by their piles of handouts that their kids are younger than mine. They are probably suspicious of my slim little notebook. 

We introduce ourselves by way of the standard parent bio – kids’ names, ages, genders; which schools, agencies, doctors.

Once they hear that my kid was similar to theirs as a toddler or a first-grader, the questions begin. They are eager to know what “worked” for us – did my son respond to the strategies all these experts are talking about? 

Well… Yes, at three, my son started talking a little; yes, at four, he did finally get potty trained; yes, in kindergarten, and through second grade, my son was mainstreamed with an aide. 

They seem relieved to hear from an older parent who can remember the days they are facing right now, and still appear (mostly) sane. But once they start asking about my son’s current status, I have to tread lightly. 

The question of “How’s your son doing now?” is code for “Are we going to be OK?”

And, if they’re anything like I was, their definition of “OK” involves some level of their kids being “indistinguishable from their peers.” 

My kid is quite distinguishable. 

They may not be ready for this reality check. 

I describe how much progress my son has made. I praise him for how hard he’s worked and is still working. I check off a list of approaches that seemed to help, and a few that haven’t. I skirt around the craters of mental health and social isolation.

I walk that line. I’m not going to tell them to “just love” their kids. But I’m not going to give them the doom and gloom either. 

I smile and say that my son is doing “OK.”

These new parents are not satisfied with my vague responses. They probe for some glimmer of positive they can grab onto. 

It’s that old “Rain Man” dance – what is he good at? What’s his interest? – because there’s got to be something. Right? 

I respond with caveats: 

Well, like any teenager, he’s very motivated by eating and sleeping and being left alone.

No, he’s not going to earn a diploma, but his school is wonderful. 

No, he doesn’t have many words, but he’s still working on it.  

No, he doesn’t have any friends, but his laugh is…

I see the awkward shift in their gazes. Now they are glancing down at their conference programs, looking for presentations that might offer them more hope than what I’m giving.

Of course it stings to see such a negative reflection of my child, how easily he can be seen as not measuring up to some ideal we’ve created. But I’m not surprised by this reaction – wasn’t I in their shoes not so long ago? Hoping my son might have more brag-worthy outcomes? 

I can’t explain to these new parents that their ideas about disability and inclusion will likely change, and their definitions of a safe, happy, and healthy life will broaden.

That someday, time will have rushed forward, and they might find themselves in my seat, making the case that their far-from-typical kid has value, too.

They might even realize — as I am in this moment — that if we say it enough, it really does begin to ring true:

We are doing OK.

As we head back to the afternoon sessions, I give these younger parents genuine assurances that many of these interventions they are hearing about will make a difference and I wish them good luck. 

(I don’t add “you’re going to need it.”) 

One dad shrugs as he shakes my hand and says, “Well, you seem to have a great attitude about it.” 

I laugh. 

“Well, yeah,” I shrug in return. “What else am I going to do?”