Thank you, Dr. Wing

When I first began researching autism, I came across the work of Dr. Lorna Wing, a true pioneer in the field of autism research and acceptance. Dr. Wing was a female researcher and psychiatrist at a time when that was a rarity. She was a mom trying to deconstruct her daughter’s elusive condition. She resurfaced the work of Hans Asperger, and renamed "autistic psychopathy" as "Aspergers syndrome" for fear of what the earlier term might connote.

Dr. Wing was an early proponent of the notion that autism doesn't necessarily equal intellectual impairment. And, she was at the forefront in arguing that autism is likely a cluster of underlying conditions with a common core of symptoms, not a singular condition, something many scientists are just now coming to understand.

One could argue she was an early proponent of the notion that autism comes with many gifts, once saying, "I do believe you need autistic traits for real success in science and the arts, and I am fascinated by the behaviors and personalities of musicians and scientists." Sounds a lot like Temple Grandin, I think.

Personally, she was one of the first people I'd heard of who had turned their professional expertise into a lifelong passion in response to a deep need to help their child and others, something I aspire to myself, though on an admittedly much smaller scale.

So it was with sadness that I learned of her recent passing. I am grateful to her and those like her who have set us all in the right direction.

An Incomplete Picture

In a few hours we’ll be meeting with the neuropsychologist who has just completed a weeks long, detailed evaluation of our son, the purpose of which will be to help us (and the DOE) determine the best path forward for his education and, to some extent, his life.

C’s had evaluations in the past, and while there’s often some very nice stuff reported, there’s a lot of stuff that’s very hard to hear...stuff that would fill any parent with anxiety and despair.

And yet, today, as I wait to hear the results of the most extensive evaluation he’s had to date, I'm feeling surprisingly (to me, at least) calm.

I’ve learned that no evaluation paints a complete portrait of my son. No evaluation can capture the amazing, wonderful bits of his personality that will never come out in a controlled setting like a psychological evaluation, but which pop up every few minutes during everyday life.

So, yeah: this evaluation is going to be difficult and gut-wrenching. But there's no way I’ll let it change my opinion of my boy.

Living Underwater

Today was the first of several neuropsychological evaluations C will undergo over the next few weeks as part of our effort to develop an education plan for him. After the session, the neuropsychologist told my wife that C is "fiercely intelligent" but that it's as if he's "living underwater." When I heard this, I thought it was a perfect description of where C is today. It's disheartening because it affirms what we've suspected for a while now: C has regressed. Again.

Last night my wife and I watched videos of C from over a year ago, and it's clear that he's losing ground, not in cognition but in his struggles with focus, attendance, and social reciprocity.

The primary culprit: C is in the wrong school setting. The type of class he's in works for some kids, but not all. C needs more structure and guidance.

So now begins another battle: we'll make our case to the district administrator and hope she agrees that we need to switch schools. We haven't had much luck in the past.

The good news is that both of C's SEITs and the neuropsychologist thinks he's in the wrong type of class. Better yet, even his current school psychologist thinks he's in the wrong type of class, and her school doesn't offer the kind he needs.

But none of that matters when you're staring into the gaping maw of institutional bureaucracy that is the DOE. What's best for your child seems to be of relatively little importance compared to many other factors unrelated to the education of your kid.

Nonetheless, we have no choice but to go to bat for C, regardless of our chances. More gathering of paperwork and filling out of forms; more meetings; more time off work; more frustration and anxiety.

In the meantime, the questions mount: How did we get to this place? Why didn't C's school let us know they couldn't serve our son? Why did we let our fear of being perceived as pushy parents stop us from asking if he was in the right setting earlier? How much time have we lost, and what are the effects associated with that lost time?

How do we pay for any of this? How patient will my employer be? What if his lung disease returns? How is his twin coping? Are there any schools that will help that don't require us suing the school district for reimbursement?

This is what life is like when you're constantly struggling to breathe, struggling to break free, struggling not to be swallowed whole. It's like living underwater.

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