The brave one

Today begins the second week of kindergarten for C, and the first day of his new bus route. He’s an old hand at this: he started riding a school bus at three. But unlike his old bus ride, this route traverses two NYC boroughs and is one hour and forty-five minutes in length.

A neighbor later said, “You guys are so brave to put him on a bus with total strangers for such a long ride. I don't know if I could do that.” I thought of how difficult it can be for C to express his needs or fears; I remembered how the school bus carrying my friend's child went missing for two-and-a-half hours last week; I imagined C sitting on this bus with people he didn't know and couldn't really communicate with, and my blood ran cold again.

As I walked away, I remembered C peering out the window after I put him on the bus, how a small smile crossed his face as he saw me wave at him, and I realized he’s the brave one, not me.

Failing C

2014-04-28-c-repose@2x Our son C has what’s sometimes referred to (non-scientifically) as a "scattered neurology" (high intellect, severe behavior / social deficits), the upshot of which is that it’s incredibly hard to find an appropriate educational setting for him.

So hard, in fact, that the DOE told us they don’t have a spot for him, and have recommended some schools that might. The problem is that some of these schools are up to two hours away, or don't focus on C's particular type of autism.

Add to that the fact that we’ve already been rejected by some schools who say they cannot support C’s unique neurology, and we’ve been feeling pretty down.

Then, one school appeared like an oasis in the desert, a school that could engage C intellectually while helping with his behaviors, a school that created a program focused specifically on children with the same form of autism, a loving school with dedicated staff.

Since C's been in a somewhat inappropriate educational setting for almost two years — one that does’t focus on autism, let alone children with a scattered neurology — it felt like we’d finally had a stroke of luck.

Last Friday the bad news came: we have one week to come up with a huge deposit to secure a spot in this amazing school. This is the kind of deposit that would ruin us financially; given all our past medical and therapy bills, we’re already at the breaking point.

Certainly we can seek reimbursement from the the DOE since they don't have an appropriate spot for C, but that’s risky: we could have our request denied by the DOE and end up owing the entire sum, plus legal fees. In any case, some future arbitration won't help us come up with the required deposit this week.

And now we're scrambling: how do we find a school for our son before September? Do we bankrupt ourselves, cash out our paltry 401K? Do we move someplace (where?) with the hope that they have better public services? Do we put our son into a completely inappropriate educational setting for yet another year?

And so we feel the system has failed our son, yet again. Perhaps more to the point, however: we feel we’ve failed our son...yet again.

And this is a truly awful feeling.

Postscript: people sometimes ask how hard it is to live with autism. My answer: in our particular case, it’s not autism that makes life unbearable, it's the system and support services (insurance, schools, etc.) that do.

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.

Help Find Avonte Oquendo

avonte-billboard@2x For over a week now, Avonte Oquendo has been missing. He's 14, nonverbal, autistic. His family and community are devastated.

Avonte Oquendo wearing the same shirt he was in when he disappeared.

Electronic billboards in NYC show his photo above subway entrances; pleas for commuters to keep an eye out are broadcast over subway PA systems; and groups and individuals have begun posting flyers around the five boroughs.

And yet there's no sign of this handsome boy who walked out of his school October 4th. (No one at the school reported his disappearance for at least an hour.)

I hope Avonte comes home to his family soon.