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.