Capturing Autism

As Brooks continues his struggle to get to the other side of 1st grade, his dad and I are managing a major disappointment: it turns out that ASD Nest is NOT an appropriate school setting for our son.

It clearly used to be, but that was before we knew he would have trouble keeping up academically. The bottom line is that in this standardized-testing-centric Department of Education, there is simply no room for a child who needs to learn at a different pace. And when you couple that with his distraction and anxiety issues, not to mention his expressive impairments, his current school day offers him few learning opportunities and plenty of heartache.

We’re not the least bit angry at the ASD Nest folks—in fact, quite the opposite. We’re grateful to them for making us aware of the issues early on and for continuing to strategize new ways to help him. Thankfully, they have been relentless in this regard.

And we could never be disappointed with Brooks, whose combination of hard work, humor, and happy-go-lucky attitude prompt his dad and me to regularly say to each other: “Isn’t he fantastic?” Whenever we worry about his learning challenges, the antidote is to spend ten minutes with him—it’s so hard to imagine that anyone with his personality and warmth will miss out on much in life.

And yet, we are clearly disappointed, and even angry—there’s no denying that. But at whom? That’s where it gets complicated.

I have to admit that on a gut level, I’m angry at any teacher or therapist who ever told me Brooks was doing well. I’m fully aware of how inappropriate this is—Brooks has had many successes over the years and, of course, all the positive feedback has been legitimate and well-deserved. But I heard a promise in it. In my mind, it was all leading to him outgrowing his autism, or at least learning how to manage it so that he would be indistinguishable from his peers. In truth, no teacher or therapist ever made that promise—I just believed they did. More and more with every victory.

It is only lately, after having had some time for the new reality sink in, that I find myself able to approach this like a grown-up instead of a petulant child running away from the truth. The fact that Brooks is currently too different from typically-developing 1st-graders to stay in their classroom, even WITH the additional ASD Nest supports, is simply a hard pill to swallow. And what if that is still the case in 3rd grade? And 9th grade? And will he be able to go to college?

In a better world, the DOE would offer Brooks an appropriate eduction in his neighborhood school, much like his first year in the “Intensive K” program—a smaller class size, a modified curriculum WITHOUT an overt focus on standardized testing, and the same kind of ASD Nest supports he now receives.

However, I am not naive enough to think this is even a remote possibility given that the DOE has begun to cut back on funding for the ASD Nest program itself! At risk are continued contracts with Hunter College and NYU for necessary teacher training and professional consultation, ASD Nest school funding, and the resources to find new schools so that graduating 2nd, 5th and 8th graders are not abandoned.

And what ever happened to those sweeping special education reforms that were supposed to integrate IEP kids into their local schools? No big surprise that they got delayed since the plan was sorely lacking in any real details that would make its funding and implementation a reality.

In the end, it seems perfectly reasonable to direct our outrage, anger, and disappointment at the DOE. I don’t know if newly-appointed Chancellor Walcott has ever experienced the sting of being told that there was no place for his child at his neighborhood public school, but I sincerely hope that he listens carefully to parents like me. Although you can rationalize it many different ways, it is discrimination, pure and simple.

Not only will Brooks lose out by being displaced from his neighborhood school, his neighborhood school will also lose out: they’ll miss his passion, kindness and humor.

When Brooks comes home from school, he often talks about his classroom Friendship Tree: students earn leaves when they show each other respect and courtesy.

Sadly, there will soon be fewer friendship leaves at our local school.

This post was originally published on Inisdeschools.org.