An autism mom’s open letter to the DOE Office of Special Education Initiatives

First and foremost, thank you for saving my son’s life. I am not being overly dramatic here. My husband and I owe you a debt of gratitude that we will never be able to repay.

Brooks is in the self-contained Intensive Kindergarten program at PS 178 which feeds into the ASD (Autism Spectrum Disorder) Nest program. These pilot programs gave my son the opportunity to start school with compassionate teachers, therapists and principals. They not only understand his comprehensive IEP (Individualized Educational Plan) backwards, forwards and inside out, they collaborate daily to ensure that that IEP works and keeps on working. That is why my son is making steady progress. No, let me rephrase that: that is why my son is thriving.

So with a lump in my throat and great hesitation, I need to ask for more.

I have been in this situation before, when Brooks was 3 years old and still had almost no language. By that age, most children receive speech therapy 2 or 3 days a week, but we knew that Brooks needed to continue his 5-days-a-week regimen. We were told by some that he wouldn’t get those kinds of hours, but my husband and I (and many of Brooks’s therapists) knew he needed that level of support.

When it came time for our assessment, we had piles of documentation — and a posse of articulate, persuasive therapists. Luck smiled: we were assigned an amazing administrator, who understood Brooks’s need for intensive speech — and who looked me in the eye and promised: “He will talk.” At that meeting, I broke down, overwhelmed by gratitude. We knew that Early Intervention had saved Brooks, and we felt selfish that we had to say: “Okay, we know you saved his life, and thanks for doing that, but now we need this and this and this.”

And here I am, again: We know that your department saved Brooks’s life, but now we need this and this and this. And not just for my son, but for thousands of city kids as well.

For every 5-year-old whose IEP is respected, a multitude of others are being more or less ignored. Recent news of yet another DOE reorganization of special education (the third since 2002) is truly disheartening, since according to Advocates for Children (AFC), so many of the recommendations submitted by various advocacy organizations for the first reorganization remain unaddressed. Frankly, it’s hard to imagine that this third go-around will accomplish more than respond to impending budget cuts, particularly since it’s being headed up by a business executive, not an educator (let alone a special educator!).

I listened carefully to the testimony at the Education Committee of the New York City Council hearing last Thursday. A picture quickly emerged of a very broken special education system. I know that easy solutions are few, and that this system was broken long before mayoral control was a fact of law. But I also know that the advocates who spoke that afternoon are in the trenches with these under-served kids and their families every day, and I’m willing to bet they lie awake at night because of them. I urge you to act on their advice.

I am also deeply worried by DOE’s investment in attorneys to fight tuition requests by special-needs families, and what looks like reluctance to develop new sites and programs. Believe me, it’s plenty hard to raise a non-verbal child. And it’s harder still for that child to be denied a lottery spot in the single ABA (Applied Behavior Analysis) public school in New York City, and to then have to bear the burden of a $90,000 private school tuition even when you bring a lawsuit against the DOE to pay it back over a year later. But to lose that lawsuit, or to win it, but have a DOE appeal overturn the verdict, ventures beyond hardship to true punishment. This is not one of those complicated problems that has no easy solution. It seems to me that this is, quite simply, wrong. And we should, quite simply, find a way to stop it.

Your department funds the ASD Nest program. You know how to save these kids and help their families. And they, and we, need you, now more than ever.

Please understand that all I say is grounded in appreciation for all you’ve done for my family, in no way intended as harmful or mean-spirited. My simple plea is that other families gain the benefits our family enjoys — that you find ways to extend your expertise to other families who are truly hurting.

Brooks was pretty much non-verbal until he was 3, and I know what it’s like to ache for the sound of his voice; I used to dream at night about what it might sound like. Thanks in large part to the DOE, I don’t have to do that anymore. And as far as how much my son loves his school, don’t take my word for it. Miraculously, Brooks can tell you himself: