- My 5-year-old son is entitled to childhood services because of his disabilities.
- Two years ago, he was expelled from our public preschool because of his behavior.
As a child with a disability, our 5-year-old son, Oscar, is legally entitled to early childhood services — and risks falling further behind developmentally without them. But two years ago, Oscar was expelled from our local public preschool in our school district because of his behavior, and none of the public therapeutic programs had space.
Oscar was diagnosed with ADHD, generalized anxiety, and features of pathological demand avoidance, meaning that his nervous system triggers a fight-or-flight reaction to perceived losses of autonomy. Sometimes Oscar behaves typically, but other times, seemingly without provocation, Oscar can become dysregulated, aggressive, and nonverbal.
After months of waiting, our school district still hadn't secured him a spot or offered so much as a single appropriate compensatory service, so we felt that we had no choice but to enroll him at a private school for children with sensory differences and learning challenges. We began a long and costly process of seeking tuition reimbursement from our local public-school district.
At our last individualized educational plan, or IEP, meeting, the representative for the district told us that they weren't legally allowed to place him at a private school. They said that only we, his parents, could do that and that we would have to sue the district for reimbursement, an exhausting and costly process.
A recent article in The New Yorker described my family's plight. Jessica Winters reported in "The Parents Who Fight the City for a 'Free Appropriate Public Education'" that children's constitutional right to a free and appropriate public education is bringing families like mine to breaking point.
According to the article, New York City's public-school system has roughly a million students; about 181,000 of them have IEPs, and there are thousands of lawsuits like ours pending at any time. The New York City schools chancellor, David Banks, said parents were "gaming the system" by taking advantage of the law to hustle our children a free private education.
But we aren't gaming anything. Parents of children with special needs are desperate for help.
Some days, I feel out of place
Some weeks after we enrolled Oscar at his new school, I had dinner with friends. Their kids were at the public preschool our son had been kicked out of. I sat in silence while they complained about the Twix Rice Krispie treats the teachers handed out as a snack and speculated that the company providing the food was the same one that serviced prisons.
"I suppose your son eats quinoa for a snack," my friend Natalie joked.
I smiled because he did. The other days he has millet, porridge, freshly baked bread, and homemade soup. After snack time, Oscar feeds the chickens. At a Waldorf school, academics are delayed until age 7, special needs or not. He and his classmates spend most of their day climbing trees and making art.
Natalie said she would've chosen a Waldorf school for her son, who also has sensory needs, if she could afford it.
"He would thrive at a school like Oscar's," I thought. But he could function in a typical one. The public schools in our community rely on rewards and incentives to manage children's behavior. But the behavior charts monitoring every misdeed and "penguin points" my son never seemed to earn only made him more anxious, which triggered his fight-or-flight response.
Even at an exceptional school, our son struggles
On Oscar's first day at Otto Specht — his new private school — he slapped a fellow 4-year-old. He pulled down his pants and took an enormous poop right then and there. He ran off into the woods and refused to come back.
Oscar is funny, clever, creative, and — we recently learned — exceptionally intelligent. A recent evaluation said he had an IQ of 125, which places him in the 95th percentile. This was without completing the last section of the test, mind you. Before he finished, Oscar ran out of the room, tried to bite the evaluator a few times, dumped a bottle of water onto the carpet, and started tearing things down from the walls.
The state government acknowledges a lack of public resources for kids with special needs, so they're willing to pay private institutions to fill the gap and properly educate them in ways that suit them. In the meantime, parents have to foot the bill in most cases. I've met parents who've liquidated stocks meant for retirement, remortgaged their homes, or borrowed enormous amounts from family members to come up with the funds. Then they wait, sometimes for years, for reimbursement.
It's a preposterous system, especially considering that accommodating a child with special needs is incredibly expensive. Oscar's tuition, individual accommodations, and therapies cost nearly $85,000 a year, not counting additional expenses such as gas and tolls.
When I tell my friends what it costs, I feel the weight of their judgment. Oscar's school is exceptional, but this is what it typically costs to accommodate a child with my son's needs.
To get him initially enrolled, we emptied our savings. We spent $6,000 to retain a lawyer. Another chunk went to lease a car to transport Oscar to and from school. Everything else went toward the tuition. Oscar's school graciously agreed to defer the rest.
Then, about halfway through his second year, the school told us they could no longer afford to cover his costs. We emptied our bank accounts and maxed out a credit card to keep him enrolled. We begged, bargained, and bartered. As a working writer, I applied and was gifted small grants from the Authors League and PEN. We swallowed our pride and started a GoFundMe.
While Oscar learns to get along, I'm fighting for him
After six months at Otto Specht, the district offered Oscar a spot back at our local public elementary school. The room was capped at 15 children, nearly twice the size recommended on Oscar's IEP. Still, I went for a visit. I was impressed by the school's enormous vegetable garden, similar to the one at Oscar's school. I was possibly persuaded the placement might work. Then, I asked the teacher how often they'd gone outside the year before. She told me never — I knew it wouldn't work out.
More than a year since we started the reimbursement process, the district offered us a settlement. Their offer: $50,000 for two school years, not even half of what we still owed. It was maddening. Then, the district returned with a more reasonable offer: $84,000 toward the $104,000 bill.
Somehow, miraculously, we are making it happen. But we can't keep doing this forever.
Still, there are small victories. My son stopped chewing his clothes, a sign his anxiety is abating. He's less oppositional, more cooperative, and more verbal. He seems so much happier and more at ease. In the last couple weeks especially, Oscar's begun expressing a natural desire to conform to a group and sharing positive aspects of his day with me — the songs he's learning, funny exchanges with teachers, meaningful moments with friends. It feels like he's found a place where he fits in.
Whatever it takes, we will keep him there.