- My 5-year-old son is entitled to childhood services due to his disabilities.
- Two years ago, he was expelled from the public preschool due to his behavior.
- My husband and I are broke and broken, but we won't stop fighting for our son.
As a child classified 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 the local public preschool in our school district due to his behavior, and none of the public therapeutic programs had space.
Oscar is diagnosed with ADHD and Generalized Anxiety and has features of Pathological Demand Avoidance, meaning that his nervous system triggers a fight or flight reaction to any perceived loss of autonomy. Sometimes Oscar behaves typically. Other times, and seemingly without provocation, Oscar becomes 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 no choice but to enroll him at a private school for children with sensory differences and learning challenges and 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 reminded us they aren't legally allowed to place him at a private school. Only we, his parents, can do that and sue the district for reimbursement, an exhausting and costly process.
A recent article in the New Yorker describes my family's plight. In "The Parents Who Fight the City for a 'Free Appropriate Public Education,'" Jessica Winters reports on how securing our children's constitutional right to a free and appropriate public education is bringing families like mine to a breaking point. According to the article, New York City's public school system has roughly a million students; about 181,000 thousand of them have IEPs, and there are thousands of lawsuits like ours pending at any time. We are the parents New York City schools Chancellor David Banks says are "gaming the system," taking advantage of the law to hustle our child a free private education.
But we aren't gaming anything. Parents of children with special needs are desperate for help.
Somedays, 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, speculating 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, laughed nervously.
I just smiled because he did, actually. 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.
If she could afford it, Natalie tells me, she'd have chosen a Waldorf school for her son, who also has sensory needs.
"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 childrens' behavior but behavior charts monitoring every misdeed and "penguin points" my son never seemed to earn only made him more anxious which, in turn, triggered him to fight or run.
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 assigned him 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 carpeting, and started tearing things down from the walls.
The state government acknowledges a lack of public resources for special needs kids, and so they're willing to pay private institutions to fill the gap in and properly educate them in ways that suit them. In the meantime, in most cases, parents have to foot the bill. To come up with the funds, I've met parents who've liquidated stocks meant for retirement, remortgaged their homes, or borrowed enormous amounts from family members. Then they wait, sometimes for years, for reimbursement.
It's a preposterous system, especially considering that accommodating a special needs child is incredibly expensive. Oscar's tuition, individual accommodations, and therapies total 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 so that we could 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 informed us they could no longer afford to cover his costs. To keep him enrolled, we emptied our bank accounts and maxed out a credit card. We begged and bargained and bartered. 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 that was 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.
Over 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 came back with a second, 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 is 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 he has 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.