NYC’s planned school for students with dyslexia comes too late for my son

Getting my child the help he needed shouldn’t have been so hard or costly.

First Person is where Chalkbeat features personal essays by educators, students, parents, and others thinking and writing about public education.

I was heartened to hear recently about New York City schools Chancellor David Banks’ plans to open a school specifically for students with dyslexia.  

A new school for kids with reading challenges and other learning disabilities is what many parent advocates have been waiting for. It is highly unlikely, however, that it will be available in time to help those of us who have suffered through an already broken system that has been further hobbled by the COVID crisis.  

Dolores Swirin-Yao (Gabe Palacio)

New York City’s current approach to special education for kids whose needs cannot be met in public schools is an adversarial system based on the false assumption that parents of kids with special needs are trying to take advantage of the system to get private school tuition paid. I do not know one parent whose child is in a private special needs school who would not be overjoyed to have the child in a public school that met the child’s needs.

For many of our kids, that school does not exist.

My son Jeremy, now 17, is a smart, sweet, and funny kid, an aspiring chef with high-normal intelligence and a million-dollar spoken vocabulary who was not recognizing numbers and letters by the end of second grade.

I desperately and, in retrospect, irrationally wanted to keep my son at the progressive public school where he attended from kindergarten through second grade and where my younger son also attended. I had a picture in my mind of giving him a mainstream experience in which he would ride the school bus with his brother every morning through elementary school.

But the earnest and well-meaning teachers and therapists at that school did not seem to think that Jeremy was capable of reading. We knew that he had ADHD, but his language-based learning disabilities were missed. The school did not suggest an outside evaluation or indicate that it might not have the expertise to meet his needs.  

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I tried everything possible to have my child’s needs met in a public school, including supplementing what he received at school with private speech and occupational therapy. I was able to get a paraprofessional for Jeremy on his IEP but learned at the end of the school year that the para assigned to him was absent or late almost every day. 

Jeremy was totally demoralized by the time I recognized that he was not getting what he needed. In an evaluation when he was 7, he answered “I don’t know” to everything, including, “What is a cow?” Later he joked that he wanted to get a pet cow and name it “Steak.” I asked why he had told the evaluator that he did not know what a cow was. He replied that he just did not know what she was asking him. 

Once I let go of my idea that the best school experience for Jeremy was a mainstream one, he was able to get the education that he needed. Because of Jeremy’s academic level, he was offered a spot in what seemed like a cheerful and well-run District 75 school. Yet, the kids there were severely disabled, many of them nonverbal, who were not at all well matched with Jeremy’s capabilities or social skills.

Once I let go of my idea that the best school experience for Jeremy was a mainstream one, he was able to get the education that he needed.

I will forever be grateful that Jeremy was able to get a first placement in a wonderful private specialized school, the Children’s Academy. The reading specialist was an expert in teaching kids with dyslexia. When Jeremy first met her, he told her, “I am sure you are a very good teacher, but I am not going to be able to learn to read.” It was heartbreaking to know that he was so convinced he would not read and yet was so concerned about not hurting the teacher’s feelings. Within a few weeks, he was reading. 

Now, at his current school, the private Aaron School, he is getting As and Bs at modified academic work and is thriving on all levels. He can read young adult books, though he prefers manga like his non-learning-disabled brother. His maturity makes him a natural leader and a good friend. 

There is no doubt that the private, specialized school was the only option that made it possible for Jeremy to learn. Yet the current system for placing students in private specialized schools does not do justice to families, the New York City Department of Education, or the taxpayers.

Enormous resources are being poured into a system that does not work. The education department is paying for a legal department and a dysfunctional, backlogged, and underfunded system of impartial hearing officers tasked with deciding the right place for students. (It’s not clear yet what effect a recent handoff of that system to OATH, the city’s Office of Administrative Trials and Hearings, will have.)  

Families, meanwhile, are required to shell out tens of thousands of dollars of tuition and sign contracts with the schools promising to pay tuition whether or not the education department eventually pays it. This process is repeated every single year. 

The financial impact on families of the current system cannot be overstated. Tuition can be well into the six figures depending on the child’s needs. Tuition for the school year must be fully paid to the school by December, and even when the city has agreed that there is not an appropriate public school option, parents do not see a dime of reimbursement for months and do not see the full refund until at least the following July. Sometimes, full reimbursement takes until the following fall, when another year’s tuition is already due. In the last two years, these processes were further delayed by COVID.

At one point, my family was out a whopping $125,000 waiting for reimbursements. Carrying that much debt has impacted every aspect of my financial life, making it more difficult to buy a house and decimating my retirement savings.  

The system is also skewed to serve people with privilege. My son is Black, and I am white, and I am aware of using my white privilege to advocate for him. We are not wealthy, but I am educated, have access to credit, speak English as a first language, have legal citizenship, and have a job with enough flexibility to make a call during business hours or take personal leave time to go to a hearing. This makes the opportunity to be in a specialized school virtually inaccessible to many less privileged families whose kids do not get what they need and can develop behavior issues when frustrated or bored, feeding the school-to-prison pipeline.

The current system needs to be completely dismantled and replaced by a collaborative one. Once a child’s needs have been established, and until the city can open schools that meet those needs, tuition should be paid directly to the specialized schools without an annual legal fight.  

Families would be free of the financial pressure and anxiety caused by having to pay tuition in advance. The education department, which I know ultimately cares about providing an appropriate education to children, can focus its resources on doing just that. And New York City’s taxpayers will be paying to educate the next generation of citizens rather than sustain an overwhelmed impartial hearing officer system (or its successor) and an army of lawyers. 

The ideal outcome is for public schools to better serve students with learning disabilities in the first place. Chancellor Banks, please also consider reimagining the current system for students while you create schools that will meet future needs. 

Dolores Swirin-Yao is the mother of two teenagers living in East Flatbush, Brooklyn. She has worked in the nonprofit sector for more than 35 years.