Persistence is key: NYC families of students with disabilities share stories of their pandemic year

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This article was published on Chalkbeat New York by Jacqueline Neber on May 5, 2021.

This is part of an ongoing collaborative series between Chalkbeat and THE CITY investigating learning differences, special education, and other education challenges in city schools.

Remote learning has proved uniquely challenging for the roughly 200,000 New York City public school students classified with disabilities — many of whom haven’t received all of their mandated support services this school year.

To hear about what was and wasn’t working within New York’s special education system during the pandemic, The CITY and Chalkbeat brought together parents, teachers, and advocates from the special education community for two online sessions earlier this year.

These virtual gatherings were part of The Open Newsroom, an initiative launched by THE CITY to make local news collaborative, better understand New Yorkers’ needs, and create relevant, responsive, and actionable journalism.

Many attendees cited lack of communication from the city’s education department as a major roadblock to their children receiving the right services or being properly supported. While returning to in-person learning could solve some of the problems, community members said many challenges are systemic. We heard that learning pods — small groups often led by educators — could prove beneficial for students with disabilities, but they haven’t been on many families’ radar or have posed other barriers to entry, whether financial or otherwise. And when it comes to getting the information they need, parents often have to take that into their own hands.

After the events, The Open Newsroom talked with two parents of children with disabilities and one student who receives special education services to hear more about how their schools and the city can support them at this critical moment.

Thomas Jordan, 13

Seventh grader at West Preparatory Academy, Manhattan

Thomas has dysgraphia, a learning disability that impacts his ability to write. During in-person learning, he uses a laptop for notetaking and completing assignments, as indicated in his Individualized Education Program, or IEP. He is in an integrated co-teaching classroom, where two teachers — one of whom is trained in special education — serve a mix of students with disabilities and general education students. Remote learning, while socially isolating, has eliminated his most significant struggle, handwriting, from his schoolwork. Working from home, he can fix any mistakes he makes with a stroke of his keyboard.

Thomas attends Zoom classes every day and can ask his teachers for help as soon as he needs it. He can also schedule one-on-one sessions, which he says are helpful. His biggest remote learning challenge? Staying on task.

“There’s a bunch of distractions, like YouTube or playing video games. Sometimes the urge is too much, and you end up playing video games and forgetting a bunch of work,” he said.

Thomas’s advice for other students includes asking for help when needed, trusting that teachers can assist, and embracing the learning style that suits them best.

“I like remote learning a little bit more because usually in person, we’re not able to schedule one-on-one help — or we are, but it’ll be for barely [any time],” Thomas said. “But now since we’re remote, we’re able to have a meeting for a good amount of time independently.”

Kelly Brown

Parent of two students at a District 1 school, Manhattan
Social worker

Kelly Brown’s position as a parent and social worker within the city’s special education system has given her a unique understanding of the services students with disabilities are entitled to, she said. When each of her daughters was diagnosed with dyslexia, Brown educated herself on what services they should receive as part of their respective IEPs, and she knew how to fight for them.

She said the most difficult part of getting her younger daughter the support she needed was communicating with her elementary school, where the girl’s teacher didn’t have experience teaching dyslexic students. “The principal agreed the school doesn’t have the skills to fully teach students who have dyslexia,” Brown said.

Brown wanted to make sure her daughter would receive specific supports at school and knew she needed a trained, certified reading instructor who had experience working with children with dyslexia. That was noted on her younger daughter’s neuropsychological evaluation, which she obtained outside of school to get a clearer sense of her child’s disabilities as well as a deeper understanding of what might help at school.

“I couldn’t get that on her IEP, so I had to open it back up,” said Brown, who asked the school to reevaluate her daughter’s IEP three or four times in the past year and a half, rather than the standard once a year. At each turn, though, the school provided the same special education teacher who lacked experience teaching kids with dyslexia. The teacher attended a two-day training and received mentoring from other teachers at the school, but Brown doesn’t believe that was sufficient.

Brown said the situation was so stressful that she put herself and her older daughter in therapy. Brown acknowledges that her fight is easier than it would be for most parents, given her familiarity with the special education landscape and the time she can devote to advocacy.

“The only progress that my daughter is making is because I’m paying for all this extra stuff for her,” Brown said. “I’m frustrated and angry. I have the wherewithal to fight this hard, but there are many parents out there who don’t know they have to fight as hard, or how to fight, or who to talk to.” Brown noted that the burden might fall disproportionately on lower-income families of color.

Brown offered a few pieces of advice for other parents of children with disabilities. Brown found someone to help advocate for her oldest daughter, and that person could get meetings rolling. She also suggested consulting an education lawyer, many of whom provide pro bono services.

“Don’t give up,” Brown said, acknowledging the toll this work can take. “Find people who will help in the system, and invite them to be part of your child’s team.”

Chancy Marsh IV

Parent of Malcolm, a fourth grader at PS 168, The Bronx
NYC Department of Education professional

Remote learning was “horrible” for Chancy Marsh’s 9-year-old son, Malcolm, who is on the autism spectrum. In virtual physical therapy sessions, the therapist did not show Malcolm her face, instead playing YouTube videos in which characters performed various movements. Malcolm would learn better, Marsh says, if guided by the therapist.

Marsh has been trying to improve Malcolm’s experience, but communicating with the school can be challenging: “That was my question to the school’s administration: What constitutes a proper therapy session? And I never received an answer,” Marsh said.

Information about services and the rights of students with disabilities and their families is supposed to be public. But when parents seek it out, they often receive vague statements, he said, noting that when a parent wants to get involved, the situation becomes “an albatross,” or an ongoing burden.

Marsh added that Malcolm’s school invited him to IEP meetings to discuss Malcolm’s services and progress without giving Marsh a copy of his son’s plan — which is supposed to be provided at parents’ requests — ahead of time.

“In my opinion, if I’m having a meeting, and everyone has information about my son, and I don’t,” Marsh said, “to me, that’s more like an ambush. That’s not a meeting.”

Being unprepared left Marsh without an understanding of Malcolm’s behavior patterns and any new challenges he faced in school. Marsh said that schools need to be more transparent with families, get them the information they need when they need it, and do more to help parents help their children succeed.

While he understands why some parents could hesitate to be outspoken, Marsh offered this advice on getting things done: Persistence is key.

“You are going to hear the word ‘no’ more than you’ve heard in your entire life. But you cannot quit. You cannot quit on yourself or on your child. There is no formula because everyone’s situation is different,” Marsh said. “But you can’t let money or lack of networks make you quit. And hopefully, you’ll come across some people who are going through a similar situation and can give you information. There are people who genuinely care.”

This story has been supported by the Solutions Journalism Network, a nonprofit organization dedicated to rigorous and compelling reporting about responses to social problems.