Why I Won't Stop Fighting For My Kid
Educational fairness for all children is a civil rights issue.
For Ian, school was his entire life. He loved sitting at a desk in a traditional classroom with typical students taking tests and chugging through his daily schedule. He loved doing his math homework. He loved getting hot lunch from the cafeteria on Fridays. To agree to take a sick day at home, Ian would have to be projectile vomiting or delusional from fever. That's why, when school ended on March 16, 2020, it was a traumatic event for my son, rather than a happy “snow day.”
His school completely shut down that second week of March, with no access to teachers for a month. After that, remote education was optional for the teachers, so most didn’t show up. Ian did. He logged onto to every scheduled class, hoping that a teacher would show up, but he would be the only person in the zoom room. At most, he had an hour of remote education per week. June 6th was the last day that any teacher bothered to appear in a Zoom room, even though the school year continued until June 22nd.
Ian was so lonely that spring that I paid teachers — during the school day, when they were still contractually obliged to be teaching kids — to talk to him.
Spring stretched into the summer, where he went for another 12 weeks with no human contact. Sure, the town ran basketball camps and other sporting activities for the typical kids, but those options weren't available to my kid. Typical kids also had friends that they could meet up with at playgrounds and basement rec-rooms. Kids with autism don't have friends, so Ian was alone until September.
Ian went for six full months with no human contact outside of our family. People with autism do not learn social skills naturally. They need to emulate peers and learn with direct instruction. Ian had none of that. His development was halted in March 2020.
On top of the trauma of isolation and the end of his beloved school, Ian was diagnosed with epilepsy just before the pandemic and was struggling to adjust to new medication, which was making him extremely ill. He was miserable. I let the school know that Ian was in crisis multiple times through meetings and emails, but I got lots of shrugs and “my hands are tied.”
It didn't end there. The following year was a year of hybrid instruction — some in-person, some remote. But when he went into the school in September, there was no one there. The kids and the teachers preferred to be at home in their pajamas, so Ian would often be the only student in the room, again staring at his teacher on a Zoom class. And this year, the problems continued because his transition program doesn’t have enough job coaches or transportation to get Ian to worksites.
The federal government gave schools money to help kids like Ian recover. Theoretically, Ian should be getting extra academic and social skills classes after school and during the summer. Our district received $2 million dollars. When I asked for some of this help, I was told “no” with some word salad response. The real reason is that our district spent all their money on air filters for classrooms, so there was no money for my son.
The lawyers in our state are trying to inform parents about their rights. (If you reach out here, you can ask to see a recording of one excellent webinar on this topic.) They are explaining that special education students SHOULD be getting lots of extras and remediation right now, and how to advocate for your child to get that help. At one last meeting with teacher and administrators (again, on remote), I gave them a powerpoint presentation on why Ian deserved this help and included dates and details about lost instructional time. They said no. We hired a lawyer.
My son was robbed out of two years of education. I am angry. It’s not good to feel this angry, and I suppose a healthy person would take those feelings, package them up, and get a manicure (a case manager once gave me that handy advice). But I can’t. We would never tell a person of color to “get over” the mistreatment of police, so I can’t just “get over” the fact that schools and society abandoned my family for two years. I believe that educational fairness for all children is a civil rights issue. I tried fighting this fight with logic, a call to compassion, and a deck of powerpoint slides. That didn’t work. So, now I’m using our vacation money to hire legal help.
LINKS
Many Schools Aren’t Made for Kids With Learning Differences. The Pandemic Amplified That.
On the blog: Thoughts on Florida and Aging
“Too many talented autistic adults are being overlooked by employers. That needs to change. We meet some of Zurich Insurance Group’s autistic employees and learn how autism has impacted their lives and careers”
