As a Special Needs Mom During the Pandemic, I Saw Just How Much No One Else Cared

See, kids like Lex can thrive with something — such as reciting the alphabet — amazingly for one week straight, but then forget the whole thing one week later. Lex thrived on routines and schedules, and every day was a new therapy session. I was so grateful. Lex adored the therapists and greeted them with hugs and smooches. Life was good in 2019. I even stopped wondering who the heck I pissed off that God punished me by giving me special needs kids. (Special needs parents, you get where I’m coming from with that frequent but fleeting thought.)

Lex received therapies both at home and at a local center for kids with disabilities. Then the pandemic hit, and one of Lex’s main therapists immediately quit in-person and switched to remote learning. I promised I understood — no one knew what the heck was happening with COVID-19 in March 2020.

I plopped Lex in front of a laptop for online therapy with this behavioral therapist. As soon as the therapist appeared on screen, Lex threw my laptop at me and almost broke my nose. Lex was confused and upset. Oh boy. We tried again the next day — Lex rolled across the floor of the den sobbing, flapping their hands, and tugging at their hair. This went on for months.

In mid-March, the mayor sent out a memo saying NO pediatric therapists were allowed to see kids with special needs. I wish I was joking, but this happened. Not in a school, not in a center, not at home — they wanted to protect the therapists and the kids. I get it, but for special needs kids, this was NOT good. Even worse, the neighboring state to ours considered these therapists essential workers. I hated knowing friends in the state “next door” continued on like business as usual — their kids’ therapists just needed to wear masks. Mine were yanked away from my kid who depended on them.

Consequently, all four of Lex’s therapists moved to remote learning. Lex regressed immediately, hated screen time, sobbed for the therapists, and experienced major sleep regressions. I had to quit my part-time job to oversee all of Lex’s online sessions. To be clear, I do not have any formal training in any capacity as a special needs therapist. Plus, I was homeschooling another child remotely since every local school was only doing remote learning.

In the end, I ended up joining over 500 other special needs families in a major lawsuit and we sued our city. Only two congresspeople from our city fought for special needs education in 2020. One Democrat, one Republican. One was nice enough to do a Zoom session with special needs parents to hear our concerns. These congresspeople put some pressure on the mayor and governor, and six months later special needs educators were allowed back in homes and centers. Lex was so happy to be reunited with the two that returned.

Lex’s therapists were only back for one week when the city said my block — yes, my BLOCK — was in a “red zone” and removed all therapists from homes. I couldn’t bring my child to the special needs center, because the city shut it down and also declared a “red zone.” What?!

Residents asked for COVID stats and metrics on this “red zone” — the news was conflicting. There was no specific info on what made these streets “red zones.” They claimed high levels of the virus but refused to release any numbers at all. Parents in special needs groups were livid.

It was back to remote learning, which I call un-learning. I was pissed off that I had to quit my job — because we really needed the money  — to be a speech therapist, OT, PT, and ABA therapist for Lex. I was an all-out monster in 2020 because my child was regressing like crazy, I was stressed to the max, and no one seemed to care about anything but COVID-19. The mayor, governor, and school chancellors all said nothing about kids with special needs or IEPs, and parents like me were starting to feel like our city couldn’t care less about people like us.

We went to the press, and a few local outlets covered our concerns, but no major media. They snoozed on this subject. Special needs kids just don’t “sell.”

Well, our next 500-plus family lawsuit worked again. If I’m honest, I was kind of thrilled to sue our city’s Department of Education and felt that it deserved this special needs lawsuit.

Finally, around October 2020, therapists were allowed to see kids in-person once again — masked of course — and the same two came back in-person for Lex. We also paid someone out-of-pocket to help Lex — someone I found online after emailing eight local speech language pathologists. One only agreed to come when I showed them pictures of my clean home and put in writing that we COVID-test often and wear masks.

It feelsl ike this is going to be my future: putting COVID vows in writing with therapists.

I’m not at all negating therapists who stayed all-remote — I sent Lex’s kind “thank you’” emails. But that type of therapy just wasn’t working for Lex, so we didn’t continue with it because it was pointless. It may work for older kids, but not mine.

Today, one year later, Lex has three new in-person therapists. They’re young, eager, and willing to see Lex in-person at our former special needs center.

So far, in 2021, Lex is still very much behind developmentally (according to our previous evaluators)), due to doing eight months of remote therapy, but otherwise doing OK. I hope. I look for the rainbows. I try to focus on the positive.

We are moving this summer to a state that’s more “open,” in the hopes that our other child, who truly misses in-person school, can return to the classroom daily. We hope that in a new city Lex will thrive, have more in-person therapy hours, and we don’t have to sue the city with tons of other IEP parents to get our autistic child help. I sincerely hope I don’t have to go weeks on end watching my child regress and feel my heart shatter, and watch the higher-ups blow off reporter’s logical questions about kids with IEPs.

Maybe in another state, Lex will be considered as “essential.”