Hi, my name is Anonymama, and I have a kid with autism.
I’ll call this child “Lex,” to keep them anonymous. We live in one of the biggest US cities. You could even argue, THE biggest.
Prior to the pandemic, Lex received ABA therapy, along with speech, occupational, and physical therapies. We were lucky to have a full evaluation of Lex’s needs via the local school district — and aforementioned city — and young Lex was thriving. Our therapists rocked. One even mentioned to my spouse and me that we really needed to work extra hard with Lex because Lex could easily regress. We did our best to reiterate what Lex learned with the therapists, from tactics for preventing Lex’s very frequent tantrums to helping him make eye contact.
The change
It truly felt like the battle was never-ending
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.”
Lawsuits in abundance
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.
Where we stand today
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.”
