Services are working - so they might be taken away

Post Reply New Topic

How Did We Get Services in the First Place?

Typically, it can take years of being on a waitlist to get services. Not for us. We bypassed every waitlist and were instantly given services.

As a very young child, it was clear that our need was extreme. My child was labeled with “severe, classic autism” and “severe intellectual disability.” She also has severe Ehlers Danlos, hypermobile type, so her joints are like rubber. She is very prone to injury, and with her dysregulation, dyspraxia, and frequent meltdowns, she was injuring herself.

My child would still have all those qualifiers, I’m certain, if we didn’t arrange her life the way we have. But now, they will call her “high functioning” and “well adjusted” and hyperlexic.

If It’s Working, Why Would We Lose Services?

Every few months, we are visited by a worker from insurance or a local facilitating agency who re-certify our services.

Yesterday’s Two Meltdowns

Yesterday, my child had two meltdowns. One at the park– well, in the car before going to the park, and one when she got home.

When she came home, she looked like she had two black eyes and her face was red and scratched.

This was from how hard she rubs her face when she’s distressed.

Within one minute, she was having another meltdown. She had been bottling it up until she was in her safe place, the way autistics do, then explode when they get home.

I will not share details of what it was like, but if she had been in a school, she would have been restrained and maybe removed in handcuffs or an ambulance.

Do you know how dangerous restraints are for children? Especially children with connective tissue disorders like Ehlers Danlos?

The autistic son of one of my best friends was killed by his teachers in a restraint. I just collaborated on an expansive report about the devastating reality of restraint and how it impacts autistic kids.

The things she said were things she heard kids say on the playground. She had witnessed bullying and cruelty.

Meltdowns are like seizures. She would never say or do those things if her brain were not experiencing a neurological storm. She couldn’t process her emotions surrounding that.

But those things would not float in a school. In a school, she would have been in trouble for this.

And in a school, those meltdowns would come all the time. She would experience extreme trauma. She would be put into multiple therapies that would make everything worse, she would lose more autonomy, she would feel more “othered,” and the intensity of being “managed” and “modified” would have the opposite impact of helping her regulate.

I’m not afraid of my child’s meltdowns. They happen very rarely now because we usually are able to accommodate to prevent them. She has a lot of strategies to manage herself, but she absolutely has neurological and developmental limits that would make any traditional school setting far too much for her sensory and nervous system to handle.

My child currently has access to attendant care. What this means is that I’m able to hire someone to work with my child.

[...]

She supports my child with her homeschooling, plus arranges lots of playtime with safe, local friends, several who also have neurodivergent children.

Academics are tailored to my child and only require a few hours a day to be far more effective than a traditional classroom. She can’t focus without pacing and moving a lot, which is fine in this setting. She is working way ahead of grade level in every subject.

[...]

As a very young child, it was clear that our need was extreme. My child was labeled with “severe, classic autism” and “severe intellectual disability.” She also has severe Ehlers Danlos, hypermobile type, so her joints are like rubber. She is very prone to injury, and with her dysregulation, dyspraxia, and frequent meltdowns, she was injuring herself.

My child would still have all those qualifiers, I’m certain, if we didn’t arrange her life the way we have. But now, they will call her “high functioning” and “well adjusted” and hyperlexic.

[...]

We are already living as proof of concept of what can be possible when an autistic child lives in a world that works for their needs. Our life is not easy, but her services give me access to the best case scenario with regards to meeting her needs. And mine. And my autistic husband’s.

By every measurement, she is excelling beyond all the doom-and-gloom forecasts that every single expert has anticipated.

That’s because we had what we needed.

[...]

But without those supports, everything in our lives would be catastrophic.

The following leapt out at me:

I had to advocate for people with disabilities to keep their services and budget. It is absolutely correct that if someone is doing well, the funding agencies will try to reduce or terminate services.