We were recently denied therapy services under our insurance plan.

It's pretty typical for undiagnosable kids.

Adelaide is rare.

Polymicrogyria, vision deficit, hearing deficit, seizures, missing brain matter. 

She uses a wheelchair. 

She is nonverbal. 

But her diagnosis code is simple.

Developmental Delay. 

It's the umbrella code. 

We are learning to navigate with this catch-all. 

I reached out to several organizations and programs in our area. 

The waiting lists for kids with developmental delay were daunting.

For a couple of years, I have been doing as much at home as possible, while we petition insurance. 

Last week, we came to the end of our fight. 

No speech or occupational therapy services would be granted. 

Physical therapy is possibly running out. 

Since our state prohibits most therapists from working freelance, we have one option left: the special needs preschool near our home. 
 

It's part of the public school system, but still has a waiting list. 

I'd tried to call five times with no answer. 

After physical therapy, I pulled into the parking lot. 

I needed them to see Adelaide. 

She is more than a chart or a code.

The whole picture. 

The whole person. 

I unloaded her wheelchair, strapped her in, and then felt like I was going to vomit. 

Could I really just walk into a school without scheduling a tour or a meeting? 

I could and I did.

We ended up touring the building, signing release forms, and meeting teachers and paraprofessionals. 

I was blunt. 

"We have been denied services under our insurance plan. She should technically be on a waiting list. I have exhausted my at-home options. We are homeschooling, but need her to receive some services at this facility. Since we don't have a voucher system, we want to send her on a couple half days to get what she needs." 

That vomit feeling returned. 

I had been a special education teacher before my children were born.

Before I was even married. 

Being on the other side of that desk was somewhere I never thought I would be. 

I am happy my degree is helping me raise my daughter, but it never occurred to the 18-year-old girl circling 'Special Education' at college orientation that those classes and skills would become daily life with a little girl sharing her middle name and wavy hair and full cheeks. 

But here we were, listening to someone explain a process I had facilitated hundreds of times. 

"I'm glad you brought her in. Developmental Delay just doesn't really fit her at all. We couldn't get a good picture from that."

The visit was exactly what we needed to make Adelaide's needs known. 

Children are so much more than their diagnoses and insurance codes. 

And sometimes you just need to roll your child in and speak for her. 

If a picture's worth a thousand words, I can't even guess how many pages we filled with our little motion picture on a Thursday afternoon.

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