Who Knew Starting Pre-School Would Be Easier Than Starting a Day Program?

When Rhia was 3 and began pre-school, she happily took her teacher’s hand and waved to me. “Bye Mama!” She then turned away and tottered off to her new class. I was stunned. Where were the tears? The clinging, wailing, begging me not to go? Everyone had prepared me to be strong and walk away from my crying child. Instead, I was the one crying as I waved. “Bye-bye Baby.”

Fast forward 21 years. We are standing in the library, meeting the aids and participants of her new day program. For 8 months I have been fighting to get her into a program and at last we are here! I’m excited for her to meeting new people and begin her new life in our new city. Rhia on the other hand…

“I don’t want to be here!” Her cry echoes off the library shelves. Everyone in the once quiet building stares at us.

“But sweetie, this is where you’ll make new friends.”

“No!”

“We talked about this. You’re starting a new program so you’re not stuck in the house all day.”

“I like being home.”

“I know, but you can’t stay home anymore. I have to work…”

“Then I’ll go to work with you.”

“You can’t come every day…”

“Why? I like it there.”

“Rhia, it’s okay to come to my work sometimes, but not all the time.”

“Well I’m not gonna come here.” She hunches her shoulders and looks down, essentially blocking out any further discussion. Arguing with a deaf-girl can be annoying.

I wait… and wait… and wait… then I bend down until she can see me and sign, “Please give it a try.”

Rhia looks up at me and bursts into tear. “But no one knows my language! I can’t understand anybody!”

That is the whole problem in a nutshell, and is why it’s taken 8 months to find any program at all. No one knows American Sign Language. Rhia uses her voice to speak, but needs ASL to understand what people say to her. She is deaf, but there are no programs that provide interpreters. This new program is willing to learn ASL as fast as possible and provide whatever support they can to help Rhia understand, everything from pictures to icons to visual schedules. They are going beyond their limits to create something for her, while recognizing that communication won’t be a quick fix. I bought a new iPad with a communication program all set up for her to use. And I’ve come with her to train staff and provide emotional support to help Rhia with this transition.

But I go back to work next week. It’s time for Rhia to start her program. There’s nothing more I can do. I can only imaging how terrifying it must be to spend your day with strangers who don’t know your language and you can’t understand what is happening. When I leave her at her program on my first day back to work, I suspect we’ll both be crying.

I’ll keep looking for a better fit. In the mean time, this is the best we can do, and I feel guilty as hell.

Dear Universe, please help Rhia

Dear Universe,

Please give Rhia a break. She is stressed and sad and no matter how much I try I am unable to do anything about it.

In just the last 5 days we have run into numerous obstacles. Last Friday, she met her new neurologist. Or so we thought. Instead we talked with a person who probably isn’t the correct type of neurologist for what Rhia needs (who knew there were so many kinds of neurologists?). The doctor was kind, but not the right one. She refilled medication that was lost during the MediCal transfer to this county and made several referrals to other specialists. She was helpful yes… but I was really hoping to get Rhia set up in the adult system.

The next day I went to the pharmacy to get Rhia’s medication and learned that MediCal denied it. This medication can help her body maintain body temperature, something especially important in the summer. But it’s expensive so MediCal is refusing to pay. The pharmacy and doctor are trying to solve the problem and I may need to begin the appeal process. Sorry Rhia, here’s another cold pack.

Then on Tuesday I got a call from the Undiagnosed Disease Network (U.D.N.) to discuss their findings. Both Rhia and I had our entire Genome mapped, a process that looks at every genetic code and variable we have in our bodies. And guess what… they found nothing. Not a single anomaly. Genetically everything looks fine. They still need a genetic sample from her biological dad to compare with Rhia’s, but right now, they can’t figure out what is causing Rhia’s disorder. The U.D.N. is the biggest research organization in the entire world specializing in rare and undiagnosed diseases and they can’t find the cause of Rhia’s degenerative condition. If they can’t figure it out, who can?

Thursday was when she started her new program… well, she was supposed to have started. But when we arrived in the morning we learned that the authorization wasn’t finalized. We had a start date and a green light from her social worker, but the program couldn’t let her start without authorization. Rhia has been crying and angry about starting a program for two weeks! She finally agreed to try it… but now… I doubt I’ll get her to try it again.

Universe, Rhia has had one challenge after another since she moved here in October. First her Social Security was cut, then her MediCal delayed. She’s been on waiting lists for programs. She has now “almost” started two. The first start was due to no communication support and the next one due to a paperwork problem. She is stressed, frustrated and lonely. She needs community and something to do. She is trying so hard to grow up and all she gets is slammed doors in her face. Please dear Universe, if you could just give her a tiny break. Something’s gotta give here, and it can’t be Rhia’s mental health. Or mine.

Signed,

Super angry-frustrated-exhausted-sad Mama Bear.