There are Good People in the System

Some of Savannah's specialists come and go with such frequently that I often don't remember their names or their specialties. But it doesn't matter, really, because these specialists exist in an alternate universe dedicated to doing exams in order to write reports that must be generated to justify inclusion in services that justify paying for specialists. Its like a miniature ecosystem dedicated to siphoning time and resources into a continuous paperwork loop in which everyone benefits but us, the very people the system was originally designed for. 

In the tacky, 80s elevator in the medical office building
Okay, to be fair, we've had some good specialists, but they were the rare individuals that understood that my child's issues don't exist to feed their curiosity for experimentation or make the down payment on that third house. The good specialists listen, don't over-prescribe tests, stay out of my way, and carry out their functions like the mechanics or technicians they are hired to be. They understand that they are contract labor, tasked with performing a job that I am neither qualified nor licensed to do.

The bad specialists think they are the drivers of Savannah's care. When I talk to other parents, they all regret a time when they let a specialist tell them what to do. They usually start the story with, "I didn't know any better at the time..."

Savannah's dentist is NOT part of this cynical loop. He is awesome.

Savannah's dentist sets aside time in his schedule, over his lunch break, specifically for special needs children. The office is quiet. We are unhurried. The staff is prepared and professional.  They ask appropriate questions.  They listen. They know us.  They care.

Yes, that is right.  I said they care. How often to you encounter a doctor's office in which everyone from the receptionist to the assistants to the doctor all know you and your child and really, actually care?

Other parents ask me, "Do you have to sedate Savannah for dental appointments?" (Which is a common practice for children like Savannah who struggle with spastic reflexes, seizures, and oral aversions.)

"Nope. We've never needed it."

"How is that possible?"

"I coach the assistant and hygienist. I show them her quirks and subtle signs and rhythms... and they listen and adapt.  They care enough to take the time to alter how they work to keep Savannah calm and happy."

They talk her through every movement. They show her the tools and move slowly so there are no surprises. They tell her what has been done and how much more they need to do.  They back off when the stimulation gets too intense, let her calm down before continuing.  They suction gently.  They give her time to process.

The Dentist comes in. "Hi, Savannah, let me take a look." He gently examines her teeth and dictates notes.  Savannah watches him.  When he finishes he sits back and pushes his magnifying goggles onto his neck. "She looks great. Keep up what you're doing." He turns to Savannah and says, "You've grown a lot since you started coming here."  He tells me the things we need to watch out for over the next six months.

Dealing with us is tiring; it is uncomfortable, but when the appointment is over, Savannah rewards everyone with one of her amazing smiles that infects everyone in the office.

I thank the staff. The assistant walks me to the door. She says, "We look forward to seeing you again in six months, Savannah." And she means it. 

"Thank you," I say.  And I am grateful to this person who dares to treat my daughter without condescension, without pretense, without prejudice. Even I am touched. I suddenly feel choked and hold back a tear of gratitude.  My cold, hard heart that finds so much of the medical industry parasitic and self-serving melts. There are good people in our lives, and I must always remember that, even when the days are dark and the path is turbulent and this peculiar life fills me with hate and anger.

"There are good people here...remember that."

#specialneeds #disability #MedicalIndustrialComplex #parenting


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