They were on the schedule again.
I let out a groan. Every time I see them I feel guilty, ashamed.
Please don’t come.
50% of the time they no show and yet I cannot bring myself to fire them as patients like I would with anyone else.
He was almost as big as his mother. He screamed at all hours of the day and night. He ate spoiled garbage. He ate his feces when he soiled himself. He was becoming more violent. He had the vocabulary of a two year old in a ten year old body.
Someone somewhere had labelled him autistic. He had health insurance but with that label no one wanted to help him.
There was something else going on here, though. My gut told me that it was not simply autism.
The neurologists said, “Not my problem! Send him to psychiatry.”
The psychiatrists said, “Autism is not my problem. Send him to MHMR.”
MHMR said, “We cannot see him. Try a developmental specialist…”
The developmental specialists refused to take him because he already had a diagnosis.
Meanwhile, the family was on their third apartment in a year because he could not be controlled. The neighbors always complained.
Who could blame them?
The parents took him to the emergency room at the children’s hospital whenever things got really bad. The ER would send him to the inpatient psych unit. Meds would get tweaked but then none of the psychiatrists would see him as an outpatient. He would be sent home in a few days with no outside support. I struggled to manage his psych meds myself. I was all there was.
The cycle would start again.
At one point his mother was told he needed to be turned over to a state home, that there was no more hope for him, nothing that could be done.
You have to save yourself…
I called every specialist I knew. I begged, pleaded, cajoled, and tried to call in favors. I even yelled at one. The wall never crumbled. They all stood their ground.
And then I gave up.
I gave up trying to help.
You have to save yourself…
But they still kept coming to see me, driving 45 minutes each way to my office.
Then, after a few years of this, he started having seizures.
Finally, the neurologists could no longer turn him away.
I thought about all of this that day as I prepared for his possible visit by again reading through the consult notes from the pediatric neurologist (the one I yelled at), the psychiatrist, the cardiologist, the nephrologist, and finally the geneticist…
He has a chromosomal abnormality.
A duplication. A syndrome. Now, finally, he has help. But it was too late for that family. The father lost his job. His mother cannot work because she has to be taking care of him. The parents separated, then divorced. Now the kiddo and his mother and siblings are all on welfare, Medicaid.
It should not be this hard to get these kids help. I am angry with every one of those doctors who told me no. I hate them for making me feel like I had to give up and I hate them for making this boy and his family suffer for so long.
Mostly, though, I hate myself.
They did end up not showing for the appointment. I can hide my shame a bit longer…