I promised myself I wouldn’t be like them. Those moms with a chip on their shoulder acting like everyone were out to get them- or their kid. I overheard them in the waiting rooms of the therapy offices. I read their stories online.
They had not shared the testing results with their families. I was not about to make those mistakes.
When it came time for my son’s pre-school evaluation, I walked into the county office with a ream of paper.
I had downloaded and printed numerous articles from the PRISMS website. PRISMS is the non-profit organization that helps families like ours.
Families who had children born with Smith-Magenis Syndrome (SMS), like my son Garrett. SMS is so rare that most medical books do not have information about it so I printed articles about SMS behavior issues and the disturbed sleep cycle.
The authors of these articles were the professionals on the PRISMS Professional Advisory Board- researchers, doctors, genetic counselors, therapists.
“I thought you were prepared?” my husband Charlie asked me that evening. “I WAS prepared!” I shot back at him. “I printed all those articles.” I started to cry again.
I was riding the train back and forth between anger and sadness—poor Charlie couldn’t keep up.
“Did you give them the articles?” he asked and patted me on the shoulder. “Of COURSE I gave them the articles!” I shot back again. “They didn’t even LOOK at them.” And I was back to crying.
“Did you tell them that the articles were written by Ann Smith and Ellen Magenis?” I looked up and he raised his hands. “Okay. Okay. You told them. Maybe you just weren’t all that clear about it.”
Yeah, maybe I wasn’t speaking English. Or maybe I gave them the impression that Garrett would no longer have SMS by the time school started in the fall.
Charlie and I agreed that I would call the county office back in the morning. And I would calmly state our case.
“So…let me get this straight!” I shouted into the phone. “If I could PICK UP my house and MOVE IT five hundred yards to the right…this wouldn’t be a problem?”
I was not exactly calm.
“You do admit that’s what you’re telling me?” She wouldn’t admit it. But it was true.
Our house was at the far north end of the village. Three doors down, the bus would pick up the students and take them to school. The bus would do that in the MORNING.
Our house was inside the village line. We had to go to AFTERNOON pre-school because we lived close enough to walk.
Afternoon pre-school began at noon. Garrett’s nap started at 12:30.
“Maybe you could keep Garrett up later at night. Then he would sleep in longer in the morning and not need to nap.”
I pointed to the sleep article written by Ann Smith. The SMITH of SMS clearly stated that there was a “chronic sleep debt” for Garrett that caused “excessive daytime sleepiness.”
“It doesn’t matter what time he goes to bed.” I told the self-appointed doctor. “His body releases melatonin at the wrong times. “He absolutely HAS to go down for a nap at noon.”
“He cannot nap in kindergarten or first grade,” she informed me.
But he did nap in grade school. The teacher had a quiet spot for him to go to, complete with a beanbag chair and blanket.
Even now, in high school, he needs to rest in the afternoon and he sometimes falls asleep. And Garrett attended morning pre-school.
When our geneticist’s letter of medical necessity arrived at the school director’s office, she was suddenly able to find a spot for him in the morning class.
Charlie and I were just so shocked that we had the information, from creditable sources, and the school authorities still would not listen.
I asked my friends if they ever felt judged over Smith-Magenis syndrome. “One time I was in a public place with my daughter and she was having a meltdown.”
Another SMS mom shared her story for this article. “I gently took her by the arm and she kept screaming while she walked out with me.
One of the patrons looked me straight in the eye and yelled, ‘Oh my God! She is abusing her!” That’s almost understandable.
It is something you would expect from strangers because you do not have a chance to tell them about the SMS diagnosis.
(Although PRISMS has compassion cards with SMS information to hand to strangers when you cannot stop in the middle of a meltdown and hold a SMS seminar!)
“Not always.” The same SMS mom replied that even with a diagnosis, some still believe that they know more about our kids.
“My brother and sister-in-law used to tell me all the time that if I would just spank my daughter she would behave. Later they had two children without disabilities and they did not mind their parents any better.
Actually, my daughter with SMS was better behaved. It was such a good feeling.”
Okay. Strangers and uneducated family members do not get the concept of genetically driven behaviors and sleep issues. It’s hard, but I think I can deal with it.
Or, I thought the professionals understood and then I heard this story from another friend:
“Right after my two year old son was diagnosed with SMS we went to have a CT scan. The anesthesiologist asked why we were there.
I told her that he had just been diagnosed with Smith-Magenis syndrome.” “She literally looked right at me and asked if we got that diagnosis off the internet because SHE had never heard of it.
I said, ‘No. We got it from the genetic counselor that has an office two stories above us. Maybe you need to call her if you have any questions about the syndrome.’ What an idiot.”
I have to agree. Strangers, family members, doctors and school officials…they all claim to have more knowledge about our children than we parents do.
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