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The Art of Medicine

He slows us down, and that's a good thing

Maurer, Brian T. PA-C

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doi: 10.1097/01.JAA.0000892740.12255.ed
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For the clinician practicing pediatrics in New England, summertime means being inundated with an unrelenting stretch of physical examinations—for camp, for sports, for school, for college. Most kids are healthy; most physical examinations are straightforward. Every once in a while, I see a special needs child, and those visits usually require me to slow down and readjust the speed at which I plow through my daily schedule.

Jason was one such patient. In utero he suffered an intracranial bleed, which left him with residual weakness and spasticity of his right arm and leg as well as a seizure disorder. Jason carries medical diagnoses of spastic hemiplegia, cerebral palsy, intractable seizures, and profound mental retardation. He wears braces on his lower legs, walks with support, and drools excessively. He is always smiling when I see him, and generally cooperates with the physical examination. At age 21 years, Jason still lives with his mother, father, and seven siblings.

Jason's mother is a matter-of-fact woman, who spends her day doing what needs to be done without complaint. When asked, she speaks to me openly about her feelings and frustrations as the parent of a special needs child. But mostly she chooses to address specific problems in the hope of picking my brain for suggestions on how to handle whatever issues arise. Over the years, she has learned that although there is a workaround to many problems, some remain insurmountable. The latter sort she has learned to accept and move on.

Take this latest issue of Jason masturbating in public. “He can't keep his hands away from himself,” she states. “I wonder if you have any suggestions on what we can do.”

Caught off guard, I stammer slightly, buying precious time to gather my thoughts. “What have you tried so far?” I ask.

“Telling him no, that's not appropriate behavior; pulling his hand out of his pants. Nothing works, of course. Someone told me about saltpeter. Do you think that would work?”

I hadn't heard of saltpeter since my days in basic training, when the rumor spread through our company that it was being added to the food at the enlisted men's mess. “Honestly, I'm not certain that saltpeter is commercially available, or that it would act as a deterrent for Jason.”

“Well, I just thought I'd ask. Someone suggested dressing him in one of those tight-fitting outfits that wrestlers wear in competition—the kind with the shoulder straps, like an old-fashioned swimming suit—what do you think about that?”

“It's worth a try. At least it would keep him from getting his hand into his shorts.”

“We'll give it a try. I'll let you know how it goes.”

I ask Jason's mother about his latest visits to the orthopedic surgeon and the neurologist. He had a bunionectomy last year to facilitate his footwear. The neurologist recently increased the dose of his seizure medications in an attempt to reduce the number of his daily convulsions. She still hasn't heard anything on the last blood levels that were drawn 3 weeks ago. “Oh, and they did do an MRI of his head, which showed an ATM—an AVM—in the back of his brain on the left side. They sent us to see a neurosurgeon to find out if it would be worthwhile doing anything about it. I'm still waiting to hear back from him as well.”

“Any plans for the summer?” I ask.

“Jason will be going to two camps—the same two that he's attended for the past several years—which he really likes. One is a day camp; the other is an overnight week-long camp. They know Jason, and he always looks forward to spending some time with them.”

“How about respite for you during the year?”

“Jason's been registered with DMR, and they give us one week of respite care every quarter—something we all look forward to; right, Jason?”

Jason stares up at his mother and continues to grin.

I take a deep breath and make a conscious effort to let the air out slowly. “Have you given any thought to where you'll be with Jason in, say, the next 5 years? 10 years?”

“We have his name on a waiting list for a group home. We've been told that it may take 10 to 15 years for Jason to get in—maybe more.”

“That's a long time,” I muse.

“It is. But Jason is part of our family. His brothers and sisters help out with him quite a bit. Somehow he's brought us closer together. And,” she adds, “he's also taught us to slow down a bit, to take life as it comes.”

I nod my head. Once again, I have learned a valuable lesson from a patient who seemingly has little to offer his family, his society, his healthcare provider—little other than his presence.

In his brokenness, Jason helps to make others whole.

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