Managing Editor's Note: In light of Jett Travolta's death and the seizure suffered by Senator Ted Kennedy during the inaugural luncheon, this post represents a real fear held by every parent of a child with seizures.
By Kent Heckenlively, Esq.
His name was Kevin* (pseudonym) and he was one of my students.
He came to my school in October of last year but before he arrived we had a full staff meeting about him. He had severe seizures and we were instructed that if he had a seizure in our class we should immediately check the clock, and if they persisted for more than 3 minutes we should call 911.
Kevin was big for his age, and whether from the seizures, or his medication, often walked like a drunken sailor. His aide sometimes had a belt attached to him in case he started to fall. In my science class they put him at a far table, and he often colored while the other children engaged in activities.
But I move around a fair amount in my classes and I always made sure to connect with him. For better or worse, I consider myself a Son-Rise person when it comes to interacting with people who have autism. That means we think of ourselves as ambassadors of the human race and try to make our world look so inviting that they will want to join it.
And it worked with him. I always got a smile when I came over to ask him a question, or show him something really cool, and when he'd see me around school he'd smile, point to me and say, "I know you!" It was kind of the code in which we talked. "I know you, too!" I'd reply.
When you're a teacher, but especially when you're a teacher who sees a lot of students as I do, you often only get the barest glimpse of their lives. I knew Kevin's father was a doctor, and I'd heard both positive and negative things about him. I was told he had an on-line newsletter and when I looked at it saw he was one of those questing physicians who considered bio-medical approaches. I felt Kevin was in good hands.
I ran into Kevin and his father at the local organic grocery store one day and approached the two of them. His father was a tall man in his early fifties, streaks of grey in his hair, with the broad shoulders of an NFL linebacker. I saw that look in his father's eye, the look of a parent with a disabled child for whom the approach of another person is rarely good news. It was a look which broadcast that if I said anything out of line he could break me like a twig. "Hello," I said cheerfully.
But before I could say another word, Kevin smiled, pointed at me and said, "I know you. You're my science teacher." I replied, "And you're my science student." I spoke with Kevin's father for a few moments, told him I understood a great deal of what he was going through because of my own child, and shared with him a couple web-sites and books.
Kevin left before the end of the school year and I was told he'd been put in an institution. His aide was critical of the decision, but also knew it wasn't working out for him at school.
Last Tuesday Kevin's aide came up to tell me he had died. I only had about a moment to get information as we were at the end of the fire drill. I probably only interacted with Kevin for not more than a total of 20 hours, but felt like I'd lost a member of my extended family.
When I told my wife about it, she replied, "That's why we fight like we do. It's the only chance our daughter has." And I know that's true, but there are times when the overwhelming odds we face come home to me. I know Kevin's father probably fought the good fight, but he still lost.
At times like this I fall back on my faith, believing in a better world beyond, but also wondering why sometimes this one is so damned crappy. I know when I die I'll face my Maker and He/She will ask me many questions about what I did with my life. I freely confess I won't have great answers for some of them. But I'll have a few questions as well.
Kevin will be one of them.
Kent Heckenlively is Legal Editor for Age of Autism.
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