stunted by drugs

On Calvin's first day of eighth grade, his new teacher asked me what short-term and long-term goals I have for Calvin. I rattled off a list from the top of my head:

learn to eat with a spoon (he had begun to when he was two). be (somewhat) potty trained. learn to nod his head for "no" and make a sound and/or pat his thigh for "yes." stand and wait (something Calvin had nearly mastered when his ed tech Mary was his main aide.) sit and watch a video. walk with his arms down at his sides instead of circling them around above his head and in front of his face. stop putting his fingers in his and other people's mouths.

With what I believe were good intentions, his teacher underscored how much kids like Calvin, once they are old enough, can benefit from working a job. I explained to him how, for eight years, I have helped Calvin practice—almost daily—pushing the doorbell at our neighbor Woody's house. The button itself is textured and ivory, its mount is black; it's easy to see. In nearly a decade, Calvin has been able to manage the task little more than a dozen times without my help, most of those times in the past year.

"Calvin is not going to be able to hold a job," I told his teacher, trying to conceal my despair at the notion. I realized then, with the greatest clarity, that the boy we have now is the boy he was twelve years ago and the boy he will likely always be—one whose development, hindered by the lack of white matter in his brain, was further stunted with the advent of seizures and the initiation of anti epileptic drugs at the age of two.

This morning I came across a video I'd posted on You Tube years ago. A kind stranger had commented, "He is adorable." The video, taken in 2010 just before Calvin's sixth birthday and which is in ways excruciating, shows him getting into a stand from a crawling position. Partway through, I mention how he is, "almost as good as he was two years ago," when he was not quite four years old. I also mention his fatigue from having just taken his morning dose of benzodiazepine, clobazam, which years later we spent four years weaning, eventually coming off of it last February.

For some people, epilepsy drugs have a way of stealing one's life. The loss of hard-earned skills as the result of mind-numbing drugs is painful. The list of failed pharmaceutical medications is endless. The heinous side effects from drugs that don't completely control—and sometimes exacerbate—seizures is harrowing. We end up with children we don't recognize and aren't sure we can ever know, with children who might have turned out completely different if not for the relentless brain- and body-pummeling of seizures and drugs.

Having said that, our son is no less adorable or affectionate. It comes as some solace that Calvin doesn't know what he is missing in the world. I cannot imagine he wants for anything but car rides (he didn't used to) and hugs and kisses, breakfast sausage and blueberries, spinning in his jumper and banging the shutters, biting plastic and wood and cloth, getting tickles from me and his dad, and walking down the sidewalk to ring Woody's doorbell, only to sit in Woody's kitchen rocker briefly enough to eat a piece of chocolate before getting up to leave.