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17 Crawling I’ve known for a long time that my family plays hard. There’s no changing that. Still, their exploits have been self-limiting. They have been slapped by the universe enough to figure out when to back off, when to call it a day, and when, maybe, to be a little afraid. The only thing for me that has equaled my kids’ glee over making me quiver with worry was the loud dinnertime retellings of their foibles, follies, and adventures: “We held hands when we were jumping off the cliff into the quarry!” “We were playing hide-n-seek at American Furniture Warehouse!” “The sled was falling apart before we reached the bottom !” “We were winning the shopping cart race at Target before we got kicked out of the store!” “We were jumping the fence at the pool at midnight so we could go swimming naked!” “While we were dancing in the tent, there was a bear lurking outside!” But getting Michael to move with abandon, to act in the progressive tense (you know: verbs that end in -ing), to live like a superhero, and to embrace adventure and a kick in the pants as his guide—so he could also tell his story with aplomb—was not simple. Getting him to crawl was challenge enough. ♦ ♦ ♦ The first few weeks after Michael’s arrival were spent subjecting him to medical tests. They were not invasive by any means, but they 18 ♦ Life with a Superhero were stressful. It is not uncommon for children with Down syndrome to have abnormalities with their hearts, among other body systems. We were relieved when Michael’s echocardiogram was normal. After we made sure he was fully recovered from the respiratory infection he arrived with from Israel, it was recommended that we begin an immediate course of therapeutic intervention. And so we began. By the time Michael was six months old, we had a routine of sorts. Within the course of a week, we would have an occupational therapy appointment, a physical therapy appointment, a speech therapy appointment , and a play therapy appointment. That’s a lot of appointments for a baby, but there were milestones to meet. There were baby books to fill, baby books that—in between the pages illustrated with rocking horses and elephants and filled with lines written in soft cursive, recording an infant’s accomplishments—provided little vignettes that outlined the normal range of ages for children to reach particular landmarks, developmental goals: this is the time you can expect your baby to lift his head, to smile, to coo, to crawl, to babble, to talk, to walk, to run. It’s a very long list. Parents of children who have special needs have been known to burn these books. For them, these celebratory books are a record of all that is not happening, of all that is delayed, of all that might never come to be, instead of a gala’s gold lettered program of accomplishment. I didn’t burn a baby book. Frankly, I am spineless when it comes to fire. This dread of fire has been a constant companion ever since I watched a film in elementary school, when I was six years old, that dramatized various ways fires could begin in a home, and, afterwards, the emotions of the sad people who had a family member die in the ensuing blaze. I now have a fire extinguisher on every floor of my home. Our bathrooms have smoke detectors. I am terrified. And so, I figured that if Michael was going to be slow to crawl, at least it should be in a house that was still standing, rather than one accidentally burned down in a fit of lamentation. Crawling ♦ 19 I was, however, aware of the expected course of development in a child. And, I was not unfamiliar with the sphere of therapy. Nathan had a significant stutter at age five (which is more common than I realized); Sean didn’t talk until he was two (why should he have bothered? He would point at something, and Nathan would talk for him!); and Edie was also delayed in her speech, probably due to a rash of ear infections in her infancy that compromised her hearing. All of their courses of therapy were limited. We went, we did what was recommended, it worked, and we were done. We were lucky. In my anal-retentive mind, there needed to be a linear, overarching path to...


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MARC Record
Launched on MUSE
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