… or at least thinking about it.
Those of you who know me and my family know that our son, Jules, was born with a very rare genetic disability (known as 9p deletion syndrome). He’s fine, at least medically, though it was no fun for the first three weeks of his life and has on various occasions been a little less fun than it otherwise might have been (cleft palate surgery, some ongoing concerns, now faded, about his heart). Cognitively, we know less about the future than we might, partly because the syndrome is so rare (maybe 150 cases in the United States), partly because it produces such a wide range of outcomes, and partly because the treatment of the disabled has changed so radically in the United States in the last 60 years that evidence gathered on the basis of a 30-, 40-, or 50-year-old 9p deletion person does you little to no good, since that person lived through a radically different set of approaches to disability than will any child born ten or twenty or thirty years later.
I know less than I should about how disabled people are treated in the United States. More than I used to know, of course, before Jules was born, before he spent 2.5 of his first 3 years in an amazing day care facility, in which he was fully integrated with the other kids (a process known as “mainstreaming,” now the normal thing to do in the United States), and to which state-provided therapists (occupational, physical, speech, developmental) showed up for 7 hours a week to help Jules catch up with his peers.
The idea behind mainstreaming and the therapy (which is known generally as “early intervention”) is simple and twofold: first, that the earlier you can work with disabled (or even potentially disabled) children, the better you can help them reach their maximum genetic potential (I know that’s a fuzzy concept, but let’s use it loosely here to express something like the maximal cognitive capacity someone can reach, all other things being equal); and, second, that surrounding (potentially) disabled children with other children who are developmentally “ahead” of them actually encourages the (potentially) disabled children to rise to the level of their peers. In this mainstreaming takes advantage of two well-established developmental facts: that early and frequent intervention produces better developmental outcomes, and that peer effects are powerful social, physical, and cognitive motivators (for good and ill–just ask someone who chooses to live in a frat house).
So by the summer of 2013 Jules barely qualified to continue in the state-provided program that provided the 7 hours of extra attention per week that he had been getting since he was four months old. He had made amazing progress, and was catching up to his peers on a number of levels that the state measures to determine eligiblity for its programs (gross motor, fine motor, speech, social/psychological maturity, etc.). But we were thrilled that he was qualified because we knew that the more help he got, the better off he’d be in the long run. (None of this stuff means he’ll stay caught up with his peers, which is why this early intervention is so important.)
And then we decided to move to Germany for the academic year.