In case pants up/shut lid doesn’t tip you off, this photo is SO posed. Jon would never read the Star’s business section. He’s a WSJ man.
For a parent of a disabled kid, when you first get the news, it is a massive blow. It requires a paradigm shift; the world has changed and all of the priorites get reordered. One of the bigger aspects of this sea change is a completely new view of childhood milestones. First-time parents, with nothing to go on but a raft of horror stories graciously told by their friends (“…and her water broke on national television”) tend to embrace the 3 million books on the subject (well, more correctly from my unofficial polling, Mom-to-be reads them and tells Dad-to-be which ones to look at and they sit on his side table untouched until the kid is thirteen). In these, you are told everything you are to look for from the first minutes on. Modern-day kids are judged with a calendar.
After months of this preparation, it naturally comes as a boot-to-the-head when you find out you won’t be playing by those rules. The milestones are nothing, worse than nothing since all of the other kids will be playing by them. It’s even more fun when you are dealing with developmental delay, a vague term to be sure, which basically can mean that if there’s a break in the chain of developmental events, many things can get held up for a while until that-which-is-behind catches up, or maybe never.
When you recover from the shock, which is not all at once and rarely complete, you realize that the milestones aren’t nothing; they are jewels, all the more precious because they may not come at all. And of course, even when you hit a milestone, it’s not over. That one domino in the developmental delay line has fallen, and other aspects now have to come online, catch up, pick your metaphor. It simply opens up new worlds of learning and new life tasks to master. In many ways, it’s after clearing the hurdle that the hard part begins.
Yes, I’m getting to a point. One specific little roadblock for us has been toilet-training. Jon took an enormous step this summer; since early August he’s been without a diaper overnight, and better yet, very few incidents. Steep learning curve. (Remember steep learning curves are the good ones.)
On Tuesday night as I tucked him in, Jon announced that he didn’t want a diaper on Wednesday. Given his night-time record, I took him seriously, but explained that it was a tad short notice, so I suggested Saturday. I nearly gave his teacher a stroke with the news, since I had forgotten to mention that we’d only do this on weekends for the time being. Sorry, Tami! With Auntie Patti’s help we guessed at an underwear size and on Saturday Jon went without for his first time. Now, yes, there is a certain amount of conditioning from nine years of doing things (in fact, the only way he’s ever known!) but I was surprised at how vigilant he has been. Mind you, as he gets more comfortable, things relax, and a momentary lapse or two can require a change of clothes. And so, the hard work begins–mistakes to be learned from, new routines to build.
But it’s an amazing start, and we’re delighted. And he’s so proud of himself! You can practically see the developmental wheels turning!
Yesterday was a rare night of babysitting (yay Grandma!) so we headed out for a festive evening spent with the improv whizzes at Bad Dog Theatre on the Danforth. There a cast of seven (plus a piano player) improvised loosely through the Dickens story, asking questions of the audience and using their suggestions such as:
(Whoops, it’s been awhile since we’ve transcribed any of Jon’s stories. Here’s a couple. —L)