[It’s a tricky thing keeping a blog about the development of your kid. Often it captures a moment in time, and is not necessarily perfectly written. (To paraphrase Pascal, it takes a lot more time to write a short concise description than a long scattershot blather.)
We have a life with Jon that is its own little world. This blog is trying to explore the realities, struggles and restrictions of life with/for Jon, but given our proximity we sometimes forget the context of the “regular world”.
This post replaces two from a week ago. Not just because of some over-enthusiastic writing about an earthshaking milestone event in our little bubble—hey, it was huge to us—but because events of the past week have changed the nature of even that development. And because of the nature of this sea change—unlike most of the issues discussed in this blog—I owe it to put more time into this one.
So, for posterity (and ignoring the cries of “revisionist” and “George-Lucas-face”, which admittedly was my nickname in junior high)…]
The past week has been a big thing. Many years after the milestones called for it, and countless misfires, lucky attempts and a huge amount of frustration, countless tears and an inability for anyone to be able to get a handle on the nature of the situation, in the space of one week, Jon is suddenly more-or-less toilet-trained.
The term “developmental delay” is a tricky concept. It reflects that when you have impairment in the brain, some functions progress normally, while others are delayed. Since many tasks/concepts require multiple functions, the lack of progress in one stops everything, and that can stack up in a traffic jam. Conversely, if the original block can be gotten around—somehow—later, then things can proceed apace, or catch up, though development may be permanently off-kilter.
It can be something as simple as lack of the sensory connections to, say, the lower end of the GI tract, that most folks have learned to pick up cues from. There are kids in Jon’s school who can’t sense GI issues at all—heck, there’s a whole variety of GI tract devices to aid people who can’t swallow or digest properly (after all, not all of your brain’s functions are conscious). Cerebral palsy is simply brain damage that interferes with the signals between the brain and its connections with the rest of the body, and everybody with CP has different damage.
Jon’s issues are relatively small potatoes, but over the years there’s been a lot of speculation by his doctors and teachers that he’s might be missing contact with some of the neural connections down there, maybe just enough to make learning this very difficult. Or impossible. Or, perhaps, the challenge for Jon is to tune in to a different cue down there. Somehow. It was all up to him.
It came down to the right time, and the right carrot to dangle.
Some time ago Jon found that YouTube featured not just clips from forecasts on the (U.S.) Weather Channel (which Jon has only seen live the two times we were visiting Grandma and Grandpa in Florida), but that people had actually posted old versions of the Local Forecast, Highway Conditions and other such programming from the (Canadian) Weather Network. One of the key details of this— appreciated especially by Jon—is that since they change the graphics and background music every year or two, those old forecasts are classics that are never repeated.
Jon was transfixed. We quickly had to limit his access to it to holidays and P.D. days only, lest we lose our son to hypnosis.
Then a week and a half ago, out of nowhere, Jon proposed it as a carrot for the milestone that had eluded him. I immediately accepted.
Jon thought he had a perfect plan, but I guess he had thought that a milestone that had eluded him for eight or nine year would be a snap to overcome. It wasn’t. It was not a pleasant time to be here. Jon had a great deal of frustration, and this channelled into preteen anger and tantrums. Poor guy, but lemme tell you, for that week and a half, poor us too.
I figured that at some point he would learn that there’s a symbiotic poetry* to this system.
But that took some time.
Then one day after school, Jon not only clicked into the way of the world, but he’s done it daily since, even on weekends with their change in routine. We’ve praised him highly, but after a day or two he played that down, and his excitement has turned into pure practicality (although he has taken to describing his triumph to his art class instructors or strangers on the street—eek! But that will pass). Now that it’s been a week, he seems to think that this is no big thing. In fact, to me he seems to almost think that there is no other way to do it.
I know there are still aspects to work out, and details that probably won’t be as easy as this past week. But all of the sudden this major milestone has zoomed past, as Jon remapped whatever neural paths he had to. He’s not looking back. Now Laura and I must make the same transition in household duties and even in ordering supplies. We’re the ones who are behind, who are caught in ways that were set close to a decade ago.
Probably as close to a best-of-all-worlds solution as you are going to get with a Developmental Delay situation.
symbiotic poetry: the dance between colonic need, and mental will. (f. Peter-ism)
July 6/09
