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Friday, March 09, 2007

Game set and Match

A couple of years back, I came away from my son’s IEP meeting with a heavy heart. At that time he was progressing well, had come on leaps and bounds. However it was at about that same time that I learned a new fact. I’m uncertain how this fact had eluded me for so long, but it had. Obvious as it was, I had failed to recognize that no matter how well they did, no matter how much progress they made, when you compared their trajectory of development, it was still at a lower angle than their typically developing peers.

I’d like to blame this on my poor math skills, but that would be a feeble excuse, as even I, visual learner that I am, can see that one line has a steep incline and the one, beneath it, less so. Maybe I needed a pi chart or a superimposed Venn diagramme to make reality pop out for me, but whatever the case, one day, reality did just that, popped out and reminded me that not only was there a gap, but that as they got older, the gap would widen. It was quite sobering at the time.

One of the specific, neatly tailored IEP goals with his Occupational therapist was for her to bounce a ball towards him so that he could catch it, slightly to one side of his body and then the other side. This was designed so that his eyes had longer to track the ball as it came closer, and was off to one side, so that he would need to align his body in advance, amongst other things.

In the first measurement period, he would achieve this two or three times in every five. During the following period, they would hope that he could catch the ball four or five times in every trial and so on. I don’t know why I found this goal, of all the other goals quite so demoralizing. For him it was a tough goal, for every other child in the school it was a ‘no brainer.’ I was dubious about this goal. I had spent many a long hour, coaxing him to come out into the garden where we could ‘play ball.’ ‘Outside’ was loathsome to him, so I soon dropped that bit and we played ‘ball’ in the house. Of course ‘playing ball in the house’ is not what the average civilized parent encourages. Most parents would read their children the riot act if they were discovered occupied in this activity, but no us.

It is hard to describe the feeling that a parent experiences during this activity. You sit on the floor opposite your child, an animated face, cheerful tone and a lot of superfluous activity. You roll or throw the ball at your child. It hits his body or hopefully his hands, but there is no response. His eyes do not ‘track’ the ball, it’s hard to get him to even look at the ball. You keep your words simple, repeat them often, at appropriate intervals, because it takes time for him to process words. This might be o.k. the first couple of times, but sometimes you can do this for minute upon minute, before he simply lies down and rolls away from you with a wordless sigh. You haven’t even managed to ‘engage him.’ His face doesn’t register ‘pain’ as such, mere indifference, possibly boredom.

With most social interactions, there is just that, interaction. Anyone, parent or otherwise playing with a small child, gets the pay off of seeing pleasure in the child, it is self reinforcing. “Just one more time,” is so hard to resist from the gleeful toddler. When however, there is no reaction, it is much harder to sustain the illusion that anyone is playing.

Depending upon your skill set, I think this is where a skilled therapist is the answer. It is not only their unflagging enthusiasm, but their objectivity, that will serve your child well. It is both disheartening and soul destroying if you are the parent. I would like to offer something positive and helpful at this point, but I am at a loss to know what that might be? If the option of the professional is not available to you, I think perhaps you have to change your ‘mind set’ as we Americans say. I’m not sure what exactly that ‘mind set’ is nor what it is called, but it does exist and you can do this too.

There was such a long way to go.

I am in the kitchen at first light, [when am I anywhere else I wonder?] when the boys appear. They are naked from the waist down, clutching pyjama bottoms and pull-ups. Following our group hug when, two small craniums collide with a clunk, I go about calming the walking sqaulking wounded. Junior continues to wail, quite reasonably. I pay heed to the additional lumps forming under his hank of hair, and pay no heed to his older brother who is oblivious to pain. The corner of my eye detects movement. I turn to watch him as he chants, because chanting is easy first thing in the morning, when you have a full compliment of words available to you, if you’re a non-verbal type:


With each word, he throws the pull-up to the ceiling where it makes a puff sound and then catches it, as it falls back down into his two open palms.

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