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Cumulative

  • Posted on December 5, 2012 at 5:23 PM

Life as a family coping with multiple disabilities and multiple people with disabilities often seems to revolve around the issue of cumulative effects. At least, that’s our experience.

This is true of the big issues, of course. For example, the longer Mark is depressed the harder it seems to be for him to recover from that depression and the harder it becomes for him to imagine a future point in his life when he’s not depressed. The longer Alex goes without an effective means of complex communication, the further behind his peers he gets, and the less likely he is to have anything resembling a “normal” future, which means his projected outcome is “worse than” his brothers’.

But it is also true of the small issues. For example, Ben is still having a rough time at school and we’re still at the “figuring things out” stage, so he’s accumulating stress all week long. So, the at-home strategies that have been in place and have been working are no longer enough to help him cope with the additional stress. In turn, Ben’s lack of coping results in more outbursts, particularly more outbursts targeting Alex. Alex, then, has a rougher time, more stress, and more outbursts of his own. So, Alex takes out his frustrations on others, particularly but not exclusively me. This involves pinching and poking the “trigger points” that are especially painful, which “gets a rise” out of me and makes me hurt and be grumpy. This reduces my self-control, meaning I become more snappish, and this impacts Willy, because he’s especially sensitive to snapping. Meanwhile Mark, who is the steadfast star we all orbit around, seems to get more depressed, because there’s very little he can do about all of it.

Recently, when explaining the spoons/marbles theory to a certain co-author of mine, he added a new dimension by describing it “more like spinning plates.” This shows the cumulative effect, because—after being overextended—you start each day walking on a bunch of broken plates. And I’m definitely (though only figuratively) wading through shards.