Last summer I wrote a post about the constant vigil I feel I must keep when Brooke is out and about in the world. The setting of the post was a local pool where I would sit half listening to the moms who were completely unaware of where their child was or what their child was doing while I would watch my little one weave her way through the seascape. That constant need to watch her was rooted in her autism, knowing that her attempts to interact with other kids or adults would most likely be met with ignorance or, at best, misunderstanding. I would stand vigil so that I could readily jump in to facilitate interaction.
Toward the end of the summer, I began to loosen up a bit. Brooke still had difficulty initiating easy conversation, but her swimming skills had become stronger and quite honestly, her social skills were showing some improvement. I finally was reaching a point where I could look someone in the eye from time to time while having a conversation with them or watch Katie while she performed some kind of diving trick.
I was finally able to take a breath.
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A little over a month ago, Brooke was diagnosed with Atypical Rolandic Epilepsy. Had she been diagnosed with Typical Epilepsy there would have been a clear path to take: anti-convulsive medication. Jess has done an artistic job describing the difference in Brooke’s diagnosis comparing a typical diagnosis to a raging fire and Brooke’s diagnosis to popping embers – her seizures are more like epileptic spikes, not enough to warrant medication, but still there, still burning, still able at some point, in a non-specific future, to develop into an all out blaze.
What is the prescription for Atypical Rolandic Seizures?
Vigilance.
Vigilance?
That means she cannot be near or in water or on any structure unattended because at any point an ember to pop and catch fire. The likelihood of this happening? Slim. This parent’s willingness to take that risk while she swims at the pool or takes tub? None. And I can’t depend on a lifeguard because she could simply seize and sink.
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So much for taking a breath.
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So if you see me at the pool this summer and it seems like I’m ignoring you or only half listening to you, please don’t take offense, but I am.
Run Luau Run 