CVI early bird

EF8A311F-C4DB-4762-9326-9B9F79BA7807“Hi, how long is open swim today?”

“Until three… pool’s empty right now.”

“EMPTY??” We’ll be right. There.

It was Memorial Day and it made sense that most people were out of town or out at the beach or out at a barbecue instead of at the local Y.  The prospect of having an entire, not quite Olympic sized pool all to ourselves, me and my son who has cortical visual impairment (CVI), was almost too good to be true.

On warm, sunny weekends, when everybody else heads to the crowded beaches, we head to the indoor pool.

Going anywhere with your child with CVI involves planning, anticipation,  preparation, forethought, more anticipation and maybe even an escape route. From a visual perspective, a pool seems like a pretty low complexity environment. But throw in kids of all ages, grown ups, swimming, splashing, talking, yelling as the sounds ricochet off water, concrete and tile and it quickly becomes a sensory nightmare. By the time we arrived, there were maybe two other people in the pool, barely a ripple on the surface of the pale blue water. How often are we afforded such solitude?

In fact the entire holiday weekend had gone that way. Most of the time it goes that way: arranging our lives so as to avoid complexity (Roman). Visual complexity, complexity of array, sensory complexity. Usually that means arriving early. Going early  is one of few things you can attempt to control while navigating life with your child with CVI.

Food shopping, museums, zoos. Early is always a priority. Fewer people, less movement, less sound, less chaos, less meltdown. A chance to check out the lay of the land, settle in. Of course, when you make going early the rule or at least the goal, it is usually accompanied by the self imposed concept and stress of running late.

Then there are things like haircuts, hiking, beaches, parties, swim lessons. Early might not necessarily cut it. Scheduling a haircut, scheduling anything: “What are your quieter times, when is it less busy, could we come in then?” We seek out those off peak times. This is why you are unlikely to spot us at the beach on a Saturday in July. And more likely to find us there on a random grey afternoon in January. It might even be raining.

No – going early or at off peak times does nothing to help us build and practice strategies for dealing with complex sensory environments, for dealing with the real world. Sometimes, come the weekend, after all of the What do you see? What does it have? Use both hands together. Use your helper hand. Make a cup with your hand to catch the vitamin. What can we do when we see a dog. Take a deep breath. and so on and so forth, you just need something easy. Going early can be a life saver

The weekend also included a birthday party. Not just any birthday party – but the birthday party of a young friend with CVI. How often do you get to go places where everybody understands your child with CVI? The invitation had described the party as a small gathering. Double checking the invitation again – date, time, location – the guest list now numbered seventeen people. Seventeen people?? Thinking of my son’s complexity of array (Roman) maximum of six to eight objects, seventeen sounded like a crowd. Worry set in.

We’ll get there early. We’ll stay a while and then if we need to leave early, it won’t be so bad. That plan backfired and we ended up running late. And so did everybody else. By the time we arrived, we were still only the second guests. The house and yard were empty and quiet and easy to explore, perfect. My son fulfilled his typical routine by asking for the bathroom; perhaps his way of orienting to a new space. When we said goodbye nearly three hours later, it was a full house and the signs of sensory overload in my son were subtle but familiar. Time to go.

Tomorrow’s agenda includes a much needed trip to Ikea. Guess who will be waiting at the doors when they open?


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