Summer Time

Summertime is a time to unwind, reset. After the end of another busy school year, it’s a time for vacation, day trips, road trips, or maybe it is simply welcome relief from the usual grind. Summer, with its unstructured days, can also be a time to get wound up. Regardless of your summer plans, no matter how blue the sky or how pleasant the weather, for children with cortical visual impairment (CVI) summer is a time of transition.

Some mornings seem to begin with a near instant meltdown. Triggers are across the board. It might be breakfast (“do I have to eat breakfast every day??”), or brushing hair, or cleaning up – all preferred activities, of course. Or it might be what to play, what clothes to put on, going outside, making choices. Often, the day begins with one question – What are we going to do today, mommy?

With the loss of the reliability of the structured school day – all day long, I know what to expect – coping with unstructured summer time can be hard.

The school day is a routine that has a clear beginning, a clear middle (lunchtime), and a clear end. In between, we use strategies such as schedules (visual or otherwise), calendars, verbal prompts (“five more minutes”), with school bells regularly going off, all day long. If a child with CVI relies on this reliability and structure, how does he ever learn to cope with the concept of unstructured, abstract time?

To remedy this, there is the tendency to create a schedule each day, use timers. This works if your time is still fairly structured – Occupational therapy is at 10 o’clock every day. Or, We go to speech therapy every Wednesday at four. But sometimes it’s more like, We can do that after mommy finishes her work. Or, If the weather is nice, let’s go to the beach. Difficulty arises when time is too abstract, ungraspable, not concrete. Troubles arise when the activity is dependent on some other variable (mommy finishing her work, the weather). Yes, a schedule is reliable – but what do you do when plans are more abstract or suddenly need to change? When that happens, calendars and schedules and timers and verbal prompts are useless in the face of a child having a CVI meltdown because of a lack of structure or a sudden transition.

Most of life’s transitions are unplanned. We do not see them coming. What do you do when the pool is abruptly closed for cleaning on the day you drop by for a swim? (Even though you quadruple checked the pool schedule before suggesting the idea of swimming.) Or when the airplane has a mechanical issue and though you boarded early and are all settled in, you now need to deplane and wait and worse – somehow calmly explain the delay to your child with CVI. We’ll get back on the plane in an hour. Ok, now it’s two hours, no big deal. Eventually it becomes an unbearbale three hour wait. Or on a different flight, again after boarding the plane, a broken seat (yes, a seat) results in a two hour delay and missed connecting flight home due to paperwork (yes, a seat). Or maybe when you and your child both are deliberately sleep deprived in meticulous preparation for an EEG, only to show up for the appointment a full 24 hours early. Or, the car tire that suddenly flats on a busy freeway on your way home from a fun weekend. All of these were real life experiences. Some went Ok. Others I prefer to forget. The flat tire went remarkably well. Deplaning? Not so much. These might seem extreme examples but there are countless every day examples too. The store closed before we got there. School got cancelled. A provider had to reschedule at the last minute. And a thousand more things that you don’t even want to think about.

Or what about those more abstract, impossible to answer timelines, like when your child has an injury? “When will my boo boo better, mommy?” In a couple of days. Maybe tomorrow. By bedtime I bet you won’t even notice it. These answers tend to make the situation worse, not better. Ungraspable.

Then there is all that sound advice about how “kids these days” need more  unstructured time. What does that mean for the kid with CVI who thrives on schedules and structure and reliability, repetition? Where does that leave us? Once again, we are stuck in that grey area.

All year long, we use all these strategies to give our child a sense of anticipation and structure and reliability. Most of the time it works like clockwork. But all of us grown ups know that life is not very tidy, or reliable. How do we prepare our kids who rely on these strategies, for coping with real life, life that is not so predictable? How do they learn to deal with life’s abstraction, and uncertainty?