It was during one of the 100+ weeks that hit the Midwest in July. Claire is already susceptible to dehydration because of her hydrocephalus. Keeping her cool and overly hydrated is a high priority in the summer. We realized, however, that there is something else that Claire needs to keep it together.
It stores her music, a few shows, and some math and reading apps. During this time of the power outage, not only did her iPad drain, but her password somehow was changed on it and it needed to be reconnected to iTunes and set up again.
Needless to say, Claire was without her iPad for about five days. And she really had trouble. We realized that she needs that input to calm her. Music or TV, using her fingers to type and play games: it has become a sensory necessity for her. Claire needs to be able to turn her brain off for times during the day, shut herself out from her world, and music or a quick show helps. We always have allowed her to watch 20 minutes of TV when she came home from school everyday, in order to decompress from a busy day of school. Apparently a non-busy day requires it too.
Many times over these six days, Claire constantly asked me when the power would come back on. Clearly it was pushing her anxiety to the limits, which pushed her sensory needs to the limits too. She took it out on her brothers by hitting, kicking, or bickering with them. Books, painting, swimming: none of it could take her out of her world.
Thankfully the power has returned and my sweet girl has returned too. Maybe it's time for a generator!
Jennifer Giroux has too many titles to mention, but the most important ones to her are wife, mom, advocate, writer, sister, and friend. She is on the verge of 40 and feeling it--inside and out. She writes about special education issues with her oldest daughter, who has hydrocephalus. Check out her blog at www.afineconundrum.blogspot.com.