Normal things children enjoy seem to be the worst kind of torture to my son.
I don't have much of an option except to shield him from the world, which isn't practical. I spend enough time running the food processor in the bathroom or in the garage, muting the television when there are noises that seem to scare him, and keeping away from extra situations with children that we can avoid without any consequences.
After a police car with its siren blaring whizzed by our property last night, Erik began screaming in agony in his little bed. I ran into his room, turned on the light, and crawled next to him. His tears would stop and his chest would cease heaving eventually, but each time I tried to leave him, he would begin talking of sirens and fire trucks, and the sobbing would begin again. I let him cry himself to sleep, which seemed like it took forever but in reality took only a few minutes. Brian and I went back to watching the season premiere of one of our favorite shows. Eventually there was a commercial featuring the sound of (you guessed it) police cars. I tried to lunge for the remote, but was too late. The screaming began again.
I think his hyperacusis is, if anything, worse, especially as it applies to other children. I would now classify this problem as severe and debilitating. It is now paired with an intense, expressible anxiety that seems to have him in a death grip. While the noises of laboring heavy equipment do not seem to affect him as they once did, being around other children is becoming even more difficult. I am beginning to feel isolated once again. It's hard not to feel like a complete freak show this way.
I consulted my book, Understanding Williams Syndrome, last night as we went to bed. As I cracked it open, I informed Brian that I intended to understand Williams syndrome RIGHT NOW.
We both laughed.
The book was reassuring, although it doesn't solve any of my problems at the moment. Hyperacusis has been studied, and there seem to be absolutely no anomalies of the ears in WS. Therefore, his ear anatomy is likely perfect. Something in his brain scientists have yet to completely understand makes it difficult for him to process noises. The same brain malfunction also renders it easy for him to complete the lyrics to the song "Glamorous" by Fergie out of the blue when I'm singing it preparing dinner. It's a curse and a blessing at the same time. It was also quite clear in the book that this is not a ploy for attention and is undeniably real. Only time will tell if it fades as he grows or remains with him his entire life. It is so severe at this point, I doubt it will ever completely resolve. There were coping techniques listed in the book, but most of them were for slightly older children and adults. What was reassuring to me was that it was obvious we were doing everything correctly. I now feel like it's perfectly acceptable to use what they called "environmental controls," removing upsetting noises like noisy appliances, as we have done for three years. It said absolutely nothing about toughening up a child by exposing him to noise. It's pretty apparent to me that this wouldn't work, anyway. I read about acknowledging a noise, offering reassurance regarding it, and explaining where it comes from. I am doing all of these things, although Erik becomes so upset that I sometimes can't reach him through his agonized yowling. I keep talking, anyway.
We were invited to attend a meeting Saturday night about youth ministries at my church to give us an opportunity to express our dreams for our children. I have sent a letter giving them advance warning I will be asking questions about children with special needs and explained our trouble attending church. I was honest and wrote that I was fresh out of ideas. In the meantime, we will attempt to attend Halloween festivities with Erik's friend Dominick and his family, but I wonder if that will become torture as well. I'm willing to make an attempt, though, in case he enjoys himself. Kathy has already warned us their home is slathered in decorations, some of which make frightening noises, and offered special instructions on how to enter their house in a quiet fashion. While this problem remains tragic and debilitating to our family, I would be lying if I said this didn't make me giggle a little.
Sometimes you just gotta laugh.