First, the good stuff. We just got back yesterday from a week in Hunter, NY, visiting some of Neil's family. Ben was in peak form, showing off all of his vocal abilities for the very appreciative crowd.
When we were in Wisconsin, my mother gave him a huge pile of books left over from her teaching days (including the fantastic "If You Give a X a Y" series, e.g. "If You Give a Mouse a Cookie" -- Ben loves those). One of his favorites is a big book of Mother Goose nursery rhymes. He now has a bunch of them memorized. The one that gets the most air time runs as follows:
Father and Mother and Uncle John
Went to market one by one.
Father fell off, and Mother fell off,
But Uncle John went on and on.
Seriously, he won't stop saying this one. Impressive, adorable, and hilarious the first 2500 times, but I confess that it's finally losing its novelty. At some point one of his adoring fans changed it up a little, something like "Grandma and Grandpa and Uncle Stan went to market etc." Ben immediately took up that challenge, and has since composed many variations on the theme. Another favorite is this one:
Bat, bat, come under my hat,
I'll feed you a slice of bacon.
And if I bake I'll give you some cake
If I'm not mistaken.
He also offers up snatches of others when his mind is wandering. I was getting him out of the carseat at the grocery store today when he announced, "What a good boy am I!"
Now, the not so good. We went to a joint birthday party for two of Ben's friends today. The kiddy pool was filled, the sprinkler was going, it was toddler heaven. Ben has been swimming a few times already, and loves it. Of course, all the hearing equipment has to come off, and it never goes anywhere near the water. When it's just us and him, no problem -- we explain everything in advance, and we communicate pretty well even with the equipment off. But it was a little trickier today. The other kids could do some sprinkler time, then run off for food, play with toys, and come back to the sprinkler, with no transition. But you can't just slap thousands of dollars worth of hearing equipment on a dripping wet kid. You have to dry him off completely, change out of the wet swimsuit and swim diaper, put on regular clothes, put on the harness, insert the hearing aid, and power everything up. Which means you kind've commit to no more swimming for that day. Never mind the fact that this takes a good ten minutes indoors while the other kids are out frolicking in the yard, impatiently waiting on Ben before they can sing Happy Birthday and have cake.
And I have to admit that I felt a little bad about this. A little jealous, maybe. I was also concerned about the future. Ben seemed to have a pretty good time at the party, but he was very withdrawn and spent the entire time by himself or with us. Part of that may be his personality. But even the most gregarious toddler would have a hard time interacting with peers while he can't hear. Because of the circumstances, he was more clearly marked as Different. These are kids he sees at least once a week at playgroup, and they are used to him with his equipment -- they don't pay any attention to it. But today, he couldn't hear them, and this was suddenly confusing and disturbing; there were a few concerned looks and whispers. Is this how it's going to go? Will he learn to interact more as he gets older, or will he continue to withdraw into himself when the going gets rough?
I realize that part of why something like this hits me this way is that, frankly, we're spoiled. We've been very fortunate. He does so well with the CI that under almost all circumstances, he looks, acts, and talks just like a hearing kid (albeit with some strange objects clinging to his head). It's pretty rare that we really feel the weight of his deafness.
A feedback from a deperate parent
2 weeks ago