I love this video of a young deaf woman speaking in her own words about how she feels about being deaf.
Like this family, we opted for both signing and speaking with Lei. It turned out to be a good choice, I think. Lei’s language skills are a good indication that getting language into her brain any way we could was the right strategy. And it’s interesting that the young woman in the video doesn’t view being deaf as a disability, but she would like people to remember that she is deaf and communicate with her appropriately. Continue reading →
I keep wondering if this is what we’ll someday call a breakdown.
Someday maybe we will tell this story by saying that Lei kept having really hard years at school, that we kept trying new things, new interventions, new schools, but we couldn’t seem to find the right fit. And then we’ll talk about how we were so hopeful that attending her dad’s school would give her the security, academic challenges and sense of belonging she lacked. And how, just after she started there, she suffered a breakdown. Continue reading →
Today Lei and I went to the implant center for integrity testing, and although there was a lot to it – some crying, some coffee, a large cookie, a whole bunch of equipment and numerous attempts to reprogram – I’ll just say that it did not go well. Lei will need surgery to replace her implants. Continue reading →
Lei is home with a cold today so I decided to ask her to tell me how it has been for her to have her cochlear implants both fail. She’s a bit more reticent than usual because of her cold – normally she is quite talkative – but these are some of her thoughts on her life over the last ten days.
What was it like when you stopped being able to hear with your cochlear implants?
Things were going great at school. I was making friends and actually becoming kind of popular. Suddenly the implants started fritzing out. Continue reading →
Yesterday the family went out to dinner to celebrate my husband’s birthday. I got a hearty salad and a half-pound of crab legs. I adore them, even if I don’t dip into the lemon butter as heartily as I once did.
Lei wanted to taste the crab meat, but quickly decided it isn’t for her. However she was fascinated by the exoskeleton and collected all the empty legs so she could examine them. She got particularly excited when I showed her the tendons, and explained how they work the same as ours, but they attach onto the external “bone” instead of internal ones like we have.
D quickly joined the fun and the two of them proclaimed themselves marine biologists, an appropriate calling for a girl who still half believes in mermaids. And her brother, of course.
That is Lei at her best. Connected, engaged, communicating, learning, and enjoying herself.
But she’s not always like that. When she is tired or stressed, she retreats into her inner world. She becomes more impulsive and less communicative. This happens enough that the question of whether she has autism has been raised repeatedly. Continue reading →
A playful area rug on the floor, a foot massage with fragrant lotion, a little song performed as though Lei’s toddler feet were microphones: thus began her early speech therapy sessions. Her speech therapist was petite, perky, blond Buffy, a person worthy of sharing a name with the Vampire Slayer. Her approach to speech therapy was to get the child’s nervous system regulated, to give them all the sensory input they needed, to get the muscles of their mouths and faces all working in perfect concert, and only then work on speech. She was (and is) the best.
All this laying of foundation taught me something about speech and language.
You know what happens when your car is making a weird noise and you take it to the mechanic? Right. Nothing. Suddenly everything is smooth as silk and the noise has mysteriously gone away.
Lei has always been like this. No, she’s not a car, but when she was a baby she could have a high fever, or never make eye contact, or emit a horrible high-pitched shriek all day every day, but as soon as we were in the same room with a doctor, she was golden. Bright, alert, looking that doctor straight in the eye, as if to say, “I’m the healthiest, happiest, milestone-hittingest kid in the world, doc.”
And the doctors mostly thought I was extremely neurotic. It was great.