A duty, nay, a privilege

I have a friend whose baby was born around the same time as D. Back then she didn’t have a car so when I drove into downtown to go to Whole Foods, she would go with me and stock up on the things our neighborhood stores didn’t carry. We got some healthy food and good company, our babies got a car ride and a ride in a cart.

Once on a dark winter afternoon, as we sat in traffic that inched us closer to home, she told me her son, a year older than Lei, had been diagnosed with ADHD.

I wish I remembered exactly what she said about it, but all I remember is the black sky above and the rain hitting the windshield as I sat there thinking, “That sounds just like Lei.” Continue reading

“My implants were like a bridge, but then … poof!”

Lei's words: I felt like I was in a sound-proof bubble.

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

Autistic-like, a.k.a. an odd duck

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

Not just a normal kid who can’t hear

The times I heard it, it jarred me.

“He’s just a normal kid, the only difference is he can’t hear.”

The tattooed, goateed dad watching his two hearing daughters and hard-of-hearing son run around the playground of a sun-drenched School for the Deaf was talking about his two-year-old boy, a little younger than Lei at that time. We were both there for a Preschool Institute for deaf and hard-of-hearing children and their families. I wondered if his easy confidence came from being a more experienced parent.

Or the petite, dark-haired mom of an 11-year-old deaf girl, who I met through the summer day camp for deaf and hard-of-hearing kids. She told me her daughter “was a really calm baby, and she’s still really easygoing. Gets along with everybody. She’s just a normal kid.”

I smiled and nodded. Inside me a voice was saying, “Lei’s not just a normal kid.”

Continue reading