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

Breakthrough on the left

At Lei’s audiology appointment on Tuesday, the audiologist gently asked how we were doing. She listened to Lei about how she has been feeling, and thoughtfully absorbed the suggestions for programming we had come up with in our meeting with the d/hh team at school.

Finally it was time to take the plunge. I handed over the left processor and the audiologist connected it to her computer on one end and to Lei’s head on the other.  Continue reading

Hearing again and saving herself

During Lei’s days off last week, I tried having her wear her right processor again, and surprisingly she was able to hear decently through it. Over the last week the cutting-in-and-out problem seems to have resolved completely. Lei can hear again!

She still talked about being homeschooled, however, and I asked her how she planned to stay in touch with her new friends at school. “I’ll chat with them online,” she breezed.

She had it all worked out. But on Tuesday when Lei, her dad and I met at midday with the school case manager, audiologist and hearing itinerant, Lei did a 180.

“I talked with my two good friends here and they said they wouldn’t be friends with me if I quit going to Madero.” She grinned. “So I’m staying!”

Let’s hear it for positive peer pressure!  Continue reading

Is this a breakdown?

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

“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

Let the tiger out: Validating my daughter’s anger

The tiger in my chest, by Elahe Bos, www.plantlovegrow.com

Last night Lei and I happened upon Elahe Bos’ blog, Plant Love Grow. We were loving the artwork and the creative approaches to social emotional development when we stumbled on The tiger in my chest, a printable story about anger that includes calming exercises to avoid losing control. As we read it, I reflected that we can’t just keep the tiger caged up all the time. So I asked Lei about her anger, and what she wants to do about it.

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

Race, racism and my white, deaf daughter

Lei and I have been talking a lot about the killing of nine African Americans in their church in Charleston, SC, on June 17, institutionalized racism, economic injustice and police brutality.

When she was eight or nine I felt she was mature enough to start learning about these issues that are such a big part of our country’s past and present, so even though it was awkward for me at first, I have tried to be as up front with her as possible about racial inequality.

Deaf or hard-of-hearing children don’t overhear. When someone mutters a racial slur, or when a disturbing story is reported on the radio, they might not make sense of it or even realize anything was said. I’m glad Lei has missed some of the ways that misinformation about race creeps into our brains before we are old enough to really think about what we’re hearing.

But I don’t want her to be uninformed, apathetic or helpless. Continue reading

All the chances I can stand

Lei is out of school even though school isn’t out yet.

On Monday I took her to a very fancy doctor who took an extensive history of Lei’s hives, repeated colds and stomach problems, examined her, and then told me to toughen up and force her to go to school even when she says she feels sick.

As we got into the car, I decided that instead of ruminating on the sting of yet another parenting lecture from a teacher, doctor, nurse or other uninvested stranger, I would just talk to Lei, trying to share my feelings with as much love as possible.

“Lei, when yet a doctor or teacher tells me I should just be tougher with you, that you’re just manipulating me to avoid going to school, it feels pretty humiliating. And I wonder why you feel like you need to do that. Do you know why you work so hard to avoid going to school?”

Continue reading