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

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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

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.

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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

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?”

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Big Group Project update, complete with tears and recriminations

Last Friday when I arrived to pick up Lei at school, I was called into a small room off the office. I found my girl sitting hunched over with the hood of her turquoise sweater pulled up over her head. Big tears dripped off of her chin.

The case manager, an energetic young Dutch woman, and the boy who is in Lei’s Big Group Project group were there, too. I’ll call the boy John. He’s bright and quirky, which I hoped would bode well for the two of them. I sat down next to Lei and put my arm around her while the case manager explained to me what she had already called John’s mother about.

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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.”

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