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?”

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Look not upon the seed, look upon the tree

When I picked the color for Lei’s first hearing aids, it was a major philosophical decision: hide or flaunt?

Did I want her to blend in or stand out? Did I hope for her to be mistaken for normal? Did I dream for her deafness to go unnoticed or celebrated?

What do you think I chose? Her first hearing aids were bright pink.

Why did I think about it so deeply? My mom.

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Speech and the Language Sundae

Buffy: "Stop new wordage? Never gonna happen."
In addition to being bouncy, our speech therapist Buffy was also into slaying anything that interfered with speech and language development.

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.

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From the archive: Controlled chaos all over my shirt

White pit bull terrier

This is a post from December, 2005, that first appeared on my now-defunct blog, Today in the Life. The funny thing about reading this now is the idea that I had any kind of “control” over the chaos. Em … no. Coco was our white and brindle Staffordshire terrier (a.k.a. pit bull), who died in October, 2014. 

Lei just came into her playroom where I am trying to escape my parental responsibilities and made a sign I couldn’t understand. It wasn’t the sign for HOT, but she sounded like she was saying “hot.” I followed her into the living room.

White pit bull terrier
When Coco came to live with us in October of 2005, she had heartworm and was just not well. She was in the pound, a day away from being euthanized when a rescue group swooped in and delivered her to us. She was a handful, way more than I was ready for, but she got better and mellowed out eventually. We loved her dearly.

I still don’t know what she was trying to convey, but when I got into the living room I saw a big puddle, complete with surrounding splash, of watery dog vomit. I guess it’s time to feed Coco.

Coco hasn’t been fed yet this morning because I have to make her food for her. Yes, boiled ground chuck and instant white rice, because anything else gives her the runs. She eats better than three quarters of the world’s population.

But before I could make her food, I had to wipe up the mess. I grabbed a receiving blanket – our answer to towels of all kinds – and used it to absorb the foamy liquid, then added the blanket to the bag of puked-on stuff from last night. We’re not doing so well when it comes to keeping peristalsis heading downward. Continue reading

From the archives: This I believe

In 2004, my brother emailed me that I should think about submitting an essay to NPR’s then new series, This I Believe. About a year later, near the end of my daughter’s second year of life, this playful reflection is what I wrote. I never did submit it to NPR, just posted it to my long-defunct blog, Today in the Life. Anyway, enjoy!

Someday they really are going to grow up.
Someday they really are going to grow up.

I believe that housework offers its own reward, and those who perform it are bounty hunters.
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