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

The Other Child

When you have a child with special needs that take up a lot of your time and attention, what about the other children?

I only have two children: Lei, my older child, the one with lots of appointments, therapies, quirks and challenges, and my younger child. My more or less neurotypical child, the one whose challenges are more minor. The other child. Continue reading

Bring it on, audiologist

I’m sitting here wondering why I’m so emotional right now. I got mad and stayed mad at D’s five-year-old antics earlier. I’m not usually like that. And now – I wish I was kidding here – I am depressed because the sandwich I ordered tastes bad and I don’t want to return it. Yeah.

Then it hits me, of course I’m emotional: I’m about to take Lei back to the audiologist.  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

Bilateral failure

Back of Lei's head showing two CI headpieces.

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

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