Electronic devices like Alexa and Siri don't speak Max. In our house, Ben has taken on the role of being Max's speaker whisperer. Most commonly, you'll hear Ben say: "Alexa! What's the weather in Los Angeles for the next week?" which delights his California-loving brother every single time.
Max recently had a communication breakthrough, and we have the excessive amount of screen time my children have been consuming to thank for it! OK, not really, but I'm trying to make myself feel better. It turns out that you can speak into the remote control for our Samsung TV to change channels, something I never knew but evidently everyone else in my family did. And it turns out that when Max says "Netflix!" into the remote, it does his bidding. This is pretty cool. Consonants are challenging for him to articulate, and the fact that the device can discern the "n" or "t" or "f" or "x" is exciting. Even more thrilling is that a few consonants are becoming a little easier for him to say.
One thing I could have never imagined when Max was little is that the progress would not stop. The words "developmental delays" seem inherently hopeful—hey, it's just a delay! It's often a word parents cling to when they don't want to face the fact that their child has a disability. But the truth is, "developmental delays" is all about the end goals of typical developmental milestones—ones our children may never reach. It touches on our deepest anxieties about them. It gives us false hope. The best thing we can do, as parents, is to try so hard not to obsess over milestones, focus on the inchstones and help our children max out their unique potential.
That is hard. Really, really hard. In the early years of raising Max, I ached to get to that developmental finish line—I wanted him to crawl, walk, talk, read, do All The Things. And he has achieved so much in his lifetime, despite the gloomy predictions of doctors in the NICU. Speech has been the most slow-coming, due to the parts of his brain where the stroke struck. I was told, years ago by a speech therapist at Max's old school, that she wanted to focus solely on technological communication because she didn't see his speech progressing. I knew that wasn't true—and that Max still had plenty of potential. Now in his seventeenth year and my seventeenth years as a mom, it's acutely clear that Max's speech and powers of communication continue to progress. That will likely never stop.
Forget you, "developmental delays." I'd say "Evolving child" is more like it. Or "child in progress" or "person in progress." Aren't we all?
In other exciting communication news, I got an email from Max's current school speech therapist last week saying how proud she was of him. He'd been telling his class something during a Zoom session, and when nobody understood what he was saying he figured out how to use Zoom chat on his own.
I emailed back to ask what he'd been telling them.
"He told us that it was 93 degrees in L.A," she responded.
I laughed when I read it, but really, I was amazed.
This is very true. Last night I realised just how far my daughter had come. A kind physical therapist once told me “do not worry about her gross motor delay”. No matter what he will catch up. I really needed to hear that in the early months after her birth. She still has her weekly physical therapy sessions. We do the recommended therapy exercises each day. In the beginning I wanted my child to be able to move her legs independently, like her twin brother and walk unaided. I prayed that this would happen. She is three years old now. The day that she used a wheelchair for the first time I was surprised. I never knew much about the lower part of the body. The more I learned about her diagnosis the more I was shocked.
ReplyDelete