We started learning American Sign Language as soon as we found out about our daughter’s genetic disorder—one that is almost always associated with severe speech issues. We relied on a variety of ASL resources, but a favourite (and the most fun) was a PBS show called Signing Time. A friend gave us the DVD set which we watched a hundred times. It’s no longer on television, but you can find it on You Tube.
As Avery started verbally saying words, and eventually longer more complicated sentences, sign language went to the wayside. She was talking with actual, understandable words and it was the sweetest sound.
Two years Avery was formally diagnosed with a profound speech delay. We weren’t surprised, but we were hopeful that with maturity and hard work, her speech would improve. And it did. For a little while.
Since then, her speech has declined even more. Especially in the past few months. I tend to panic when I don’t know why things are happening. And for no apparent reason.
The ideas are there—she knows what she wants to say and she wants to say it, but she struggles to get the words out. Like, really struggles. It’s hard to watch. Harder still, for me at least, not to jump in and speak for her.
She stutters and stalls at the beginning of every sentence and goes around in circles, sometimes forgetting the point before she can get there. It’s exhausting. And frustrating.
We’re looking for a cause and trying our best to support her in all the ways we can. I’m researching vitamins and omegas, speech exercises, links to hypotonia, sleep disturbances, and possible night seizures. I’m combing the internet the way I used to in search of nuggets of information reminiscent of when she was newly diagnosed. I feel like a special needs newb all over again.
I’m not sure she’s even aware of how hard she’s struggling to communicate. The kid is always happy and rarely complains. She just keeps on keeping on.
But then after swimming lessons tonight, she crawled under a blanket on the couch and turned on You Tube while I made dinner. Of all the things to watch, she searched out a gem from the past… she found some old episodes of Signing Time. I didn’t suggest it or help her find it.
I didn’t even know what she was watching until I heard the familiar theme song. I looked over and she was signing along. Speaking and signing along.
Maybe she is aware that her speech is a challenge after all? Perhaps she’s seeking help on her own, in a way that is safe and silly and familiar.
How smart is this girl? We just love her so much I can’t even tell you. For once, it’s me who doesn’t have the words.