Time for homework: “Read with your child daily for 20 minutes”. Most often, Aubrie likes for me to read to her. Sometimes, we take turns reading a page at a time. On this night, she declared that she would be reading to me.
What a treat! I snuggled up with a blankie on the sofa for my bedtime story. I haven’t been read to since I was a little girl. To my delight, she did a fairly smooth job of reading even the big words. This was a story with which Aubrie is extremely familiar. She has 3 different movie versions of the Tom Sawyer and Huck Finn story and has met Tom, Becky, and Mark Twain in Hannibal. Reading aloud about their adventures was a piece of cake. She knew most of the words, all of the names, and read the character’s words in quotations with great enthusiasm and emotion.
After the story, we began to chat. A random conversation about Tom and Huck, our new kittens, Broadway shows, the kids at school, bullies… anything that came to mind.
Soon, I said, “Aubrie! Uh, oh! You still have more homework and we’ve been chatting for nearly 20 minutes. We’d better go do it! But, you know, I’ve really enjoyed chatting with you. We haven’t done this in a long time.”
She agreed, “It’s awesome!”
When I again said how much I enjoy talking with her, she said, “Oh, yes, because you like my voice.”
With a chuckle and a hug, I said, “No. It’s not because I like your voice. It wouldn’t matter what your voice sounded like. It’s the words you say that I like. It wouldn’t matter if you didn’t have a voice. If you used a talking machine or sign language, I’d still love to talk with you. It’s about your words -- not your voice.”
She laughed at the absurdity of caring about a voice more than words and agreed whole-heartedly. In fact, we recalled a time when she first met a young woman with CHARGE syndrome. Some time into the visit, Aubrie asked, “Why does she talk with that voice?”
I had to explain that “that voice” was very much like Aubrie’s own voice. With hearing impairment, structural differences, and cranial nerve and oral motor weaknesses, the voices and articulation of people with CHARGE syndrome are not usually typical. At that time, Aubrie had no realization that her own voice was different to the rest of us. But she sure noticed when this young lady’s voice was not like others’.
Now she realizes the limitations of her own speech and actively works to speak as clearly as possible. She communicates with her classmates at the Illinois School for the Deaf using various combinations of voice and sign language. We both understand that communication and conversation have less to do with vocal quality or speech ability and everything to do with words, ideas, and connection.