My son Paul is six, and while he is very social and engaging, his world remains mostly silent. Down Syndrome makes talking difficult, and being capable of making his needs met other ways, Paul opts not to bother. We've done speech, we do speech. I know sign and we have velcro pictures for him to use to make choices, but most of the time, he points and says "Ahhh." or something with some vowel sound and everyone around him uses the context to discern, "It's too hot? You're thirsty? Did you like that show?" and he lets us know when we've interpreted it correctly with a high five.
Something about his younger sister becoming potty trained and starting to read jumped me up about his language. I began researching video programs that hold out the promise of breaking into his world, making words more alluring. However I've held back. They're expensive, and the number one thing required for any communication system to work is consistency. I hear from school he's very engaging, so I want to video tape him in his school environment and see what they're doing to get more out of Paul before I plink down dollars that might undermine what already is there via the speech therapists and teacher.
But words are something I love, and I want my son to have a world open to him. Words open the world. People treat you as a person when you can tell them, I want, I need, Yes, No, in a way they don't always feel obligated when a person is silent. I tried starting a conversation with Paul when we reached a light, he looked out the window, signalling to me, "Not interested."
We were in my husband's car running errands. Two of my kids were plugged into their phones, a third on a kindle, Anna is asleep and Paul staring out at a world that flies by without understanding. The silence bothered me, so I rummaged in the CD collection and popped in the Eagle's Hotel California. I'd bought last year as part of a Christmas present, which included tickets to see them live. The Eagles hold a place in my heart, it doesn't matter the song, I hear that steel guitar and it evokes my father, the beach house, my extended family and a sort of stillness I've only known at that home on the Bolivar Peninsula; people and places I can only have here in this world in my memory. My kids know all the songs and they're singing the lyrics of Hotel California with as much gusto as I did with all my cousins around bonfires while eating frito pie and charred marshmallows.
The next song is a favorite, we sang it whenever we'd bring home a new baby, "There's a New Kid in Town." I take the lead. Until I realize someone else is singing with me. He's humming. Paul is harmonizing with Glen Frey and Don Henley. I think I'm imagining things but he goes on, his voice rising and falling, it's mostly vowels but he's singing along. "Are you singing?" I asked. He nods.
We play the song again. The magic, no, the miracle begins again. Everyone is harmonizing behind him. "Johnny come lately...the new kid in town...everybody loves him...so don't let them down." I whisper a thanks to my dad who I know is singing along with his brother, the Desperado in the risen version of our long lost beach house. I get us back to our home, the high of it still there in my heart even as my brain tries to reassert itself, get a grip. I don't want to though, I want to hold onto the strains of the song and his singing, just like the memories of my dad and the beach. It doesn't make much sense to the world, or even to me why I'd get so teary over his singing/humming of a song. It's not functional or practical, it still doesn't help him get his needs met. But it's communication. It's singing for the pure purpose of making the sound and I love it.
As miracles go, it's crazy stupid. But it's also awesome. Thank God is all I can muster. I'm grateful just the same, for the crazy stupid breaking through the silence of my everyday.
As miracles go, it's crazy stupid. But it's also awesome. Thank God is all I can muster. I'm grateful just the same, for the crazy stupid breaking through the silence of my everyday.
