I wish I had had a camera.
From my seat, the upright pipe organ was framed by my mother’s profile on the left and Deane’s on the right. Both their faces shone with that kind of eye-sparkle, inner-warmth glow.
It is one of Deane’s rituals after the service to half walk, half dance across the front of the church while the organist plays a postlude. Sometimes he goes over and watches the organist play with his hands and feet, pulling and pushing the stops to change the sound and open doors on the organ.
Other times, he heads straight for his grandmother – one of his favourite people and a large part of the reason he goes to church.
Usually, when we sit with my mother, I hold Deane up or he sits beside me and I support him. Last week he walked right up to his grandmother, gave her a hug and nestled, part standing, part sitting, between her knees. She was supporting him.
It is clear to everyone in the church that Deane likes music. He dances to the hymns – an unusual sight in a typically conservative Presbyterian church. But what you can’t understand, unless you can feel his muscles twitch, is he how much he understands the music.
Because she was holding him, my mother was – perhaps for the first time – aware of how Deane appreciates the crescendos, feels the changes in the rhythm and anticipates the finale. The music truly moves him and he expresses it in small, unexpected and unusual movements.
When my mother commented on Deane’s full-body experience of the music I was struck by how difficult it is to communicate to others the effect music has on Deane. Many people asked him afterward if he had enjoyed the music. My mother and I responded for him: “Yes, he certainly did.” But the conversation couldn’t go any further.
In her blog following a screening of the movie Certain Proof, Louise Kinross at Holland Bloorview Kids Rehabilitation Hospital talked about the need for parents to become better, louder at telling our non-verbal children’s stories, including their gifts and what is really important to them. She wrote:
I think we’re often silenced in this way because it’s hard to find the words to convey who our children are without speech. We see clearly our kids’ personalities and interests and strengths. But when the average teacher or student looks at our children, they only see what is different.
(Certain Proof is a movie about three non-verbal children and their treatment and challenges in the regular school system in the U.S. I’m not certain I have the courage to watch it.)
While I’m still struggling with how to convey Deane’s love of music, my husband embraced Deane’s enthusiasm and took both kids to enjoy another favourite musical experience: Rush, live in concert.
Great post! — I loved hearing about Deane and how the organ moves him! That’s just the kind of story we need to hear. Very cool that they got to see Rush!