I watched “The Teachings of Jon,” a documentary about a family’s daily life with their adult son Jon, a forty-year-old man with Down syndrome, filmed by Jon’s sister, Jennifer.
What I didn’t know about this family’s story was that for the first six and a half years of Jon’s life, he lived in a care facility, which was common practice in the ’60s. Parents of babies with Down syndrome were told they wouldn’t be able to handle them, and that the best solution was to put them in institutions. The film shows a Polaroid photo of Jon in a crib, one of many in a line.
When Jon’s care situation disolved, he went home to live with his family. At six years old, he was still in diapers and he could not walk.
Avery would not have learned to walk, I thought as I watched. He wouldn’t have cried out, wouldn’t have caused a fuss. Avery would simply have accepted it.
My dear, sweet boy, I thought. The image of the child in the crib hurt so much I had to stop watching.
Partly, it was my own guilt that overwhelmed me–my memory of the times when as a new mom, I was distant or unsure, moments I kept Avery an armlength away. I wish I could change that part of our life together, wish I could edit it out like cropping a bad photo.
And if I feel this way, what about Jon’s parents? Now, they know better. And they know all that they missed–no baby photos, no tiny Onsies or little shoes. No downy hair to kiss, no frown at the taste of sweet potatoes or peas.
Jon’s parents are professional people, well-educated. They have a beautiful home and three other children. In the film, they seem respectable and reserved, especially the mother. I told my husband Tom, “I want them to talk about it and I don’t think they will and I can’t stand it.”
But because the film came highly recommended, I went back and continued watching. I’m glad I did. They do talk about it, and about many other things too, and what emerges is a portrait of a family that has mended itself, a family that’s found its way back to happiness, and love.