More on The Teachings of Jon

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.

5 thoughts on “More on The Teachings of Jon

  1. Excellent points! Karen, I agree wholeheartedly. My experience with my son was a slow process of realizing I did have what I needed to be his mom, that intuitive parenting you speak of. And Christina, I think it’s wise to protect yourself from some of the negative, and hurtful stories we run into about our children. That too was an early lesson–I needed to find things that supported me in my parenting, things that made me feel good about myself and my family and I make no apologies for it. It’s the only way I can be of any use to anyone, myself included.

  2. I am glad you watch the whole thing and found that it had a happy ending… I am having a hard time watching things that don’t begin happy and stay happy the whole time, especially if it has to do with DS. I am hoping I will get stronger as I grow with Vincent, I have learned so many things and reached million miles from where I started three days after he was born. in the beginning I thought I would never laugh again, or never be happy, I would always worry and the last thing at night and the first thing in the morning was Down Syndrome. Now, I simply forget that he has it. I mean, my little Prince is the coolest kid in town! A tad biased, I know, but that is just the case 🙂

    Happy New Year to you and your family from us across the pond!

  3. I routinely watch my son revert to that same shutdown mode, every time he goes with his father. It’s heartbreaking.

    I think parents of children with Down syndrome today are in a similar (but very different) spot as they were in the 60’s. We still have a host of “experts” telling us what is best for our children. Many of us go along with this, not knowing any differently, trusting that the experts really do know best. It removes us from our own intuitive parenting powers but remains extremely difficult to shake. I have to wonder what life will be like for children with DS born in yet another 50 years — what will that look like? And what can we do today to help shape the inevitable changes?

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