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.

Think of Me First as a Person,

a documentary shown publicly at the 2006 Home Movie Day in New Orleans, has been named to the National Film Registry by the Librarian of Congress, who chooses 25 “culturally, historically or aesthetically” significant motion pictures to add to the Registry each year.

The film is a father’s portrait of life with a child with Down syndrome, originally shot by Dwight Core Sr. during the years 1960-1975. It was restored and completed by Core’s grandson, George Ingmire. More information is available here.

Watching angels with Avery

Avery and I are watching a DVD called “Handel: the Messiah Choruses,” which is music accompanied by still photographs of the Benedtictine Abbey Church, and the surrounding countryside in Bavaria (Yuletide Naxos Musical Journey, 2000).

He sits in my lap, head resting on my chest. I can feel the rise and fall of his breath. I can feel his heart beat. The photographs come and go, marble pillars that look like columns of ice cream, jewel-toned frescos, sunlight streaming through high windows. Everywhere, there are angels.

People sometimes say Avery is an angel. I am studying him now, curious to learn what he thinks of the seraphim.

He is unimpressed.

When we see the farmer with his cows, Avery claps. Bright blue sky, he claps. Again, for the pink fuscias cascading from a window box. But when we return to the interior of the cathedral, Avery begins doing the hand movements to “Itsy Bitsy Spider.”

I’m not sure if Avery is an angel. I’ve come to understand the phrase as a sign of support–people want me to know that they recognize Avery is different, and that they accept him by telling me he is not of this world, but a better one.

But the Avery I know is very much of this world. He is a little boy, with likes and dislikes, his own thoughts and feelings. I worry his angel-status removes him from the world of the here-and-now.

And yet, there is something about Avery that reminds me of God. I haven’t figured it out, but I have learned to stop denying it. Maybe it’s simply the way all children inspire us to our better selves, our highest ideals.

Avery is watching angels, and I am watching him. He is not impressed with the gold, the jewels, the monumental cathedral–all man-made. He loves the cows, and the sky, and the flowers–God’s creations.

There is a lesson here, one I will continue trying to learn.

Steadiness and ease

Maggie, a very smart friend of mine, reminded me that winter, in nature, is a time of slowing down–a time of energy conservation and rest.

Yet despite whatever pull we might feel toward the natural world and its rhythms, for most of us, winter is a time of increased activity and celebrations.

So when the last party is over, the last candle pinched out, the good dishes put away for another year, I invite us all to make a place in our lives for the quiet of winter, the long dark days of steadiness and ease that are prerequisites for the green joy of spring.

Tongue protrusion

A new study by Renato Cocchi, M.D., PhD., suggests that tongue protrusion in children with Down syndrome is “an aspecific symptom, without any relationship with the chromosome 21. Probably it is a symptom of internal metabolic stress with irritability of the hypoglossal nerve nucleus. This fact elicits a stimulation excess of the genioglossus and ioglossus muscles, leading to repetition of the tongue protrusion movement, without any apparent purpose.”

Cocchi based his conclusions on research using antistress drug therapy on children with Down syndrome with an average age at first consultation of 36 months, for treatment over fourteen months, and found similar results in both boys and girls. The information was posted on the Internet in December 2006 and reprinted at the Riverbend Down Syndrome Parent Support Group, which you can read here.

For Jooniper

Try as I might, when Avery was a newborn I couldn’t imagine my life with him. All I could see was sadness and heartache. Sometimes, just looking at him would make me cry.

Almost four years have passed. I wish I could reach back to that new mother. I’d tell her the things that took me a long time to learn, so she’d have them in her heart right from the beginning.

I’d tell her that its okay to be scared, and to feel sad and lonely. You’d be surprised how many other mothers feel the same. The mothers who struggle the most early-on become the strongest. Their resolve is like steel forged in fire.

If you don’t feel like you think you should feel, fake it. Sometimes going through the motions is good enough. Soon, the motions become habit. After a while, the habit becomes real. It’s a place to begin.

Doctors do not always know what is best for your child, or your family. You know more than you think you know.

Your baby will grow into a whole, unique, complete person. Different doesn’t mean broken.

Having a baby, or child, or person with Down syndrome in your life means it will be full of surprises. If you are a person who doesn’t like surprises, you will learn to appreciate them.

The love you feel for your baby will be one of those surprises. Your understanding of it will appear when you least expect it, like sunlight breaking through the clouds.

The love you get back will surprise you even more. It is the gift so many of us talk about, the silver lining. It is pure, like the love of any child, and unchanging. You may not be able to imagine it just yet, but it is there.

It will wait for you until you are ready to accept it. And as with all good gifts, the only thing you have to do is say yes.

China Medical creates two new diagnostic reagents

and will introduce them in early 2007. The reagents are designed to measure “the free beta subunit of human Chorionic Gonadotrophin (“Free hCGβ”) and Pregnancy Associated Plasma Protein A (“PAPP-A”), respectively, in maternal serum,” which are markers of Down syndrome. To read the press release from the company, go here.

I have mixed feelings about this news. I understand that the research is often market-driven, meaning that as long as consumers are interested in these sorts of tests, there will be more of them developed. But what I’d like to see is a commensurate development of support systems for parents who receive these early diagnoses.

A nurse’s refusal

Focus on the Family, a prolife Christian organization, reports the story of a nurse who, because of her religious beliefs, refused to assist in the abortion of a 22-week fetus with Down syndrome, which you can read about here.

The article doesn’t mention the name of the Chicago hospital where the nurse worked, and I can’t find mention of this story in other news. What I find interesting is that the law supports the fact that the nurse has rights in this situation, and can not be required to participate in procedures she finds objectionable for personal reasons.

Happy new year, ASL-style

I remember being a new mom to Avery and watching the second Signing Times video, “Playtime Signs.” At the end, there is an original song by Rachel Coleman. I used to watch the show for myself, just so I could listen to the song, called “The Good.” It brought tears to my eyes, and became a sort-of anthem for my life, then.

The song can be heard here. Or go here to see Rachel demonstrating the signs for “Merry Christmas” and “Happy New Year.”