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Pinwheels

Expecting Adam,

by Martha Beck, is this month’s book club selection at Downsyn.com. We’ll be discussing the book there in a little more than a week, January 18. The discussion occurs online and can be read by anyone; to post questions or comments, you must be registered with Downsyn.com (or you can email me and I’ll do it for you).

I remember reading Expecting Adam several years ago, when I was a new mom to Avery. I disliked it, as I did most things I read, then. I was trying to find a story that fit me, and like a real-life Goldilocks, I tried them all out, to no avail–this one was too small, this one was too big. I didn’t realize then that the only story that would fit me was my own, and we had only just begun to make it.

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Pinwheels

Avery, sleeping

Avery is afraid of the dark. In the room he shares with his brothers, there is a glowing turtle nightlight, and also a musical globe that shines patterns of circus animals on the ceiling. Sometimes, if he hasn’t fallen asleep before the globe’s song ends, he’ll whimper, then cry. I go to him, and kiss his nose, and restart the light show.

Last night, as I kissed him, it was as if we were the only people in the world, him and me beneath a sky of monkeys and lions, elephants and giraffes. The love I felt for him was so pure, and so strong, it momentarily took my breath away.

Categories
Pinwheels

Winter blues?

Go here and read about Apostrophe S’s vacation on the island of Kaua’i. I can feel the tropical breezes even as I type this…

Categories
Down syndrome

More mamas making a difference

Go here to read the inspirational story of two moms who saw a need and filled it. And thanks to Courtney, who originally shared the link on Downsyn.com.

Categories
Writing

Mamas making a difference

A special nod of appreciation to two writer-mamas who share their thoughts on mothering with the larger parenting community.

Vicki Forman begins her “Special Needs Mama” column, which will appear monthly at Literary Mama, with an essay about parenting her multiply-disabled son Evan, called “The Mother at the Swings,” here.

And Karen at “Lion and Magic Boy” will begin posting regularly over at Nerve.com’s Strollerderby; her first entry is called “Strike Three for Diversity,” about the new recommendations for universal prenatal screening, here.

Categories
Down syndrome

A balanced look at diagnostic screening

Though this PBS news story originally appeared back in March, it seems more timely than ever. I missed it the first time around and would have missed it again if it weren’t for “All 4 My Gals”, who has the link posted on her site, too. Thank you!

You can check it out here.

Categories
Pinwheels

Playing Topple with two 3-year-olds

“Green, green, blue, green!” Bennett says, as he stacks the little disks on top of the tower he is building. The colors, in reality, are pink and yellow.

“Green, green!” Avery says, as he takes his turn at the tower. His colors are yellow and purple.

And now it’s my turn, “Yellow, pink,” I say, unsure what else to do. As with all the games I play with the twins lately, I am the last to figure out the rules.

“One, two, five, eleven, nineteen!” says Bennett.

“One, two, three!” says Avery. It appears that we have switched to numbers.

“One, two, three,” I say, copying Avery, pointing to the three of us, then patting each of us on the head.

“Duck, duck, goose!” says Bennett.

“Goose!” says Avery, and turns and scoots away, and Bennett runs after him. I am too slow, as usual, left behind amidst the Topple pieces, green green blue, one two three.

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Pinwheels

The fence

There is a family that lives on the other side of town in a budding community development. One of the things they agreed to, when they bought the property, was to maintain certain exterior appearances, including a restriction on fences.

The family has a middle-school aged boy with Down sydrome, and they would like to put up a special kind of fence. A disagreement is brewing, and feelings are beginning to get hurt.

I’ve heard one side of the story, and I can imagine the other. On the one hand, the family moved into the neighborhood aware of the restrictions, and they agreed to them. The child, whom we assume is the reason for the fence, was with them then. There are other, equal kinds of fencing that would seem to work as well as the not-approved kind. And whatever they build will become part of the neighborhood forever, or for as long as the materials last. The family may move away; the fence will remain.

On the other hand, here is a family with a child whom they might be feeling they can not manage. They want a special fence, a different one than what is allowed (for whatever reason, I don’t have all the particulars) because they believe they need it. They are asking their neighbors to support them, and that support is not forthcoming.

I am thinking about the fence today because it raises the question of fairness. What is fair, in this situation? What is the right thing to do? Most days, I push hard for the world to look at Avery as a person first, a human being in his own right, without exception. Sometimes I come up against situations in which I must acknowledge, okay, he isn’t exactly the same as other kids–sometimes we need help. And if this family is asking for help, in their pursuit of the outlaw fence, shouldn’t we support them?

There is a phrase that folks live by in rural communities–good fence makes good neighbors. The message here is something like, “let’s be clear about our boundaries right at the start,” and also “you mind your business, I’ll mind mine.” Where properties come together, there is another rule of thumb: meet at the middle, facing each other, and each neighbor maintains the fence to their right.

Part of me is wishing for a Hallmark solution, where the family articulates exactly what they need and the community finds alternate ways of helping them. Do they need to keep the boy away from the road? Maybe they could use a gate. Do they need a safe place for him to play? Maybe there is a provision for a play area in the community design. Or, do they simply want to fence others out?

I don’t know the answer. What I do know is this: making a good fence is more important, and more complicated, than I realized.

Categories
Pinwheels

I love a parade

The kids and I are watching the Tournament of Roses Parade. Fog is creeping across the lake and the roads are glassed in ice, but on television, the day is bright and sunny.

Bands march past the cameras, and Avery plays air drums. Flower-covered floats ride along, and Avery waves his hand in the air like the Mayor. Bennett copies him, Carter next, and I join in too. We are all waving, hello, hello, welcome. Welcome 2007.

Happy New Year, from our house to yours.

Categories
Down syndrome

American College of Obstetricians and Gynecologists

will begin recommending that every pregnant woman, regardless of age, be offered a choice of tests for Down syndrome. Previously, such diagnostic tests were only recommended for women over the age of 35.

The new guideline is published in the January issue of the journal Obstetrics & Gynecology. You can read more about it here.

Categories
Pinwheels

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.

Categories
Down syndrome

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.

Categories
Pinwheels

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.

Categories
Pinwheels

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.

Categories
Down syndrome

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.