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Mary Cleary Kiely: Children and parents - so similar, so different

In the introduction to “Far From the Tree,” the wonderful new book by Andrew Solomon, the author says we as parents should not speak of “reproduction” but rather of “production,” for every new child is strange to his or her parents in some way.

Solomon’s book focuses on extreme cases of this. While recognizing all is a matter of degree, he profiles families where children’s differences from their parents are profound along some dimensions (as with Down syndrome, autism, homosexuality, deafness, schizophrenia, criminality, dwarfism, prodigiousness, being transgendered, and being conceived in rape).

Solomon’s intellectual and emotional journey, over the 10 years he spent researching and writing the book, began in pity but ended in deep respect and receptivity. His work, he says in the conclusion, is ultimately “a description of how to tolerate what cannot be cured, and an argument that cures are not always appropriate even when they are feasible.”

With all three of our children, now ages 19, 17 and 11, I have at one time or another felt the bafflement that comes with encountering aspects of their individual selves that are foreign to me, or are at least not within the bounds of my experience. It is not always easy to discern when “WWID” (What Would I Do?) would be good or poor advice, in part because none of my kids is a mini-me.

In the face of such complexity, one can react with humility and probing, or with denial and the equivalent of a psychic sledgehammer. I have done both.

This journey of discovery has been especially intense with Christina, our 17-year-old who has Down syndrome, autism and vision impairment. Consider two recent examples. One is physical, involving her vision. The other is more psychological or spiritual, having to do with her preference for spending large amounts of time alone.

We don’t really know what the world looks like to Christina, literally or metaphorically. For starters, she has nystagmus, an untreatable, neurologically based condition that causes her entire visual field to shake (one thinks of static on a TV screen). She has small cataracts scattered like snowflakes across both her lenses, which cause gaps in vision and make her very sensitive to glare. She has no depth perception on account of the strabismus (eye-turning) she was born with. And she’s far-sighted, requiring corrective lenses.

Christina’s art teachers, I have always thought, have been models of how to cope with all this. Her current ones at Amherst Regional High School are particular standouts. They could have discouraged this student with lousy vision (and a lot of other challenges) from even taking art classes. Instead, they have warmly welcomed Christina, recognizing by their actions both that everyone needs beauty in his or her life and that conformity is overrated.

A recent painting that Christina did with a palette knife, one that her teachers ended up entering in the Boston Globe Scholastic Art Competition, is beautiful and arresting. Christina titled it “Something.” Thickly textured swirls of yellow, blue and black appear and recede, converging on a gray mass near the center. Is this what she sees, knows, experiences, wants to communicate? Much about our kids remains depth and mystery.

To give another example of the challenges of understanding and negotiating difference, for a couple of years now Christina has been insisting on spending large amounts of time in what we call our away room. It’s a sparsely furnished space in our home with banks of three-quarter-length windows facing south and east, so it’s filled with natural light. If left to her own devices, I think Christina would sit there indefinitely on the thick rug, quietly looking out the windows. We have to make her get up and engage in activity.

What is this about? my husband and I have asked ourselves and each other. We started with: Maybe she’s depressed. “Try medication” came the ready response. But Christina’s retreat to the away room has never seemed to come from misery, but rather to be a source of relief.

Maybe she’s just exhausted or needs a lot of downtime, we came to next. (Don’t we all need more downtime?) Christina spends most of her school day in a substantially separate program at our local high school. She is happy there, but like most kids with functional deficits in multiple areas, she ends up working for large chunks of time on tasks that are very hard for her. She also goes to some after-school classes and recreational opportunities at Whole Children in Hadley, an enrichment center for kids and teens with special needs.

Christina mostly seems to enjoy these things. But when I see her come home and make a beeline for the away room, I sometimes ask myself a question that is never far from the minds of many parents of kids and teens with special needs. And that is: At what point do my efforts to stretch my kid cease to be a responsible effort to increase the dignity of and the opportunities available in her life, and become instead a refusal on my part to really accept her as she is?

The answer is different for every kid, and every parent. It is even different in different periods of life. But the question is an important one. And it doesn’t just apply to kids with disabilities.

On Valentine’s Day I took my kids to CVS. When I came out I spotted what looked like a hot pink notice tucked under the wipers of my car. A seasonally colored parking ticket? An ad for something to increase the size of something?

It turned out to be an anonymous Valentine’s Day greeting. On an index card someone had written “Love is never what we expect,” and had attached a $1 lottery scratch ticket.

I won $2 off that ticket. Love may be full of surprises, it’s true. But if we keep our hearts open it just may increase and multiply.

Mary Cleary Kiely’s column appears on the first Tuesday of the month. She may be reached at parenttoparent@gazettenet.com.

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