As promised last week, following is my interview with George Estreich, author of The Shape of the Eye.

You may be wondering why, of all the memoirs out there about raising a child with Down syndrome (and I’ve read plenty), I continue to talk about this particular one.  The answer is simple: it’s a very important book.  It’s unique from other books of its kind, which typically tell a familiar story about grief and acceptance.  In The Shape of the Eye, George Estreich not only tells of his own experience raising a child with Down syndrome, but examines how attitudes about Down syndrome have been shaped by history, as well as how attitudes about cultural and ethnic diversity, family, and belonging have been shaped and continue to evolve.  It’s as much a study of humanity as it is a story about one family.

If you haven’t read my review yet, you can read it here.  Leave a comment below with your thoughts regarding the interview, and you’ll be entered to receive one of three copies of The Shape of the Eye I’ll be giving away.  I’ll announce the three winners here on Friday.

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LM:  In my own experience having a child with Down syndrome, I have found that the landscape in the parenting-a-child-with-Down-syndrome community tends to be predominantly Christian, and so there tends to be a certain belief system in place for these parents that their having a child with Down syndrome was the result of some kind of purposeful divinity.  I got the sense from your book that you and your wife have a more secular belief-system.  What are your thoughts on people attaching religious meaning to having a child with Down syndrome?

GE:  I don’t really have an opinion about religion and parenting per se. People raise children with the values they have, which are a mix of what they were raised with and what they’ve discovered along the way. The real challenge is learning how to draw strength from those values while facing a new and unexpected situation.

I don’t know if there’s data out there on who we are–“we” being the parents of children with Down syndrome. But since there are around 400,000 people with Down syndrome in the United States right now, and since trisomies occur at random, I assume we’re a fairly diverse group. One of my hopes is for that diversity to be recognized more widely.

LM:  I know your daughter Laura has an older sister, Ellie.  What kind of relationship do the two of them share?  Can you talk about some of the unique issues that older siblings tend to have concerning having a younger sibling with special needs?

GE:  Ellie and Laura are five years apart. I think of Laura as being like Prometheus, who stole fire from the gods: Laura worships Ellie but also wants to take stuff from Ellie’s room. As I wrote in the book, their relationship seems perfectly normal to me.

I’m hesitant to speculate on the issues, though, because it’s not something I’ve done research on. For anyone who’s interested, I think a good starting point is the Sibling Resource List at ndss.org.

LM:  What are your thoughts on prenatal screenings?  Do you think they have real value in helping parents-to-be prepare for contingencies, or do you think there is a hidden agenda to eliminate “defective” babies?

GE:  The short answers first: yes to the first question, no to the second. But because this question raises a number of difficult issues, and because this is the minefield of minefields, I’m going to elaborate–and, to some extent, question the question.

I think there’s no question that prenatal diagnosis can be of use to expectant parents. Whether it is, I think, depends a lot on the parents–and on the doctors who help them make sense of the information the test reveals.

The second question is more complicated for me. Strictly speaking, expectant mothers do use prenatal diagnosis to make decisions about fetuses with Down syndrome. That intention isn’t hidden, though: it’s one of the reasons, probably the main reason, that women use prenatal diagnosis. Their decisions, however, may not be based on an assumption of “defectiveness,” but on other criteria.

As for an “agenda”–that implies something beyond the individual level. In the past, screening programs have been openly justified in terms of eliminating defect, so I’m not sure if anything is hidden there.

I come at this question from an odd angle. My general feeling is that people with Down syndrome are obscured by the issues they remind us of. Too often, we don’t see individuals; we only see big questions about education, or eugenics, or prenatal diagnosis. So I try to treat these questions as separate from our experience of Laura. On a practical level, we made our own choice–which was not to test–but we don’t use that fact to recommend a course of action for others. Lives are too diverse.

To me, the core issue is the way Down syndrome is understood: not whether prenatal tests should exist or be available (because they will, in increasingly accurate and noninvasive forms), but what conception of Down syndrome accompanies the diagnosis. My hope is that explanations of Down syndrome will go beyond the merely clinical–the list of possibilities and bad outcomes, footnoted “happy”–and do justice to the real and complex challenges and joys of raising an individual child.

LM:  You did a lot of research about John Langdon Down and the treatment of people with Down syndrome from a historical standpoint.  It was only a few decades ago that babies born with Down syndrome were almost always placed in institutions.  What happened to change that trend?  In other parts of the world, babies born with Down syndrome are still routinely placed in orphanages/institutions.  What do you think it will take to change that?

GE:  I think the short answer is that the change was driven by independent-minded parents, who refused to institutionalize their children even when this was the standard recommendation. In addition, the disability rights movement–inspired by the civil rights movement–won legal protections and rights for the disabled, such as the right to attend school. The legislation that guarantees Laura a free, appropriate public education (that’s FAPE, of course, to you IEP veterans) didn’t come along until I was in middle school. Geraldo Rivera’s exposé of Willowbrook, an asylum with unspeakably wretched conditions, didn’t hurt either.

To raise a child at home, some level of societal support has to exist. If it’s simply not financially viable–if, for example, there’s no daycare to take on a disabled kid, or no right to go to school–then raising a disabled child at home isn’t really a meaningful choice.

I’ve only recently begun to learn anything about these issues on an international level (for a great blog on this topic, see advocatemama.com), so I’m hesitant to offer more than speculation. But I think that, as in the U.S., there has to be some combination of a shift in social attitudes, an increase in social support, and a critical mass of parents to drive the change. It’s also likely that where conditions are horrific, media images will accelerate or catalyze change.

LM:  Sometimes I feel utterly humbled by watching my son, Finn, grow and make developmental strides, however slowly.  In hindsight, I realize that, though I really knew next to nothing about Down syndrome when he was born, I definitely had some preconceived notions about what he would and wouldn’t be able to do.  What are some things you thought Laura would never be able to do that she is now actually able to do?  Are there things that you had hoped she would master by now that she hasn’t?  What feelings does that elicit for you as a parent?

GE:  When Laura was born, I didn’t know a lot about Down syndrome. Basically nothing, actually. So I didn’t have many specific notions about what she could and couldn’t do. I will say that in the early days, my expectations were probably too extreme at both ends. I sort of got the impression that if I worked really hard, Laura would graduate with a regular high school diploma, and if I didn’t work hard enough, she would just not progress at all. The truth has been gentler and somewhere in the middle. Every child is different–that’s just as true for kids with Down syndrome as for typically developing kids–and so there was always more hope than I had when I was hopeless, and always a reasonable limit to what was going to happen through nurture. The trick is to take advantage of your child’s strengths, while being realistic about achievement.

“Realistic,” by the way, is often used to imply “unable”–as in, “let’s be realistic about what she can do.” I’m talking about something different: a positive realism that shoots as high as possible. So, no to calculus, but yes to arithmetic.

As for Laura’s achievements, they all make me proud, they all surprise me on some level, and then they don’t surprise me either. But I’m more happy than I can say to see her reading. Even when she complains about how hard it is.

LM:  In your book, you talk about the conflicts between you and your mother.  Has she read your book?  What has her response been?

GE:  My mom read the whole manuscript after editing was finished. She wrote me an extraordinarily generous letter about it, and I think she has bought more copies than anyone else.

Writing about family is difficult. My goal was always to be honest, but not vindictive. If I was looking to the past, it was in hopes of moving forward, not settling scores.

Laura’s arrival was a shock, and we were all reeling from it in different ways. As the book shows, it took a long time to sort out–and as I write in the book, I worried during the writing that the book would make things worse. I feel fortunate that that hasn’t been the case.

LM:  Being a stay-at-home-dad is still a relatively rare thing, even in our so-called “progressive” society.  Do you feel there is a stigma associated with this arrangement?  Have you personally experienced less-than-supportive attitudes about it?

GE:  I haven’t personally experienced stigma, or even less-than-supportive attitudes. As Theresa, my wife, says, the real problem is isolation and not stigma–and that isn’t particular to at-home dads.

Of course, I’ve been very careful to live in left-leaning college towns where everyone thinks you’re extra sensitive just for doing what women usually do. Perhaps in other towns I would have to wear a scarlet “D,” but I don’t think so.

LM:  What are you writing now?  Any plans for another book?

I do plan to write another book–more than one, I hope!–but right now, my main work is promoting The Shape of the Eye. Writing a book is only the beginning: if it doesn’t get into the hands of readers, it effectively doesn’t exist. That said, I’ve been working on some short essays about life in Australia, where my family and I spent a year on sabbatical. Two have been published in online journals (Eureka Street, an Australian journal, and Superstition Review.)

LM:  What are your hopes for Laura’s future?  Do you feel those hopes are realistic?

GE:  My hopes are for Laura to have friends, feel satisfied and accomplished, and to live as independently as she can. I think these are realistic hopes–though the world is changing so fast, that the reality is hard to envision. Services for adults are underfunded, and our current mania for cost-cutting will impact the disabled first.

LM:  If you could tell a new parent facing a diagnosis of Down syndrome for their child anything, what would it be?

GE:  First off, I’d say: congratulations on your new baby! Pat Hill, our first Early Intervention coordinator, told me that when I called her to ask about services. Her saying so really helped to put things in perspective.

Second, I’d probably ask how things were going. Because Down syndrome is incredibly variable, and because every family is different, I’d try not to say much without learning about the particular child and the family. And in any case, I’m neither a doctor nor a licensed therapist, so I’m hesitant to dispense advice.

That said, I’d share one piece of advice based on my own experience: I wouldn’t spend too much time looking things up. Even good information about Down syndrome tends to emphasize what can go wrong. The fact is that every child is different, and so there’s no use worrying about leukemia, or torticollis, or intestinal atresia, if your child doesn’t have those things. To the extent that you focus on problems, stick with the ones your child actually has–and remember that those will only be part of your experience.

LM:  What is the most important message you would like to get across to the general public concerning Down syndrome, disabilities, and differences among people?

GE:  One reason I wrote my book was to try, in a tiny way, to nudge the common sense of Down syndrome in a different direction. Even the positive perceptions of people with Down syndrome tend to emphasize childlike qualities. I’d like to broaden that positive view to include a vision of ordinary adult citizenship. Unless we begin as a society to imagine people with Down syndrome as adults–adults who want to work and live independently and thrive–then we won’t provide them the support they need to do so.

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Many thanks to George Estreich who graciously and patiently answered the interview questions I sent to him!

author interview, Down syndrome, George Estreich, The Shape of the Eye