Posts Tagged ‘
Down Syndrome ’
Thursday, April 3rd, 2014
For Autism Awareness Month this April, I want to take a second and recommend a beautiful memoir called Know the Night by Maria Mutch. Her son has Down and also autism. She has a lot of heartful advice for all of us:
KK: How common is a dual diagnosis of Down syndrome and Autism? MM: The presence of autism in people with Down syndrome has really just started to be recognized in the last dozen years or so. The thinking used to be that a person with Down syndrome somehow could not also be autistic. Now there’s a better understanding of autism and its incidence alongside other major diagnoses. My son Gabriel’s autism diagnosis didn’t happen until the age of six because it was difficult to tease apart his characteristics. When his diagnosis was finally made, I went through all the typical emotions, including being angry; in the end, however, the diagnosis proved to be a relief because there was less mystery surrounding what was happening to him.
KK: Why did you write this memoir about your son and his special needs with a backdrop and parallel story of a historical narrative?
MM: I wrote about the polar explorer and aviator, Richard Byrd, and the time he spent alone in a hut in Antarctica in 1934, in part because I came across his book, Alone, and loved it. During the two year period when Gabriel developed his sleeping disorder, I was pretty much at loose ends and found that in reading Byrd’s book there was something like solace. The story had some parallels with our own, if only figuratively, and there was the presence of night in Byrd’s book as well, as he was in Antarctica during the part of the polar year when the sun doesn’t rise. The other very important reason for writing about Byrd was because I noticed, in the unique stories of isolation of both Gabriel and Byrd, a universal narrative about fearing being alone and longing to connect. I could enlarge the story of Gabriel and me by talking about Byrd, and then go beyond that. We all know what it is to feel isolated, regardless of our life circumstances.
KK: How do you think music—especially jazz—has been therapeutic for you, your son, and for your whole family?
MM: Discovering that Gabriel enjoyed jazz was a marvelous thing. It gave us the opportunity to connect with him and see another side of him, and it gave us a language, in a way, when he had lost all of his spoken words and signs. Gabriel does not have the auditory sensitivity that is common to children on the spectrum, and so we were able to maximize his tolerance. Listening to live jazz, in particular, gives us another way of getting Gabriel out in his community in a way that seems really meaningful. Jazz musicians tend to be very accepting of him in the audience and he has often rewarded them with some nice rocking or clapping (although, as he is now a more grown-up teenager, his response is more tempered than it used to be). This experience also taught me to love jazz—I had certainly been a listener prior to Gabriel’s introduction to it, but listening with him taught me to listen more closely and to tolerate some of the more dissonant forms. His willingness to sit with some pretty complex music showed us that his response to the world is also deeper and more complex than some people would guess.
KK: It’s April and Autism Awareness Month, do you have any advice for other families dealing with a dual diagnosis that includes autism?
MM: The first thing that comes to mind is that they are not alone. Getting a second major diagnosis can feel overwhelming because just when you think you’ve read your last book about the original diagnosis, you discover there is this whole other world you have to attend to; and meanwhile you still have to care for your child, possibly other family members, and also care for yourself. So my advice is to start very, very small, and also to recognize the need for fun—something that I think people with ASD can be robbed of in the name of therapies and developmental charts.
KK: Anything else you’d like to say about your book?
MM: I was on a search for answers but quickly discovered that answers are not the point, only better questions. The search for meaning is central to life, and maybe one of the benefits of having someone like Gabriel in our family is that he gives us plenty of opportunity to philosophize and to ask questions. He deepens our experience; hopefully, in some fashion, we are able to do the same for him.
KK: Mother’s Day is coming. Tell us what’s special about your son please in your own words!
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MM: Part of the answer to this is contained in my previous response; another part of it is that he is a wildly powerful person. I have seen him, almost routinely, change people, including those who were reluctant to interact with him or work with him; he turns people into friends and advocates. The children who befriended him in elementary school where he was fully included in the typical classroom are still benefiting from having known him and he from knowing them. Every year when Mother’s Day rolls around, it feels like a sacred day to me. Gabriel changed me most of all by making me a mother.
Tuesday, June 4th, 2013
Popular writer, blogger and photographer Kelle Hampton first released her beautiful memoir called Bloom last year. Recently, it came out in paperback. It’s the story of her family, including two daughters (now she has a baby boy, too), Lainey and Nella. Nella was born with Down syndrome. Kelle emphasizes the importance of not only accepting the unexpected but also embracing it as a gift. Nella is truly an inspiration to anyone who’s met her or read about her online.
I caught up with Kelle and asked her how publishing Bloom has impacted her life. She’s touched many readers through her memoir and blog. Check out what she has to say:
KK: Tell me, in three sentences, what your book is about.
KH: Bloom is the story of the first year with our daughter Nella who was born with Down syndrome. Really it’s a story about perspective–how we survive, grow and become stronger when we allow unexpected circumstances to change us. And Bloom is a reminder that sometimes it takes the most challenging events in our life to truly appreciate our families, our friendships, our own strengths and to understand how our love for our children is the most unshakeable, grounding and motivating force.
KK: You’ve received some amazing feedback from your fans. How have your readers’ reactions impacted you?
KH: I think more than anything, I’ve been really moved by the sense of community that I’ve more deeply understood through hearing from readers. Whether it’s a mom who has, like me, welcomed a child with special needs; a woman who’s faced the unexpected with other challenges such as a divorce or losing a loved one; or simply a reader who’s stepped out to say “I read your story. I cried. I know what it’s like to love your child so much it hurts,” I am constantly inspired by the way women learn from each other and support each other. There are so many ways to connect these days. Challenges can feel far less lonely than they did back in our parents’ and grandparents’ era. We’re in this together.
KK: Since the publication of Bloom you’ve had a third child. How have the lessons you’ve learned from raising Nella changed your perspective on parenting?
KH: I’ve learned to let go of ideal expectations and redefine perfection, that’s for sure. I think as parents, we don’t even realize how much we expect of our kids and often those expectations are based on our own hopes and dreams. We want our little guys to be great football players, and we imagine Mini Me’s for daughters. You can’t help but begin imagining who your child will be the moment you find out you’re pregnant. But I am continually learning to let go, to let my children show me who they are and what they love. What makes each of my children unique is what makes them perfect.
KK: Have you read any parts of Bloom to your children? What do you hope that someday they will take out of your poignant memoir?
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KH: The girls have looked through the book and pointed at pictures. I’ve told them it’s a love story and that I will read it to them someday. Lainey knows the book is dedicated to her because of how beautifully she welcomed her sister, and that’s about it for now. I dream of the day I will read it to them though. I hope through the story, they will know how much I love them and how strong and capable they are as women to face challenges. And for Nella? That will be an incredibly cathartic experience–reading Bloom to her when she’s ready. But I know that she will understand just how much of a gift her life is–how she changed me.
Thursday, April 18th, 2013
Check out The Shape of the Eye by George Estreich that hits shelves in paperback today. This memoir centers on a stay-at-home father and his Down syndrome daughter, Laura, as they learn what it means to be ‘different’ in our society. George recently answered a few questions for me about his beautiful book:
KK: Tell me a little bit about the book.
GE: The Shape of the Eye is a book about raising a daughter with Down syndrome—my daughter Laura, now 11 years old, and the girl pictured on the cover. I’ve been a full-time stay-at-home dad since before Laura was born (my older daughter, Ellie, is in high school), so the book reflects on parenting in general, and being a dad in particular. It’s as much my story as my family’s. Being a parent connects to everything—you can’t be a parent without reflecting, and reflecting on, your own parents—and Down syndrome has its own strange history too, suggested by the old diagnostic name: “Mongolian idiocy.” (The doctor who discovered the condition thought that his patients had “degenerated,” taking on the appearance of a different race.) Those histories are connected, for me, by a strange coincidence: my mom is from Japan, which meant that when Laura was first born (she wasn’t diagnosed in utero), her appearance made the doctors wonder. Were they looking at a child who had Down syndrome, or a child who was one-quarter Japanese? Were they looking at disability, or ethnicity, or somehow both? I wanted Laura to be real to the reader, not as a “special needs kid,” or as someone extra cute and appealing, but as an individual. But that meant debunking some of the misconceptions that attach to her syndrome, as well as setting her firmly in the context of her family.
KK: Why did you decide to write it?
It didn’t feel like a decision. It was something I had to do, though I resisted it at first. I’d always been a poet, but I stopped writing poetry after Laura was born; writing prose filled a need for continuity. I wouldn’t have put it this way then, but shifting forms was a way of preserving a link to the way things were before, while acknowledging the magnitude of the change. It was a way of saying that what I’d learned still counted—which turned out to be true not only as a writer, but as a parent.
The book took about nine years to write, so naturally my reasons for writing hanged as the project developed. In the beginning, I was mainly writing a narrative of shock and adjustment. In time, I got interested in more public concerns: who belongs in our society, the way we imagine disability (or fail to imagine it), and the impact of technology on the family. We can predict more and more about prospective children, so the way we describe those children matters deeply.
I’m excited about this new edition of the book, because I’ve written an Afterword that follows up on some of these questions. It also brings Laura’s story up to date: much of the book takes place when Laura was very young, and so readers are surprised to find out that she’s in middle school already.
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Tuesday, December 4th, 2012
I can only describe Andrew Solomon‘s new 700-page book as deeply profound–at once enlightening and disturbing. I’m halfway through it, and I cannot put it down (even though it’s quite heavy). Far from the Tree: Parents, Children and the Search for Identity tackles the feelings we don’t want to admit we have about kids who are outside society’s norms: the gay, deaf, dwarf, Down Syndrome, autistic, schizophrenic, severely disabled, prodigy, born of rape, criminal and transgender.
Through real parents’ stories, Solomon explores the idea that most people would do anything to avoid abnormalities in our children, but once the issues have appeared, we often wouldn’t wish the situations had been different. Except sometimes we would. Solomon interviews thousands of parents and children to truly shed light on what it’s like to be different.
So far, my three children have not encountered hardships of any importance. But that’s precisely why this book digs deeply into how I feel about myself as a parent. What would I have done if I’d known about a defect in utero? How would I mother a child with special needs? How do I parent the kids I do have? Are my actions based on what’s good for the child—and for society as a whole—or are they based on how I want to be perceived myself?
You have to read Andrew Solomon’s brilliant tome—or as much of it as you can. Pick the chapters that pertain to or interest you. Or just read Solomon’s first and last chapters detailing his own experience of being dyslexic, gay and depressed—and then how he decides to become a father. His beautifully written and compassionate words will make you think differently about yourself and others. This is one of those rare books that makes readers want to be better people.
Andrew Solomon, an award-winning writer and seasoned journalist, was kind enough to answer my questions about Far from the Tree. Forget all of the stuff I just wrote above and read his take on his seminal work that took him 10 years to write:
KK: This book is about extraordinary children and how their mostly ordinary parents dealt with them. What message does the book send to the average parent and child?
AS: All parents look at their children with some measure of bewilderment at some point; I have yet to meet a parent who has not occasionally asked her child, “Where did you come from?” My book is about families dealing with extreme forms of difference, but much as we test flame-retardant fabrics in an inferno to make sure they’ll hold up when a child leans over the stove, so looking at how parents negotiate these more extreme situations may help all parents to deal with the qualities in their children that they find alien and alienating. All parenting involves negotiating all the book’s fundamental questions. How does one decide in what measure to change one’s child, and how much does one strive to accept him or her? How does one steer between intrusiveness and neglect? Difference is what unites us; most families are negotiating difference in one form or another. The individual differences feel isolating, but if one makes common cause with people confronting all kinds of difference, then one progresses from being in a lonely minority to being in an embracing majority. And that is a message that should be reassuring and meaningful to all parents, to everyone who has sometimes wondered where her child came from.
KK: This book is quite long, but I want to implore parents to read it entirely. Why was it important to give each section so much depth? Why should parents stick with it?
AS: The book was actually more than twice this length in its first draft! Each chapter poses a separate question, and I think the whole adds up to more than the sum of its parts. I wanted to identify what all these situations have in common, but I also wanted to explore the very specific experiences to be found in each. I wanted to show how parents can rise to the occasion of difficult love, over and over again, to show how deep the love of parents can be and how elastic their attachments are. That’s the book’s larger message, and in order to convey it, I had to look at how parents had coped with very diffuse kinds of challenges. So, for example, the chapter on the deaf examines what it means to have a child whose syndrome may be surgically corrected, a child who might have membership in a rich culture that is foreign to his parents. The chapter on dwarfs looks at how hard it is for both parent and child to negotiate ridicule. The chapter on autism looks at the often-tragic consequences of dehumanizing people who are affected by such a syndrome. Looking at prodigies, I explore how it is difference itself, and not the question of “positive” difference or “negative” difference that is at issue; a genius can be just as hard to care for as someone with severe disabilities. The chapter on rape posits that the difficulty of loving a child who is outside the norm may inhere not only in his DNA, but also in where he comes from; the chapter on crime examines the way what your child does can damage your feeling of integrity as a parent, and looks at the unproductive culture of blame. The chapter on people who are trans is about the power of irrational hatred, and about how one can transcend even the most acute discomfort. The whole thing is framed by my experience as the gay child of straight parents, at the start, and my decision to become a parent at the end. I suppose if I were asked to offer the most convincing argument for reading the whole book, it would be that researching the whole book is what gave me the courage to become a parent myself. These stories of difficulty might have frightened someone off, but for me, they are stories of how various experience conforms to a single transcendent reality—which is to say that I thought that if all these parents could love all these children, I could love whatever child I was given. And I don’t think you can learn that from reading a single chapter; I think it’s a larger message. That said, I understand that some people will read only the chapter that applies to themselves, and I think there’s plenty there for each of them.
KK: If there is one section every parent should definitely read, which would you recommend?
AS: I think the first chapter, Son, is the most dense, and has the least anecdote in it, but it lays out the book’s larger arguments, so my rather boring advice would be to start with the beginning. If you’re going to skip around, choose any one of the ten chapters that follow, and then read the last chapter, Father, because the journey from the first chapter to the last is not only my personal maturation, but also a narrative of how to transcend prejudice in general, and how to construct meaning out of pain (without denying the existence of the pain itself)—and that’s what I’d like people to take from the book.
KK: Can you sum up what you personally learned from researching and writing this book in just a few sentences? (Is that possible?)
AS: Many people wondered to me why the parents I met said that they loved having the children they had—that they would have loved to make their children’s lives easier, but that they didn’t regret having produced these children, and at first that puzzled me. Then I realized that all of us have flawed children whom we love, and while we might want to fix the flaws, we wouldn’t want to exchange them for other, better, unflawed children. And that the ability to love one’s children with their flaws is the center of what it means to be a good parent—and to be a joyful parent, too.
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Andrew Solomon, autistic, born of rape, criminal, deaf, Down Syndrome, dwarf, Far From the Tree, gay, identity, parenting, prodigy, schizophrenic, severely disabled, transgender | Categories:
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