Spelling Love with an X: A Mother, A Son, and the Gene that Binds Themby Clare Dunsford
Now in his twenties, Clare Dunsford's adult son, J.P., was diagnosed with fragile X syndrome at age seven. The most common inherited form of mental retardation, fragile X affects the lives of more than a million people in the United States, including those with the full mutation, their families, and treatment professionals. Unlike autism or Down syndrome, fragile X… See more details below
Now in his twenties, Clare Dunsford's adult son, J.P., was diagnosed with fragile X syndrome at age seven. The most common inherited form of mental retardation, fragile X affects the lives of more than a million people in the United States, including those with the full mutation, their families, and treatment professionals. Unlike autism or Down syndrome, fragile X does not strike like a bolt of lightning, leaving its mark on just one person; it spreads throughout a family like a tidal wave. When a child is diagnosed with fragile X, a mother faces the devastating fact that she carries the premutation and has unwittingly passed on the condition. When Dunsford first shared the news about J.P., three of her siblings soon found that they carried the premutation as well, and some had already had children-so three of J.P.'s cousins also live with the cognitive and social challenges of fragile X. Such a family must, Dunsford writes in her poignant, gripping account, "reexamine its past and reassess its future."
Spelling Love with an X is the first personal memoir about living with fragile X and a reflection on the fragility of human identity in the age of the gene. Recalling the psychic wound of learning that she is genetically "flawed," Dunsford wonders: What do you do when you discover that you are not who you thought you were? How do you tell your parents and siblings that they, too, might be implicated in your disaster? How do you make sense of a life interrupted, cast in a different light? How do you hold the sorrow and joy of a special motherhood in balance? Must we rewrite the old lines with a new (genetic) alphabet?
A scholar by nature and training, Dunsford draws on poetry and science to reflect on her life with J.P. and to illuminate his metaphoric way of communicating. Funny and touching stories show J.P.'s impressive verbal dexterity, not uncommon in those with fragile X, and his lovable cheeky streak. Eloquent and intimate, Spelling Love with an X reveals the disarming insights of a compassionate scholar on literature, genetic inheritance, and motherhood, and tells the story of a boy who is proud to be "just who I am."
From the Hardcover edition.
- Beacon Press
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As a parent of a son with Fragile X who is a couple of years younger than Ms. Dunsford's son, J.P., I can tell you we've experienced all the lows and the highs she writes of. Her story is beautifully written and shines with the love we have and hope we need for the future for our adult children. She is able to describe the charming, witty character of her son in a way that rings true for parents of children with Fragile X. It's her own story as well. Life as a carrier of Fragile X has its own challenges ¿ ones you might believe are your own character faults until you find out, at whatever age, that you are a carrier ¿ and that the battles you've fought during your life are the result of a genetic defect you were born with. Parents, carriers, friends should read this book to get a good look at life with Fragile X.
This book was given to me for Christmas and I read it from cover to cover in two days. That is no small feat when you are the parent of an adorable, though, ever-so-slightly hyperactive, 4 year old boy with Fragile X. Most days I barely have time to think much less sit and read! It's now being passed around amongst family and friends. In our lives we talk a great deal about the mechanics of living with a special needs child. We talk about what types of therapy and how much therapy. We talk about the 'tricks' we use to help him get through the day as smoothly as possible. We even talk about planning for the day when we won't be around. What we don't talk about is the grief and the guilt and the feeling that the future seems to be made of shifting sands and not the granite we had always thought. This book brought the emotions to the surface and gave us, as a family, a chance to really dig deeper and talk about the things we'd been keeping buried. What an amazing gift!
Raising a child with disabilities is a unique experience for each family, however as a parent of a young man with fragile x, I could certainly relate to the stories relayed in this book. The author allows us to share the experiences with her son as they both travel this journey, which can be both difficult and uplifting. I recommend this not just to those with fragile x syndrome in their families, but to anyone dealing with the issues the world of disabilities exposes us to.
I enjoyed reading Clare's journey through time before and after the birth of her son, P.J. Her words were written with true honesty,emotion,love and sorrow. It opens a door to the difficult tasks of caring for a child with disabilities but also tells a story of the importance of gratitude that we all can practice in daily life.
This book was sooooo depressing and gives little to no hope to parents of kids with fx. Spend your money on thrapy for your child instead! yes, genetic disorders suck, but give some hope to the families there are plenty of wonderful moments too!