A new book focuses on how "out of sync" teens and young adults—and their caregivers—can cope with Sensory Processing Disorder.
Kids who are "out-of-sync" with the world due to Sensory Processing Disorder (SPD) struggle with a variety of sensory and motor challenges, but we can help them through simple routines and consistent activities. I've learned this from everyday experiences with my own autistic son (SPD and autism often go hand-in-hand), as well as through conversations with educator and writer Carol Kranowitz, who has helped parents and professionals better understand SPD for years with her popular books about the disorder, including The Out-of-Sync-Child.
As my son and other special needs kids get older, though, new SPD challenges will present themselves. These older children and young adults are the focus of Kranowitz's new book, The Out-of-Sync Child Grows Up: Coping with Sensory Processing Disorder in the Adolescent and Young Adult Years. This book offers many tips and activity ideas, as well as anecdotes, insights, and advice from autistic self-advocates—including one of my favorite autistic writers, Lydia Wayman—and stories from older kids and adults with SPD are woven among writings from professionals and parents.
The Out-of-Sync Child Grows Up would be a great read for parents of autistic kids who are on the cusp of adolescence, for tweens and teens with SPD or other sensory challenges, for professionals who work with neurodiverse kids (of any age), and for anyone who'd like to learn a bit more about how having a different neurology influences every aspect of daily living.
I caught up with Kranowitz to ask her what she hopes readers take away from her new book.
JP: How is this book different from your others?
CK: The stories that flavor my other books all came from my head. In this book, the poignant, potent stories come from real people who are living with SPD. Their stories are all about how it feels to have SPD—how it feels physically, in the skin, in the muscles and joints, in the inner ear, in the mouth, and so forth—and how it feels emotionally to be experiencing those physical reactions to sensations. For instance, one writer tells us that sounds are so physically painful that he simply can't spend time with people he loves, and that isolation is the most painful part.
Another difference is that I came up with chapter topics for my other books, but for this one, the contributors' stories determined the topics. I didn't ask specific questions; instead, I asked the writers to write from the heart about what they really need the world to know. What they chose to write about surprised me. Many wrote about the same topics, and three of these topics totally surprised me: Their shame for having a condition that impacted their people; their difficulty in getting out of the house; and the agony of going to the shopping mall. Some of my planned chapters went out the window, such as coping with hormonal changes, job interviews, and academic challenges, because nobody discussed these topics.
What do you hope readers take away from the book?
I think readers will take away a sense of what I call "extrasensory grace" and will be inspired to make changes in their own lives after reading some of the stories.
I also hope they learn that SPD is real. It is physical. People who don't have it—or who don't live with, care for, teach, or coach someone who does—must learn about this common condition. Once they understand it, they will change their attitude about individuals with sensory challenges. It's human nature to be down on a subject one is not up on, so my hope is that after reading and absorbing this book, newbies to SPD will be able to help individuals with sensory issues, rather than disdain or scold or abuse them.
SPD affects all kinds of people, with and without autism. Most of the writers don't have autism. (Out of 50, 15 are on the spectrum.) Many are what Rachel Schneider calls "pure sensory." I want readers to get this point: that "ordinary" people with sensory challenges are all around us.
You included so many other voices, like those of autistic writers and others with SPD, in the book. Some of these stories deeply touched me, and others helped me better understand my own child's challenges. They highlight the fact that, in any conversation about autism, SPD, or other disabilities, we MUST include the voices of those with the disability—not just their family, friends, and therapists. What do you think that adds to the book?
Parents, teachers, and teenagers have been asking for a book about kids growing up ever since The Out-of-Sync Child came out in 1998. But who was going to write it? There's too much to say—so many factors affect how each person develops; the psychological aspects of growing up with SPD are complex. I felt that I lacked the expertise because I don't have SPD, no one in my family has SPD, I'm not a therapist, and my teaching experience is with the little guys. Yet... it had to be written. Thus, I decided to go to the primary sources. I sent out the word into SPD-land and gathered these writers. Truly, I couldn't—and I wouldn't—have been able to put the book together without them.
Jamie Pacton writes middle grade and young adult fiction, drinks loads of coffee, dreams of sailing, and enjoys each day with her husband and two sons. Find her at www.jamiepacton.com, Facebook, and Twitter @jamiepacton.