The Out-of-Sync Child Grows Up

Erik, a loose-and-floppy 14-year-old, is not a self-starter, a joiner, a player, or a conversationalist. He’s smart but doesn’t seem tuned in to other people or his surroundings.  He seems interested only in his cell phone.  His parents are concerned about Erik’s “can’t-do spirit.”

Marlene, 19, is a brilliant, very thin college student, perpetually hunched over, gripping her elbows, and frequently tripping on air.  Family, friends, and faculty consider her shy, nervous, awkward, and quirky.

Caleb, 23, enjoys his first job at a public policy organization, although sitting at a desk feels like torture. Given a chance, he’ll jump up, energetically rock on his toes, pluck at your sleeve, and talk your ear off about climate change.  On weekends, he joins other young men for dare-devilish mountain climbing adventures.

Is Erik cognitively impaired?  Is Marlene anorexic and suffering from an anxiety disorder?  Does Caleb have ADHD?  Or do they all have types of Sensory Processing Disorder (SPD)?

SPD is a common — yet commonly misunderstood — neurological condition.  It occurs in the central nervous system when one’s brain can’t react typically to sensory messages, coming from one’s body and environment, in order to function smoothly in daily life.  The most appropriate treatment is occupational therapy using a sensory integration approach (OT-SI).

Fortunately, public awareness is expanding about children with SPD.  To help them overcome this “disabilitating” disorder, preschoolers and elementary school-age kids are finally getting attention and appropriate treatment.

Without recognition or treatment, however, young adults may struggle to lead a successful, satisfying life. Often, they have not grown out of SPD; they have grown into it, seeking comfort and satisfaction in their confusing, irritating, or insufficiently stimulating world.

   Erik has sensory under-responsivity, a type of SPD causing the “sensory disregarder” to show slow or little reaction to stimuli.  Marlene has sensory over-responsivity that causes the “sensory avoider” to shrink from stimuli such as certain food textures or flavors.  She is also a “sensory slumper” with postural issues that make it hard to stand tall and stabilize her body.  Caleb is a “sensory craver,” seeking certain sensations longer and more intensely than others. 

 They are not alone.  Since The Out-of-Sync Child, my first book in the “Sync” series, was published in 1998, I have sought to reassure similar young people and their parents that they are not alone, that they can learn new strategies, that other individuals and families have learned to cope and improve their lives, and that the future is full of hope.

While writing The Out-of-Sync Child Grows Up, I turned to teenagers and young adults who are living with SPD.  They are the true authorities and best teachers.

  “People need to know that if one thing hurts, it all hurts,” says Kevin Larson, 15. “So if someone with SPD says something’s bothering them, take it seriously. If it isn’t fixed, it will get worse and worse and worse.”

Ember Walker, an adult looking back, says, “When I was growing up, eating was never pleasant. I abhorred anything remotely spicy, disliked candy passionately, and usually avoided crispy, sweet, cold, and fizzy things. I do not “do” flavor in foods. Savory things are my enemy and can make me nuts.”

But having SPD is not all bad. Despite — or because of — sensory issues, many young people with SPD consider themselves winners rather than losers.  They develop what I call “extrasensory grace.” I coined this expression to name the intrinsic, elegant, spirited, especially gifted talent or quality that comes from within. Extrasensory grace arrives when individuals with SPD learn to love their quirky selves and discover what they are meant to do and do well.                                                                                                                                     SPD advocate Rachel S. Schneider, diagnosed in her 20s, says, “I think some of that extrasensory grace is learning to love the you that you were assigned, wiring and all.  We need to reach the point where we can say, ‘Yes, X challenges me. Yes, I’m not strong in Y. But I am just incredible at Z.’”

Jason Fisch, 14, has developed sensational compassion.  He says,  “With a very supportive, loving family, and therapies of all sorts, I have learned that my SPD has been a gift. I have learned to be compassionate. I have learned that all other kids would react the same way I would to some situations. They would be hurt if kids were picking on them. They would feel left out if they weren’t invited to a party. If I don’t want to feel that way, why would anybody else? I help other people cope with their problems and insecurities because I have already felt those feelings, maybe even a little stronger. In the end, all the hard work pays off.” 

Ways to support your child with SPD:

• Go to spdstar.org to learn about the research, therapies, and education centers at Denver’s STAR Institute for Sensory Processing Disorder.  The website offers a registry of occupational therapists and others serving children and families, as well as information about local support groups.
• Find an occupational therapist who uses a sensory integration approach (OT-SI), such as Cara Koscinski, OTR/L.  Here in Pittsburgh, Cara treats children with SPD, autism, and other developmental issues. Her popular books and Pittsburgh Parent articles help kids with special needs.            pocketot.com
• Banish junk food and serve real food without preservatives or additives.
• Send your children outdoors to interact with the sensory-rich, 3-D world. Biking and hiking, planting and raking, swimming and ball sports are ideal “In-Sync” activities to develop and enhance sensory-motor abilities.

With growing self-awareness and diligent practice to achieve one’s goals, along with an attentive family, effective treatment, and public awareness, adolescents and young adults with SPD can develop the abilities to function smoothly and successfully in life.  Onward!

Carol Stock Kranowitz, M.A., a former teacher, is the author of The Out-of-Sync Child, The Out-of-Sync Child Has Fun, and The Goodenoughs Get In Sync (illustrated storybook).  She is the co-author with Joye Newman of Growing an In-Sync Child and In-Sync Activity Cards, and she guided her grandson, Asher Kranowitz, in his sensory-rich alphabet book for kids,  Absolutely No Dogs Allowed!   Carol’s new book is The Out-of-Sync Child Grows Up: Coping with SPD in the Adolescent and Young Adult Years.