By Carol Stock Kranowitz
At recess, Emma, 9, refuses to participate in jump-rope or four-square games. Emma is over-responsive to movement sensations, which terrify her. She tells her friends, “I’m no good at that.”
At the front door, Aiden, 10, waits for his mother to tie his shoelaces. He has dyspraxia, and sequencing the actions to dress himself is still hard. “Today, you try it!” she says hopefully. He scowls and growls, “No, not today.”
At dinner, Carlos, 12, gulps down a sizzling French fry, whole, because he has difficulty discriminating where in his mouth the food lies and whether it is safe to swallow. He gags and spits it out. His father rages, and Carlos screams, “I hate you!”
These “out-of-sync” tweens have sensory processing disorder (SPD), a common – yet commonly misunderstood – neurological condition. It occurs in the central nervous system when one’s brain reacts atypically to sensations, such as movement and touch, that come from one’s body and surroundings. SPD affects feelings, learning and interactions with others and the environment.
Rearing children with this “disabilitating” disorder can be exhausting, as keeping them safe, clothed and fed absorbs 100 percent of parents’ energy and time. This 24/7 job is also emotionally fraught, as the child’s fear, anger and hostility often trigger similar feelings in their parents.
Shame and guilt – less visible and audible but equally intense emotions – may underlie behavior and may escalate as children mature. Several contributors to my book about growing up with SPD describe their shame for worrying, frustrating and enraging their parents, teachers and peers. Teenagers may be ashamed of their perceived weakness and inadequacy. They wonder, “If other people tolerate noise, odors, escalators and collars, if other people keep calm in stimulating situations, why can’t I?”
Kevin Larson, 15, says, “My family can’t go to noisy restaurants, we have to follow a semi-predictable schedule, and whenever I get overwhelmed, we all have to leave. It’s not fair to everybody else, but I can’t help myself. It makes me feel as though I’ve let them down. The worst thing is when I go into sensory overload. It’s embarrassing because it’s always where other people are. It makes me angry because I lose control of my emotions, and sad because I end up hanging around with adults when I really want to hang around with other teens. I want them to like to hang around with me.”
Guilt, like shame, echoes through many contributors’ stories. While guilt has its purpose, rebuking us for our voluntary, hurtful behavior, many adolescents with SPD often feel guilt for their involuntary behavior. Inefficient motor coordination and limited conversational skills, for instance, are not their fault but can make them believe they are doing something – or everything – wrong.
Chloe Rothschild, 18, says, “Combine my numerous sensory sensitivities with social anxiety and just not knowing what to say, and it can be a nightmare. When people try to help by talking to me, this makes my overload worse.
“Write it down, and allow me to do the same. If I say I need a minute or two, give me time and don’t rush me. Don’t punish me for needing a break; I am punished enough by my guilty and overloaded feelings. Listen to me, and never doubt what I tell you about my feelings. Don’t laugh them off like they are no big deal, as they are a big deal to me.”
Despite, or because of, sensory issues, many teens with SPD consider themselves winners rather than losers. They develop what I call “extrasensory grace,” an 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.
Karly Koop, 18, for whom “simple things like walking, kneeling and jumping don’t come easy,” has come far because of her determination to overcome sensory challenges. She says, “One really cool thing about my motor and visual difficulties is that I ‘see’ things differently. For instance, I taught a little neighbor to ride her bike. I told her to let her back touch the trainer bar behind her seat. She did that and took off riding on her own! Nobody else saw that bar as anything but a handle for the adult to hold, but it made sense to me to use it to get sensory input to help her balance.”
Pride is now Karly’s dominant emotion. “Being out of sync with the world isn’t so bad. In fact, I think it’s a blessing – it’s what makes me … me. I like the way I am. I appreciate that my uniqueness can help other kids. I’m excited to see how I can use this gift to make a difference for other people.”
Learning about SPD and becoming more effective in one’s daily doings is possible at any age. Some suggestions:
* Read about the research, therapies and education centers at Denver’s STAR Institute for Sensory Processing Disorder. The website offers copious information to help children and families; spdstar.org.
* Find an occupational therapist using a sensory integration approach (OT-SI) at clinics like OTA-The Koomar Center in Newton; otathekoomarcenter.com.
* Develop a sensory family lifestyle by eating wisely, sleeping enough and going outdoors to interact with the natural, 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.
* Educate everyone in the family, schools, and neighborhood about SPD and its impact on growing children’s learning, behavior, emotions and relationships.
With self-awareness and diligent practice to achieve one’s goals, along with an attuned family, effective treatment, and public awareness, adolescents with SPD can develop the abilities to function proudly 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.