Posted on 21 October 2014.
October is National Sensory Awareness Month. As part of this national education effort, Inside Bainbridge is publishing a series on Sensory Processing Disorder (SPD), citing the latest research, information from experts in the field, and personal stories from parents, caregivers, and kids affected by the condition. (Family names have been changed for privacy.) Read the other articles in the series:
Processing sensory information—we all do it all the time. We’re built for it to survive. And we all have strengths and weaknesses when it comes to “reading the world” through our sensory bodies.
Some of us are better at mapping—knowing how to navigate without getting lost, in the mall, the woods, the city. Some of us are good at reading the emotions of others—picking up on a range of cues, like tone of voice, body language, and tracking the typical vs. atypical behavior of people we know to detect their emotional states. Others of us specialize in noticing visual details, and we learn best and remember the most through our eyes. The list goes on.
Our Senses Working Over Time
In a world of 7 billion people, with cultures mixing; traditions shifting; technology and social media reinventing our lives by the day; increasing light and noise “pollution” in our work spaces, shopping centers, streets, neighborhoods, and homes; our senses are on overload. Places and time for quiet reflection have become, quite suddenly, rarities.
With increasing cultural and economic globalization, we have more to learn and more to “process” than ever. As a result, we are getting married later, having kids later—growing up later—because we need more time.
This Is Not a Problem with Kids; It’s the World They’re Being Born Into
As I talked with parents, young people, and caregivers dealing with “sensory processing disorder,” one message was clear: This is not a problem with kids. This is about the world that has risen up around us and that our kids are being born into.
Kids on computer.
Sue Steindorf worked as a physical therapist at Seattle Children’s and then for 20 years in the public school system on Bainbridge Island, helping kids with “special needs.” She said that in the final five years of her tenure in the school district, there was an explosion of “sensory different” kids.
Seeking a better way to help this rising tide of young people, who were getting sidelined in the underfunded schools, to her surprise she found herself getting involved with yoga. She earned her certification as a yoga instructor and found that she could help her sensory kids better that way. She has spent the last five years helping kids and adults through her yoga practice at The Island Yoga Space. She has found that through yoga she can bring kids to “center, help them learn to self-calm, and find their balance and potential.”
When I approached Steindorf to talk about her work with sensory processing “disorder” kids, she kicked off the conversation by saying, “print what you need to, but I’m ready to go radical here, and I don’t care what people think about it.” I had hoped she would bare her thoughts, because, having talked with her before, I knew that Steindorf has a lot to say that I think needs to be heard.
“I See It as a Very Rapid Divine Evolution”
“Personally I see it as a very rapid divine evolution. I don’t see it as a negative epidemic. These kids can’t function in an out-of balance-world, and they are teaching the rest of us to tune into ourselves and find the balance in our own lives that so many of us have lost,” said Steindorf.
Steindorf believes the schools are out of step with this reality, still viewing sensory-different kids as “challenges” in the classroom rather than in their own way teachers for the rest of us. She sees this as symptomatic of the lack of resources plaguing our educational system. Speaking of “special needs” kids in general, she said, “First we shut them away in institutions, then we segregated them in “special” classes, and now we are trying to “manage” them in our classrooms. What we need to do is embrace what they have to show us and integrate them fully, changing our way of teaching.”
Catherine Whiting, an occupational therapist for 27 years, echoes Steindorf’s sentiment. Whiting sees everyone on a sensory spectrum and finds that even kids who aren’t labeled with sensory processing disorder benefit from strategies that help her SPD kids: “What usually helps some, usually helps most,” she told me.
“Each Child Is So Individual . . . There Is No One Answer”
Like Steindorf, Whiting has adapted to meet the needs of the kids she helps. In addition to having a BA and Masters as a pediatric OT, she has gone on over the years to earn certifications in sensory integration theory and practice, neurodevelopmental therapy, yoga therapy for special needs kids, and aroma therapy. Whiting said that because “each child is so individual . . . there is no one answer, and it’s better to work with a big palette.”
Guy with big coffee.
When I asked her what she says to parents, grandparents, or other adults who are dismissive of SPD, she chuckled and said, “Well, I ask them, ‘What did you do today? Did you have your coffee? Did you pace and bounce your ball in your office? Did you take a power walk at lunch, or a nap? Did you have your glass of wine when you got home?” Whiting points out that adults have coping mechanisms that get them through the day; whereas kids are at the mercy of the activities and schedules adults create for them.
“The Sensory Seekers Need Their Cups Filled All the Time”
“The sensory seekers need their cups filled all the time,” said Whiting, pointing out that unless they are accommodated at school and home, they will find their own ways to fill their cups. “As adults they can be very creative, energetic, and contribute a lot.” She cited gold medalist swimmer Michael Phelps as an example. His mother has said about her son that he had a craving for movement and needed structure, so she helped him make swimming his outlet.
Their Test Results Run the Gamut From Retarded to Genius
Bainbridge Island mom, Diane, has two teenage boys who have both been diagnosed with SPD, as well as high-functioning autism. They both have had test results that run the gamut from retarded to genius levels. Not surprisingly, Diane has found her parenting journey exasperating, to put it mildly. Seeking understanding for her sons as they navigate through the educational system, she has learned a lot and reached many of the same conclusions Steindorf articulates.
Brown pelicans at Grand Isle, Louisiana, following the 2010 BP oil spill in the Gulf.
“They Are Labelled Oversensitive Because They Are Incapable of Tolerating the Disaster of Our Environment”
Diane sees her sons and other kids with SPD and other “special needs” labels as part of an adaptive evolution of our species. “They’re overly sensitive to input that is bad for all of us. They find a shirt made of poisonous chemicals physically intolerable because it is actually harmful and should be intolerable to all of us. They are labelled oversensitive because they are incapable of tolerating the disaster of our environment.”
“They Are Leading Us Toward Authenticity”
Diane isn’t just talking about our physical environment. She notes that her sons simply don’t compute socially institutionalized lies or injustices. “They are leading us toward authenticity, away from the false social niceties and bull**** of our culture that teach us we are all separate when we’re actually all connected, that make us feel safe when we’re not, that tell us we need to buy useless products to be happy. ”
Then noblest pleasure is the joy of understanding.
About the educational system, Diane says, “It doesn’t fit deep-thinking kids. . . . They don’t have anything real to dig into with learning.” She sees a new generation of kids who are often mistaken for oppositional: “They’re not rebelling; they’re about innovation and about leaving things behind that don’t work.”
“They Need to Know that the System Telling Them They’re Wrong Is Okay to Walk Away From”
Looking back, Diane wishes she could do some things differently as a parent: “I’ve watched my kids suffer enormously. In some ways I missed the boat. What I need to do is affirm their awareness and sensitivity.” She added, “They need to know that the system telling them they’re wrong is okay to walk away from.”
Parents of SPD kids often reach a deeper self-understanding through their experience advocating for their children. Jen, who has a sensory-avoiding child, sees herself reflected in her daughter, putting the pieces together about her own struggles growing up in a sensory-assaulting world. “I realize now that, like my daughter, I’ve always been a sensory-avoiding person. Both of my parents had similar issues too, but they hated those aspects of themselves and, seeing it mirrored in me, projected that self-loathing onto me,” said Jen.
“Through My Love for My Child, I’m Learning to Accept Myself”
“Through my love for my child, I’m learning to accept myself and understand problems I struggled with as a kid and younger adult—hating school, avoiding groups, developing a phobia of public speaking.”
Jen said those issues haven’t all gone away, but over time she has learned coping strategies to help herself. She’s trying to teach those strategies to her daughter now. “It’s been extremely painful but also cathartic and healing. I now see that some of the best things about each of us come from our highly sensitive natures, and I’m proud of who we both are.”
Read the next article in this series: Sensory Processing “Disorder” Part 4: Treating It.
[This article from the archives originally appeared on Inside Bainbridge October 31, 2011.]
Photos courtesy of James Cridland, Erik (HASH) Hersman, Susan DeMark, Mykl Roventine, and eyeliam.