Let me tell you about a child….
Some might call her difficult. Others might call her spirited or spoiled.
Obnoxious. Annoying. Bratty. Bossy. Controlling. Hyper-sensitive. Lazy. Rude. Antisocial. Manipulative.
Unmanageable. Undisciplined. Uncooperative. Unlikeable.
Her poor family...
Two stories are often told at family gatherings to describe this young, incorrigible child. They both involve an extreme dislike of clothing. First, as a toddler, she stripped in the local mall and refused to allow her mother to put the clothes back on. After much screaming and many tears and some not-so-approving looks from fellow shoppers, her mother had to drag her out of the mall and go home. Second, one day, at around age four, she refused to put on clothes ever again. After her mother reached her wit’s end, the child was taken naked to her father’s office and the secretary bribed her to get dressed (minimally) with sugar cubes.
This child hated clothes. They poked and constricted and the seams itched. She hated wearing shoes. Shopping for closed in tennis shoes was traumatic. (For everyone.) She did not like socks or underwear. If she had to wear them, she wore them inside out. Her year-round wardrobe was a favorite dress (or two) and sandals. People knew her as the little girl who always wore the same two dresses. (“What was wrong with her parents?” they must have asked themselves.)
This child was identified early on as “gifted and talented,” but she frustrated her teachers by not staying on task or following directions. She even bit someone in preschool. And though she did like to bite things, she usually would not try new foods. She had her favorite few and stuck to them. Threats didn’t work. She just went hungry. It didn’t even matter if it was something as yummy as ice cream. If it wasn’t vanilla and orange sherbet, she didn’t want it.
In the summer, her family sometimes had dinners on the patio picnic table with the setting sun in the background. She would get a terrible headache about the time she should be doing dishes. If her parents rearranged the furniture, she would become frustrated and angry and hibernate in her room. Repainting? Redecorating? New blinds? A new lamp? These simple things took her weeks to adjust to.
Getting her to sleep was a chore. She sucked her thumb (till she was eight). And she had to have a special blanket, night light and music. Spending the night at Grandma’s house? Tried and failed. It smelled weird. It didn’t feel right. The lighting was strange. Sleepovers with friends? Not an option.
In fact, just having friends was a challenge. She had a very specific idea of how things should be and wasn’t particularly flexible. (Just FYI, flexibility is important for getting along with others.) There were friends, but often bitter, fracturing arguments.
Let me tell you…this child was often not pleasant to be around.
This child is me.
This is the image I have of myself as a child. For years, after becoming an adult, I thought I was a terrible, horrible brat. I felt sorry for my family for having to deal with a kid who was so obnoxious. I was ashamed for the feelings and behaviors of my childhood. Frankly, I was afraid to have children of my own because they might be as terrible as I was. And then, in my job as a pediatric speech-language pathologist, I discovered Sensory Integration and Carol Stock Kranowitz’s book, The Out of Sync Child which begins by describing four children with Sensory Processing Disorder.
“Wait…THIS is me!” I thought to myself after reading one of the profiles. This was my childhood. What I felt for all of those years was something real. I wasn’t just obnoxious! There was a reason behind some of my terrible behavior. And I wasn’t just making up those headaches to get out of doing the dishes!
According to the Sensory Processing Foundation (www.spdfoundation.net), Sensory Integration, or Sensory Processing is “a term that refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses.” Sensory Processing Disorder (SPD, formerly known as "sensory integration dysfunction") is a condition that exists when sensory signals don't get organized into appropriate responses.
This lack of organized responses can result in a variety of behaviors including hyper or hypo sensitivity to touch, taste, sound, smell, vestibular and visual input. Some people seek sensory input because it helps them feel better (e.g. swinging, bouncing, or jumping). Some people avoid sensory input because it is disrupting to them or uncomfortable. The effects can be varied, including a sense of uneasiness or over-whelm, decreased attention and concentration, physical responses such as headaches, nausea, dizziness or bowel disruptions.
When I was a child, my family became resigned to my idiosyncrasies and for the most part, learned to cope with my limited wardrobe and diet, my frustration with change, my sleep routine, my intolerance of florescent light and the setting sun, my difficulty settling in new places and my inflexibility (just to name a few). I’m sure that people judged my parents at times and they probably pitied my two older siblings and wondered what on Earth I would grow up to be like. Well, through the years, on my own, I learned to cope too.
Now, this is me…in my adulthood with Sensory Processing Disorder. For over 20 years, I have been a successful wife and speech-language pathologist. I participate in society. I travel. I have friends. I have a varied diet and will even try new foods. Most people don’t even know that I still have SPD. I think that is because as I aged, I seemed to become less sensitive to some things. Also, as I became more in control of my environment, I naturally made adjustments to compensate for my sensitivities.
Overall, I have learned to temper my high expectations and particular ideas on how something should be done with the reality of life. As a result, I have become much more tolerant and flexible. It helps me to briefly think through my expectations of a situation ahead of time and imagine the perfect scenario. Then I mentally take a step back and anticipate something more realistic because life is imperfect and the only thing we can count on is that things will usually not turn out the way we expect them to.
I wear clothes. I like clothes. I really like clothes! But, some clothes still drive me crazy. I feel the seams. I found underwear that is seamless and discovered that if I give myself a chance to get distracted with life, sometimes I no longer notice the seams in socks, pants or shirts. But occasionally, after I’ve worn it a few times, a shirt just has to go because there is something in the seams that I simply cannot ignore. I still hate layering clothes. It makes me claustrophobic. And, I still prefer sandals and bare feet, but when I need to wear them, I can wear socks and closed in shoes. I still feel the seams in the socks, but usually I get used to them after a few minutes.
I don’t rearrange my house. Dismantling my personal spaces in my home for cleaning or repair causes a strong physical uneasiness that only goes away when things are reassembled. That means we try not to start a project in the bedroom unless it can be completely finished before I have to sleep in it again. New furniture takes several weeks for me to feel comfortable around even if I picked it out and placed it myself. In general, my home is decorated simply, in colors and with lighting that is comfortable for me. No striped walls, no patterned wall paper and lots of symmetry.
My dear husband is tolerant of my sensitivity to music and light. He knows that Vegas is not the place to plan a vacation. I’ve been there, and it makes me physically ill after two days. Occasionally, I cannot spend time in an office or someone’s home because the lighting makes me sick. It usually starts with a sense of uneasiness and eventually turns into a headache, dizziness and stomach upset. I don’t usually discuss it. Most people would not understand it. It sounds ridiculous. Heck, I don’t even understand it, but, it is what it is. Often, I try to accommodate by changing where I am sitting or by adjusting the lights if possible. Sometimes this works, but if not, I just have to escape. That is literally what it feels like to me…an escape. When I leave a “trigger” situation the relief is almost immediate…as if you were listening to painfully loud music and someone suddenly turned it off.
As a grown-up who grew up with Sensory Processing Disorder, my hope is that by sharing my experience, I might help everyone to understand SPD a bit more. SPD does not automatically mean someone falls within the Autism spectrum. SPD does not mean you cannot be successful in school and life. SPD just means that you process the sensory input of life a little differently and you might need to make some accommodations. Parenting a child with SPD can be a challenge. Living with and loving someone with SPD can be a challenge, but learning to not take their behaviors personally and accepting that many of their quirks spring from legitimate feelings can help.
The debate over the legitimacy of SPD rages on with renewed vigor. I have lived with my body for 45 years. I can promise you that the way I experience some sensory input is different than the way other people experience it. I cannot tell you if that means that something is neurologically different in my body. Frankly, I do not care. Over the years, some sensations became less intense, some feelings I began to anticipate and deal with in a more productive way. Also, as an adult, I have much more control over what I must encounter and how it happens. I did not have years of therapy to over-come my challenges. Knowing more about what we were dealing with might have helped me and my family. And certainly, having some coping strategies would have made life easier for all of us.
Looking back at that little girl, she was frustrating and challenging, yes, but also sensitive, playful, creative, intelligent, energetic, and loving. She had a future of helping people that in some ways grew from the challenges she faced--challenges that just happened to include SPD.
© Connie Hunt 2014
Here are just a few of the many resources available now:http://www.spdfoundation.net/index.html
The Out-of-Sync Child: Recognizing and Coping with Sensory Processing Disorder by Kranowitz
Growing an In-Sync Child: Simple, Fun Activities to Help Every Child Develop, Learn, and Grow by Kranowitz and Newman
Building Bridges Though Sensory Integration by Yack, Aquilla and Sutton