Hope was upset I wouldn’t take off her swim vest. She was upset she had to get out of the pool. She was upset that it was taking too long to get changed back into her dry clothes. All of that explains why she was crying, but it was the stone saw two doors down at a house under construction that had her squirming out of her skin as she scanned the yard with frantic, wide eyes, insisting that I hurry up and dress her so she could get to safety. (She was safe, I promise.)
Sometimes it’s the lawn mower next door or the edger in the yard behind us, but on this particular day it was the stone saw. That screeching metal sound that carries through the air, even our recent air that has been thick and hazy from the Canadian wildfire smoke plaguing the East Coast on and off since June.
What Is SPD and What Does It Look Like?
Hope has something called Sensory Processing Disorder (SPD), which is unrecognized in the DSM-5 but as real as the air in my lungs, smoky or not. In the occupational therapy world and in special education, or simply among other moms raising children with developmental disabilities, the term “sensory seeking” and “sensory avoiding” are as commonplace as “dinnertime” and “socks.”
Ugh, socks.
Issues with clothes? Sensory avoider. Needs a weighted compression vest to regulate? Sensory seeker. That young man wearing noise canceling headphones at the 4th of July parade? Sensory avoider. The little one squeezing the family pet a bit too tight, with a big smile on her face? Sensory seeker.
Bare feet in the grass? Seeker. Walks the periphery of the yard to avoid the grass? Avoider. Slams kitchen cabinets? Seeker. Controls environments? Avoider.
Even when Hope was taking her shoes off at school—you know, when her teacher got fed up and taped them to her body—her HIB (Harassment, Intimidation, and Bullying investigation) surmised that it was a sensory issue that was causing her to remove her shoes during the day. And still, with so much understanding among people working with and loving people with SPD, the DSM does not recognize it, so physicians cannot treat it. Thankfully, we have occupational therapists and a million online resources to access so that we can guide Hope as peacefully as possible through her day.
Take the stone saw experience, for example. Some people might jump at an unexpected and sudden noise, then find relief in seeing what is making the sound so that they can reason there is nothing to fear. In SPD, stimuli are experienced differently than they are by those without SPD. A sudden noise, or a constant hum at an undesirable frequency, has been described by people with SPD as literally painful. Painful.
Would you force someone into a cold ocean or a hot tub if they told you the temperature hurt? No? Then why do we struggle to believe that the garbage truck loading up at the end of the block hurts or that verbal language becomes frighteningly inaccessible in a noisy room? The opening of a soda can causes Hope to jump out of her skin and she does not recover quickly (although much quicker as time goes on). A loud sneeze can cause her to burst into tears. And not all days are created equal, so her experiences with auditory stimuli vary based on how much she has been exposed to and is carrying at any given moment. On a day where she is regulated, a sneeze elicits the sweetest little “bessoo” (bless you) I’ve ever heard. Yesterday when I opened a can of carbonated water, she said “whoops!”
Without a formal acknowledgement of SPD, someone who is inexperienced with or untrained in supporting a person with it might approach SPD expressions with behavioral interventions, but there’s a major problem with only tackling surface behaviors without addressing underlying causes. And why on God’s green Earth would I snuff out the wiring Hope has to protect her body from a perceived threat? Having witnessed that she can respond to a stimulus at what we deem an appropriate intensity, instead of constantly telling her “no” or trying to control her reactions, we instead teach coping mechanisms so that she can enjoy a wider range of experiences, which in turn leads to progress in cognitive reasoning and emotional capacity. These are gifts!
SPD and Special Education and Disability Law
Hope is one of the loudest people I know, and also one of the most sensitive to others’ sounds. This is one of many reasons why being in a self-contained classroom is difficult for her—whereas a typically developing child can be distracted and recover quickly, if Hope is distracted it takes much longer to get her back on track. Because her general education peers are less likely to cause distractions, and it is her civil right to learn among them, we know no matter what society says, full and meaningful inclusion is the best placement for her.
Special education law protects her right to a general education environment even if she needs to take breaks or be accommodated in other ways during certain activities. Our school district has historically told me that Hope needs a quieter environment to focus, which can be true, but this has been at the expense of her access to typical peers, general education curriculum, and the incidental learning that comes from a playful, language-rich environment. An attempt to accommodate her disability was replaced with segregating her away in a formulaic space that did not serve her educational or emotional needs.
Our district is not alone in making this mistake. Written right into IDEA (the special education law called the Individuals with Disabilities Education Act), IEP (Individualized Education Program) language actually includes an open-ended field for schools to complete that reads as follows:
“When a disabled student is placed in a general education class in any subject area, the potentially harmful effects for other students in the class are: __________________”
The concern written into the law is not for the disabled student for whom the law was conceived, but rather the typically developing student whose presence has remained unchallenged all along. The typically developing student with a strong sense to self-regulate. The typically developing student without a disability that affects his/her ability to learn. The exclusionary language in special education law is aimed directly at the child who receives special education! And the framework supports an assumption that the student with the disability is the “potential” problem. This is not equality, this is prejudice.
So what do we do to support Hope? She has never had a formal sensory diet created for her, but we certainly have sensory opportunities for her to snack on throughout the day. Hope has proprioceptive issues, which means she is not always aware of where her body is in space. To help this, sometimes she requires input—a weighted compression vest—and sometimes she needs to exert herself—heavy work, via moving her body against gravity or manipulating heavy objects.
She can get very loud and bang objects, a release that can be equated to using a stylus to pop a balloon. This doesn’t feel good to her or to those around her, so instead we work on letting the air out slowly and steadily; opportunities include yoga, breathing exercises, and my absolute favorite for her, music therapy.
In the end, SPD is a disability, and disability is a federally protected category due to a history of discrimination and a lawful expectation for support and acceptance. We cannot segregate children like Hope away and pretend that it’s for their own good. We cannot force these children into a mold, but we must instead build a support system around each of their unique shapes. This was always the intention behind governmental disability protections, but our systems are falling far short of what our loved ones deserve.