A year ago, I found myself utterly exhausted.
My son, who was old enough to be well beyond tantrums, was still throwing epic fits. Constantly.
I’d frequently have to carry him, football-style, under my arm and out the door, his arms and legs flailing behind him. I’d up and left stores, playdates, and restaurants more times than I could even count — all while sweating, red-faced, and frustrated, feeling the eyes of other parents burning into my back.
Each time, my older two children would follow, protesting loudly: “Mommy, why do we have to leave? We just got here?”
Back in the safety of the car, I would flip down the DVD player screen, where the screams would finally give way to silence. I’d take a sip of my water bottle, blast the air conditioning, and sigh. What was I doing wrong? This wasn’t my first parenting rodeo. After all, I have three kids and have worked as a nanny, day care worker, camp teacher, and children’s ministry leader.
I know this gig; I have experience.
Whenever I opened up about things to relatives or friends, they would more or less react the same way — with simple laugh or a shrug. “Boys will be boys,” they’d say flippantly.
But I knew.
I knew that this wasn’t just “a boy thing.” Something wasn’t right. The pieces of the puzzle weren’t coming together.
Then one of our kids’ babysitters, who had just graduated college with a degree in elementary education, said something to me that changed everything: “I think your son needs occupational therapy.”
We talked at length about why she felt that way, and heeding her advice, I decided to pay for a private evaluation. I also called our local school district to sign my son up for another evaluation to see if he qualified for public preschool.
As the forms began pouring in, I filled out stacks upon stacks of packets all asking me to describe my son’s many behaviors and rate his abilities. But instead of feeling fearful, overwhelmed, or offended, I was surprised to find myself overcome with relief.
My mommy-intuition had proved correct after all — there was something more to this than just tantrums.
And soon enough, we had a diagnosis: Sensory Processing Disorder (SPD).
SPD, as I’ve come to learn, is a broad diagnosis for a person who has trouble properly receiving and responding to input via the senses. Some children are sensory avoiders, some are sensory seekers, and some are a combination of both. Children with SPD can often be misdiagnosed or labeled with autism, ADD, and ADHD, often because these three are far more understood and commonly accepted. Though many children with autism have SPD as well, many children with SPD do not have autism.
What I learned as I dug into the research, is that every person actually has sensory issues. Think about it: Do you have an extreme aversion to wearing socks on solid-surface floors? (I know I do.) And while we’re on the subject of socks: Do the seams on your socks have to be in the exact right place? And what about food textures? Do you avoid things like gelatin or cottage cheese for reasons other than taste? Do you crave crunchy snacks or spicy foods? Do certain sounds literally hurt your ears? Do you always have to be tapping your foot, or do you bite your nails?
These are just a few examples of sensory issues a person may have.
The thing is, many of us have sensory issues and learn to cope with them over time. As adults, we can often tailor our environment to fit our needs, perhaps without even knowing it. But for children with sensory needs beyond the norm, like those with SPD, they can struggle when they don’t have the tools and techniques they need to function.
Fast-forward nearly a year-and-half, and everywhere we go, my son now carries a small backpack containing a small weight, a pair of noise-canceling earphones, and several fidget toys. The weight of the backpack gives him the input he needs, since he’s a sensory seeker. The headphones are there to help him control the auditory input that occurs in everyday life, but can often disturb him and send him into sensory overload in a matter of seconds. The fidget toys keep his hands occupied during times when he’s expected to sit and listen.
He also has a “wiggle cushion” in his barstool at home, a two-inch tall textured cushion that he can rock back and forth on to get sensory input as he’s eating a snack or meal. He wears a compression vest at school, which is basically a tight shirt that gives him a hug, helping him be attentive to both the teacher and the task at hand. He loves wearing his rain boots (their bulky design and heavier weight give him more of the input his body craves), as well as sweeping the driveway with an adult-size industrial broom, riding a bike, and purposefully falling down are quite satisfying.
The biggest struggle when parenting a child with SPD is the unpredictability. For example, a single sound can upset my son for days (it’s called “dysregulation” in the SPD community). Take just last week, when a sudden and unexpected hailstorm hit our town. One minute my children were splashing in the bathtub, and the next we heard what sounded like a million baseballs being chucked at our roof. My son’s hands immediately covered his ears, and no matter what I did, I couldn’t console him. For days after, he had nightmares (yelling “it’s too loud!”), and needed lots of extra sensory input.
The other struggle is dealing with those who don’t understand or recognize SPD as real. This can be anyone: a relative, a medical professional, an educator. I can recall the many times fellow moms would openly stare at my family as I would peel my 40 lbs., super strong 3-year-old off the floor and head out the door. The expectations of a child who appears older than his age can be difficult to deal with when the kid is in fact a young preschooler and has an SPD diagnosis.
However, in this last year I have found that the more I openly discuss our realities with others, the more we find connection and commonality. Maybe the mom next to you doesn’t have a child with SPD, but her child is dealing with a different challenge. I have found that being authentic and unashamed opens doors and creates community.
And if you ask me, we could all use more of that.