kid holding ears

Every morning, my daughters sit on the couch and rock out. Literally, rock back and forth. Sometimes they rock in tandem. Sometimes they move in a complicated alternating rhythm unique to their current moods. But they always rock.

My oldest daughter, B, loves slamming her back against a couch or headboard or chair. We think my youngest daughter, E, rocks because her sister rocks.

As a mom, I feel a constant tension between “labelling” my child and sharing her diagnosis to promote a better understanding of her behavior. Children like B can’t just “sit still”. Movement helps her relax and control the crushing anxiety she experiences on a daily basis.

When B was diagnosed with sensory processing dysfunction, I did what any mother would do: I googled until my eyes blurred. Often when people learn of her sensory issues, their response mirrors my own at her diagnosis: “What’s that?”

The disorder is hard to describe because it takes many different forms and varies in intensity. Children with autism often have sensory issues, but having sensory issues alone does not make someone autistic.

I heard the best explanation during B’s school evaluation:

Imagine your senses have a dial. When something becomes too “loud”, a noise, a sound, visual input, most people have the ability to turn down the volume. They hear the jackhammer on the sidewalk. It’s annoying, but they tune it out or turn it down in their minds.

A person with a sensory processing disorder can’t. They hear the relentless hammering and are overcome by sensory input. The sound will eventually send their anxiety levels soaring. Conversely, sometimes people with sensory issues want to turn up the volume and can’t.

B rocks because she’s seeking sensory stimulation. She also walked on her toes to feel the pressure of her entire weight on the smallest area. As much as she craves tactile experiences, she avoids other sensory input. The aroma of bananas sends her into a panic, and loud, unexpected noises are terrifying.

Every specialist, from behavioral pediatricians to educators, had the same advice: Let her rock as much as she’d like at home. So we do. She rocks before breakfast, she rocks in the car seat on the drive home from school, she rocks when she gets home. When she started Kindergarten, we made a visual schedule with “Rocking” as a key item. Try to google a picture of THAT.

And as odd as it might seem, it works. She shoves her little feet in between the couch cushions (feet need sensory input too) and rocks out all the anxiety for the day ahead or all the frustration from a day sitting as still as possible at school.

When we visit friends and family, she rocks there as well. This has started more than one conversation about sensory processing issues, what it means for B, and whether or not to “label” her.

Labels are tricky. Many of the behaviors that are attributed to B’s diagnosis are ones I share. If a clock is ticking anywhere in my general area, it feels like someone is tapping me on the forehead. If an unsuspecting friend or relative puts me in a guest room with a ticking clock, I will never sleep. I have banished countless timepieces to laundry rooms and lower levels while my kind hosts snoozed. I always put them back, but each time I’ve snuck a celebratory anniversary clock into a hall closet in someone else’s house, I’ve felt like a freak of nature. When you add to that the ear plugs I travel with at all times and the fact my mother’s over-the-top decorating leaves me with a migraine (so many colors, so many patterns, so many THINGS), I’m pretty sure I have the same disorder.

As a kid, I was considered “extremely sensitive” or “difficult”. I’ll admit, raising me wasn’t a piece a cake. I give my family full credit for their patience. But I wonder what my childhood would have been like had there been a “label” for me? Before I was old enough to stash other people’s clocks without them knowing, it would have made my life a hell of a lot easier.

As an adult, I have more control over my environment (or at least the decorations). If something is bothering me, I know when I need to take a step back, and generally I have the authority to do it. In other words, I learned to work around it. I avoid uncomfortable clothing. I avoid crowds where there’s just too much going on for me to handle. If I’m getting edgy, I know I require a dose of solitude and quiet to regroup.

Like dyslexia and autism, awareness of sensory processing disorders is on the rise. And like these conditions, there is no “cure”. There’s occupational therapy to gently expose kids to the sensory input they avoid. There’s physical therapy for toe walkers like B to get them down on their heels. There’s behavioral specialists and therapists to help with anxiety. But more importantly, there is a rise in understanding and compassion within school systems and communities.

Sometimes B behaves badly, and it has zero to do with sensory processing. She earns time outs like any other kid. But sometimes, her behavior is intrinsically linked with the unique way she experiences the world and her inability, at least for now, to control her sensory dial.

Before E joined her, B rocked so feverishly she broke the wooden frame in my couch. As she’s gotten older, the rocking remains, but it’s softer now, either to accommodate for the added input from her little sister or because she needs it less. She now has the words to tell us if something is bothering her, and we’ve learned to listen.

Sometimes we work on a solution together, sometimes we practice tough love: Your sister enjoys bananas. Bananas are healthy. We are not banishing bananas from the house. If the smell bothers you, move to the other side of the room.

Each child has unique abilities and challenges. If we tried hard enough, we could create a label for just about anyone and still know little about them. But if we approach everyone with an open mind, we just might learn something.

My daughter is a sensory kid. She’s also creative, bright, and hilarious. I embrace all these labels with the understanding that none of them alone define the child she is or the woman she can be.

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Kathryn Hively

I started Just BE Parenting as a way to cope with the anxiety of balancing work, motherhood, and the impulse to write. That’s right, I’m not a parenting expert. I, my kids, and my family are perfectly flawed in MANY ways. As a parent, I’m trying to let go of perfection and just BE the best mother I can for my kids. The ‘B’ and ‘E’ in Just BE Parenting also represents the first letters of my children’s names. What works for me and my family may not work for you and yours. That’s ok! Even if we’re not the same, I hope you’ll find something relatable here.

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