Coming to My Senses

Rachel is hands-down one of my favorite people who also happens to have Sensory Processing Disorder. Rachel and I originally connected through this special Voices of SPD venture. When I read her words on the screen, I heard her voice and recognized the voice my sons might have when they are older.

She is a champion for adults with sensory challenges and a guiding light for those of us trying to look into the future for our children.

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Allow me to introduce myself by way of a bruise on my calf. I know this is a bit unconventional, but bear with me.

Ouch. Yes, that is the size of a softball.

Two days ago, on my way home from the gym, I thought I’d pop into a local restaurant. It was early in the morning, and I was sure there would be no clamor of silverware or clash of voices with which to contend. The restaurant would be bathed in only natural light. I was visiting to check out a series of childhood photos on the wall – four of which belonged to my husband and me. How unique, I thought, for a restaurant to ask local patrons for their baby photos. How awesome to be someone else’s wall art.

I took pictures with my smartphone of our parallel smiling baby faces as quickly as I could, hoping to leave before disturbing the owner and his employees. His booming voice surprised me from behind, and as I quickly whipped around to track the source of the sound, I plowed directly into something. I can only assume it was a chair; but in the moment, I was just trying to readjust my senses in the room. The owner was lovely. He knew my standard order, and together we cooed at the pictures before I walked out the door. At the time, I had no idea I was growing such a large bruise.

My name is Rachel, and I am a 29-year-old woman with Sensory Processing Disorder. And that bruise is just another badge of SPD honor I sport. I was finally diagnosed in 2010 with SPD at the age of 27 after being misdiagnosed at age 14 with Panic Disorder. I describe my diagnosis with the same analogy anytime someone asks for my history. Being diagnosed with an anxiety disorder was like ferociously trimming the leaves of a weed, hoping it’ll shrink and disappear. But the roots, my SPD, firmly interlaced with the soil below, remained intact – even through three psychologists over 13 years (who all accepted my first diagnosis). The last of these three PhDs suggested I may have some “sensory sensitivities,” but she never recommended an Occupational Therapist, and she didn’t use the three letters I now hold dear.

No one ever questioned why I felt confused, anxious and agitated when certain sounds, lights and movements mixed. No one ever thought twice about my propensity to hurl my body into objects, even if I was gingerly trying to step around them. Not once was my need to sleep under five blankets, hug everyone, touch soft things, shrink away from loud, populated areas (especially at night), or have meltdowns of endless tears and dissociation from sounds and lights thought of as anything beyond “just anxiety.”

To be fair, SPD wasn’t exactly a diagnosis back then. It still isn’t, thanks to the ongoing DSM-V debate – don’t even get me started. There had yet to be any sort of Spectrum enlightenment, which is slowly bringing SPD into the spotlight. I was, essentially, unable to receive the right diagnosis.

In 2010, after getting accepted into graduate school to obtain my Master’s degree in Mental Health Counseling, I started work with a new therapist, and my life changed. I told her about my history and described that maybe I had something wrong with me sensory-wise. Before our second session was over, we were on her laptop, and I was taking a quiz to see if I had sensory issues. And why yes. Yes, I did.

That night, climbing further down the roots of my beautiful weed, I contacted an Occupational Therapist and described my concerns. She called me in for a session and managed to sum up in five minutes the words I could not find for all of my 27 years. She said I had Sensory Processing Disorder – Sensory Modulation – Over Responsivity to sight, hearing, touch, vestibular/movement and proprioception/body-in-space. She also told me my vision and auditory system were in constant competition, which often resulted in whatever affected grey matter in my brain shutting down. This shutdown, called many things throughout my life this far, makes me feel anxious, unfettered and out of control, and so in hindsight, it is no surprise that therapists glossed over this process for years, calling it a Panic Attack. Truly, how else is one supposed to respond when it feels like their brain isn’t working properly?

So back to my bruise for a moment here. When I peeled back the leg of my workout pants to find I’d bashed into something yet again, I laughed. (In between icing my leg and limping around, of course.) I laughed because as an adult with SPD, I have learned that some things never change, even with treatment. Even with a rigorous Wilbarger brushing regime that I refuse to give up, even with handfuls of deliciously soft and smooth fidgets, even with a weighted blanket and an endless supply of chewing gum. Parents, think of me as what could be if you hadn’t been able to seek treatment for your children. Fellow adults, you are not alone. I’m happy to be this voice of SPD. I am finally coming to my senses.

Recommended Reading

• Making Sense: A Guide to Sensory Issues
• Sensory Like You: A Book For Kids with SPD by Adults with SPD
• Sensory Processing Disorder: Get the Right Diagnosis

This post originally appeared on Coming To My Senses. You can read more from Rachel there.

If you’d like to become a part of Voices of SPD on The Sensory Spectrum, please read about how to join Voices of SPD.