Friday, September 26, 2014

My Podcast Episode is Now Available on iTunes

Good news, CTMS readers!

My episode of the SPD Parent Zone Podcast on adulthood SPD is now available for free on iTunes!

Download it here and enjoy learning about SPD from your desktop or on the go.

A new post is in the works, so check back soon!

- Rachel

Tuesday, September 16, 2014

"Warehouse of Chaos" - Meet Kelly

I am so thrilled to introduce you all to the hilarious Kelly Dillon, another amazing SPD adult I've met through my Facebook group Sensory Processing Disorder Adult Support. Kelly's illustrated blog on SPD, Eating Off Plastic, had me rolling with laughter from the very first read. Using her artistic prowess and off-beat sense of humor, she's managed to take the mystifying, anxiety-provoking world of SPD and turn it into something palatable, something to be embraced and not to be feared. Thanks to Kelly, SPD has almost become it's own (incredibly welcome) inside joke for SPDers and handlers alike. 

Pull up a page and enjoy!



Being in a public place can be like a sick, twisted game for people with SPD. There are so many sounds, lights, and smells! THE INSANITY. However, we are human, and as such, we are expected to participate and interact with the world and all of its sensory-ness.

With that being said, only an SPD fool would enter a sensory-filled electronics store, like Best Buy, for example, and expect to come out unharmed.

So last week I was in Best Buy with my dear mother. 

At first, my curiosity overruled my sensory issues. Shiny, colorful, sparkly, touch-y; it was all there. 

Still, I have found that there is a very fine line between "Oooh! Look at the pretty lights!" and "SOMEONE NEEDS TO  KILL THE ALL THESE LIGHTS!"  Best Buy likes to dance around that line by creating a sea of sensory chaos trapped inside four giant walls. Essentially, Best Buy is a warehouse of chaos. Yes, you can quote me on that.

Soon enough though, the sensory-filled space - normal and enjoyable for those without SPD - started to mess with me. "I'm fine," I told myself. "I'm an ordinary person looking at products in an environment." I believed that I could convince myself that I did not, in fact, have Sensory Processing Disorder. 

I failed.

My balance was the first to shut down. I began crashing into table displays featuring somewhat expensive items. 

Then, because my life is awkward and unbelievable, I started crashing into table displays featuring VERY expensive items.

As we meandered through Best Buy, my mom gently placed her hand on my arm to point out something to me, but obviously, that didn't end well. 

What my reaction looked like in my mind:

What my reaction actually was like:

My mom's light touch to my arm was perceived as a threat to all that was good and holy. My sensory system was officially having a tantrum. I need to get out!  My thoughts grew desperate. I knew this because I started thinking strange things, like: 

After my refrigerator fantasy, I decided to search for the only solace that I knew existed in all of Best Buy, like Harry Potter in search of the sorcerer's stone (as seen in that book, Harry Potter . . . and the Sorcerer's Stone). 

And there they were! Noise canceling headphones! SILENCE IN THE WAKE OF PANDEMONIUM.

Of course, the trip to Best Buy would not have been complete without the emergence of the T-Rex, which is what I call it when my body attempts to re-balance itself in the face of sensory stimulation. With my arms bent at the elbows, my hands floating awkwardly, and my body leaning forward, I end up walking on my toes . . . LIKE A DINOSAUR.

Moral of the story: Best Buy is a fun place . . . if you don't have Sensory Processing Disorder. Also, refrigerators can and SHOULD be used in sensory-related emergencies. 

Kelly is the author of Eating Off Plastic, an illustrated blog, where she chronicles her life as a young adult with Sensory Processing Disorder. Kelly has a BA in Psychology, and spends most of her time laughing at herself and then writing about it on her blog.

Monday, September 8, 2014

My Podcast Episode with SPD Parent Zone

Back in August, the co-Founder and President of the non-profit SPD Parent Zone, Kelly Jurecko, asked me to be the third interviewee on her organization's newly-founded podcast. This was huge news. I was told I'd be following in the recorded footsteps of community giants Carol Kranowitz, author of The Out-of-Sync Child series, and Dr. Lucy Jane Miller, Founder and Executive Director of the Sensory Processing Disorder Foundation. 

It is a tremendous honor to have my voice follow the words of these wonderful women. Kelly once called me "The Temple Grandin of SPD" - an unparalleled compliment that I continue to treasure, and I am thankful for this unique opportunity to share my voice, my ideas, and my experiences.

Here is the podcast episode itself. It's about 50 minutes long and details my own story, as well as my experiences engaging with SPD adults, treatment modalities, research findings, and ways to reframe the SPD adult experience. 

The show notes are still being updated and edited, but you can find the link on SPD Parent Zone's website

I look forward to hearing your comments and continuing the important dialogue on SPD and adulthood. 

Thursday, September 4, 2014

Sensory Processing Disorder Adults and Parents Speak Out in Parallel

A few weeks ago, my friends at the SPD Foundation posted the following thought-provoking question to their Twitter and Instagram accounts: "You know you're an SPD parent when _______." As a mental health professional and SPD adult, I loved this open-ended statement. There's no better time to share your experiences than in the purposeful void left by a pause. Although the original exercise was meant for parents, I tweaked the statement in my head so that I, too, could participate. I quietly mused:

You know you're an SPDer when . . .

You grab an egg from the fridge intended for breakfast and drop it on the floor instead (a.k.a. what happened to me last week when I tried to make breakfast. I later dropped a fork too, in case you're wondering. Love when proprioception decides to sleep in late when the body is already up and active).

You find a gash on your arm of indeterminate origin and are surprised that it's even there (just this week I felt a sting on my arm, and was shocked to see a scrape from my shoulder to my elbow. Can't tell you how it happened - I'm pretty sure my injuries appear from thin air).

You're so startled by a car's aggressive honk that you fight the urge to bite something all day and later yell at someone and/or cry for seemingly no reason (this sums up most of my general experiences with noise. Even more impetus not to startle me. CHOMP).

You cater each meal around the right combination of textures and flavors (my greatest daily challenge. It looks like crunch, chew, mush is the winning combination for this SPDer. No lumpy, though. I reserve the right to refuse lumpy food). 

Pleased, I immediately posted a modified version of the original statement to my SPD Adult Support Group on Facebook. It wasn't a completely novel concept for this group of SPDers. Many engaging and enthusiastic members had posted similar comments over time. It was, however, the first time this question was asked to the group at large, and I was interested to see what responses my supremely sensitive cohort would generate. The answers made us all laugh. Each comment had a half-dozen "likes," and follow-up comments were filled with cheers of "me too!" and "YES."

When I described these events to my friends at the SPD Foundation, they proposed a joint-post, hosted on Coming to My Senses, listing the reactions we collected. Tada!

Want to know what it looks like to be an adult with SPD or feels like to be a parent with an SPD kid? Check out our collective responses below.

(via SPD Adult Support)

"You scowl at the meat you're frying because you don't like the sound."

"You ask your husband to use plastic utensils so the sound doesn't annoy you."

"The smell of food on your skin grosses you out."

"You ask your friend how they taught their kids to know when they are hungry (and get an odd look) because you don't know how to read your own body's signals."

"Your headphones practically equal life."

"You cringe and want to run for the hills when the blender gets turned on."

"A normal night of sleep means a weighted blanket, a weighted sleep mask, earplugs, lavender essential oils, and anti-anxiety meds."

"The sound of fireworks makes you want to jump and hide, even when you know it's coming."

"You hear and react to sounds no one else hears."

"Being in the middle of a crowd freaks you out, and you still shake for hours afterwards."

"You curse the person who made automatic flushing toilets and hand dryers in public bathrooms because you can't cover your ears and dry your hands at the same time."

"When you are feeling stressed by sensory overload, you can't talk to another person because the speech part of your brain feels like it shuts off."

"You put on hearing protection wherever you go - especially into public bathrooms."

"You NEVER leave home without your earplugs."

"A simple outing means planning and packing your entire life - and it's never enough!"

"You wait for the perfect weather or perfect day to go out and do something as 'simple' as food shopping, and then you have to change those plans if something feels 'out of whack.'"

"Your blanket weighs as much as a small child."

"You lose your balance while waiting for the elevator."

"You look drunk when you leave the movie theater because you're so disoriented from sensory overload."

"You carry a big purse to accommodate all of the sensory tools inside."

"You turn down a hug from your child because you just can't take any more sensory input."

"You 'hit the deck' (lay face-up on the floor) to help you feel where your body is in space."

"You almost fall down the stairs right after waking up, before you've had a chance to do anything to help - like put on tinted lenses."

"You have an array of tinted glasses and sunglasses so you're prepared for every occasion."

"You visit the supermarket early in the morning, midweek, when you know most people are at work."

(via the SPD Foundation)

"You don't hand out a spoon with pudding and yogurt, but instead a straw."

"You always carry around several pairs of sunglasses because your child can't stand the bright sun."

"Practically everything in the house has teeth marks."

"You don't go anywhere without a pair of headphones in your purse."

"You are an expert in explaining to others what 'deep pressure' is."

"The nurses in the ER know your child by name."

"You meltdown in silence because nothing you do can calm your child's meltdown."

"As soon as you buy them new clothes, you go home and get out the scissors - no tags!"

"You are relieved when teeth brushing, hair washing, and nail trimming time is over."

"You feel like you've won the lottery when your child even licks a new food."

"You let your child spin in the middle of a restaurant instead of insisting that they sit down."

"Half of the dishes are broken because he wants 'big noises.'"

"You always have a new activity waiting and noise canceling headphones to make dinner."

"You constantly whisper 'it's OK' throughout the day to calm your child's anxiety from the surrounding noises."

"You breathe on their neck accidentally while giving them a hug at bedtime, and they say 'ow!'"

"Your couch has turned into the Big Balls from Wipeout and your living room is a Wipeout zone."

"You don't attempt colored, soft, or touching food because the meltdown and the fear your child has just isn't worth it."


What struck me most about the responses from these two ultimately disparate sub-groups (caretakers and those with the diagnosis) is that there are similarities in the comments - but of course, because we're all ultimately talking about SPD, we might expect parallels between the two. Both groups are comprised of adults - some peering into SPD from their protective parental posts outside, and some gazing outward from within the trenches. However, while the adult group's responses (including my own) express the deepest frustrations of living this life of perpetual adjustment and explanation, the parent group's vocalize the emotional component of secondary failure - as well as success. This is they key word here, it is the thing that gets lost for us SPD adults when we must trek through our viscous neurological muck day-in and day-out. SPD parents have solutions and suggestions, bottomless bags of tools and the enthusiasm to champion their child even during their toughest moments. They take control when the world is turning upside down.

Something has become quite clear to me. SPD adults must work to become their own good parents. 

I am perpetually grabbing straws and popping them into dairy-free smoothies because I know that sucking helps regulate the senses (and banana cinnamon almond milk smoothies happen to taste like liquid banana bread, but that is neither here nor there). My apartment is home to a trampoline, numerous weights, a balance board, putty, and fidgets. I feel like I've won the lottery when I taste something new and am enchanted by the complexities in flavor and texture. I am constantly whispering to myself "it's OK" throughout the day to calm my own anxieties from whatever sensory input is causing me distress.

Sometimes I forget that I do these things relatively successfully. Sometimes it slips my mind that I am morphing into my own good SPD parent too. It's like having one differently wired brain and two psychological approaches to the same situation. 

In adulthood, the ultimate goal is to have absorbed enough wisdom and guidance in childhood from our family unit and society to function as smooth, well-adjusted people. SPD adults of this generation were never really SPD children. We didn't have the therapy, tools, or techniques at our disposal because they were incredibly uncommon. We didn't have the words in our lexicon to justify our seemingly strange experiences of the world. We had to rely on our gut reactions to situations to frame our needs, and then we had to find subtle, acceptable ways to meet these needs. Because of this, in many ways, SPD adults are still growing up - especially when faced with an adulthood diagnosis. We must integrate our decades-old world view with novel information.

I am fortunate to come from a loving, supportive family, and in many ways, their voices have contributed to my own inner monologue: Push the limits. You can do anything. You are stronger than you think. It's taken me some time over the past four years to intertwine their words and my own experiences, now that I have my official diagnosis; now that new terms flood my vocabulary and new acceptable tricks enable me to keep my dysregulation at bay.

SPD adults, let's learn from this experiment and think about the ways in which we can be kinder to ourselves and more willing to take on the challenges that our lives present. Let's develop that hopeful internal voice. Let's work on loving ourselves unconditionally, like a good parent would.

My inner SPD parent tells me that I'm making some pretty significant progress. I wholeheartedly agree.

Sometimes, what seems like a simple exercise in collective expression really has a deeper meaning. Again, thanks to the SPD Foundation -- especially Susanne Geiler and Jodi Kinnen -- for enabling these two groups of SPD adults and SPD parents to open up and share their feelings about their sensory worlds, as connected and divided as they may seem.