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Tuesday, December 23, 2014

Surviving the Holidays With Sensory Processing Disorder

Five years ago, I wedged myself into a town car with two fistfuls of luggage and settled into my seat next to my parents. My palms were drenched with sweat, I was unusually clad in comfortable velveteen sleep pants, and I was headed into the middle of New York City rush hour traffic to get to the airport. To take a flight. At night. Overnight. For days leading up to this trip to Israel, I was overcome with the full battery of human emotions. I cried at the mere suggestion of selecting summer clothes for the trip and avoided all interaction with my closet. I giggled uncontrollably as I thought about spending New Year's Eve in Tel Aviv at a swanky hotel feet from the sand. I yelled angrily at and about minutiae - the bill that was accidentally chewed by a postal machine, the chicken cutlets that wouldn't cook quickly enough. I sank my teeth into pillows, uncooperative books tumbling from their shelved perch, and the tender flesh between my thumb and pointer fingers. I didn't know it at the time - clearly - but I was a woman with SPD and I was terrified about going away.

It is very scary for people with SPD to go off on holiday vacations.

Why?

Because whether or not we want to admit it, our lives often look like this, day-in and day-out:


Accompanying anxiety sadly not represented above

T.S. Eliot once wrote "[I] have known the evenings, mornings, afternoons. I have measured out my life with coffee spoons." I always liked to think that as a person with SPD, especially one with sensory avoiding behaviors, I am perpetually measuring out my life with coffee spoons. I know exactly how much time each activity in my day should take. I anticipate my schedule - which, I should mention, is often repetitive and familiar - so that I can better envision and plan for the sensory experiences to come. Just over an hour in a cafeteria? (Thanks for the idea, floating hand above.) No problem! That only means 75 minutes to contend with the barrage of sensory information - the crack and squeak of footwear across the waxed floor, the fluorescent lights bouncing off of the bleach-white surfaces, the murmurs and shouts of nearby diners, the crash of metal fork against knife - as well as make a valiant attempt at focusing in on what my lunchtime companions are saying to me. Difficult, draining, but there is an end-point, a time on the clock when I can say - hey guys, I've got to run and get the hell out of Dodge.

Neurotypicals might call this rigidity.

For the record, this is what I call rigidity:

Wyatt Earp and his mother in 1856 doing their best statue impressions
(I lucked out with that "Dodge" reference, btw)

Sure, yes. I am ultimately less Matthew McConaughey on sedatives in a hammock in Aruba on vacation and more mid-1800s woman in a corset clutching her child and sternly glaring at the new-fangled camera. But really, I am Rachel on the edge of sanity with the light of a thousand fluorescent suns in my eyes and the echoes of a thousand speakers in my ears. I don't usually know where my body ends and the world begins. Can you blame me for wanting something grounding, something to act as scaffolding when the unpredictable world can fall down in chunks at any moment?


Chicken Little clearly had SPD


Let's recap, shall we?

SPDers, especially those who avoid sensory stimuli, often keep tight schedules. We plan ahead so that we can better anticipate the ways in which we may need to deal with sensory input. We also plan so that we can figure out when we can take a breather. Because in case it hasn't become clear just yet, having SPD is exhausting. We're not just dealing with the events of our life, we're dealing with a somewhat busted processing system that is perpetually demanding our attention. A schedule gives us permission to take a pause. Look how much I've been able to do! I'll often think to myself. I need to lay down now or I fear that my face may actually melt off! Damn everyone and everything in my way!

Which brings me back to holiday vacations.

Suddenly, our familiar, somewhat-stable sensory world is turned upside-down. We're encountering new places, new people, new sensory input. Some of it is amazing (halva, the sugary ground sesame confection found throughout the Middle East, tastes the best when bought from a street vendor in the thick of Jerusalem's Old City) - and some of it is terrifying (never get accosted by a French Canadian marionette in a souvenir shop when your senses are going haywire, mon ami, trust me on this one). And not only are we elsewhere, frantically working to rebuild some semblance of a familiar schedule, we're most likely faced with people who don't know about our SPD, minimally understand our SPD, and/or have never seen us use our quirky, Seussian looking tools. Our self-esteem once again goes into a tailspin - what if Aunt Joan asks me about my fidget?! What if cousin Danny makes fun of my Wilbarger brush? What if Grandma Maris won't let me leave the table for some quiet space?


They'll bring their farfookas and bang their whohoopers . . .
At least most SPD tools look less creepy than this guy -
Although maybe he's onto something here


So what's an SPDer to do? Never venture out in an effort to protect the schedule, the anticipation, the tools, and the self? Spend Christmas alone, Chanukah solo, and New Year's Eve in hiding?

That's a negative, ace. 

Listen. We with SPD have SPD. We are going to have it today as we gently twist in our office chair. We're going to have it next week as we cringe at the merriment and mayhem in Times Square. We're going to have it the month after that wherever we may find ourselves. Wherever we go, there we are. We can fight this, resent our lot in life, and hate ourselves - but in battle of You vs. Yourself, you will always lose. (These odds are never in your favor.) We can also make the conscious choice to make room for our SPD at the proverbial holiday table. Move over, Great Aunt Mildred. Watch out, carved turkey. I'm a'comin'! 

We can recognize that holidays mean disrupted schedules, and disrupted schedules are scary. No, it's not the same! Yes, that means it's different! It's OK to be edgy and angry and anxious. Anticipating this temporary change is most certainly part of our MO. Go ahead, kick the ottoman. Cry in a heap on the bedroom floor. Yell at your neighbor. This pent-up anxiety will ultimately be your fuel as you burst with energy from the stressful wait-here present and propel yourself into the holiday weekend. 

We can work to find structure and stay regulated in other places. Maybe you can always sleep until 10am when you're home for Christmas. Maybe New Year's Eve in Prague means the festivities begin at 11pm and go until dawn. Maybe there's always a family siesta sometime after lunch and a guest room with your name on it (and, ahem, weighted blanket in it). Brush your teeth at 7am, use your Wilbarger brush at 7:10. Find a schedule that works for you within these new (and temporary!) boundaries. Fill up that sensory bank in spite of what people may say (or even what you suspect they may be thinking - if they don't like it, that's just too bad). 

We can remember that this is a temporary change. These special days of the year are small blips on the radar of our lives:

Boop.  Boop. Boop. Happy New Year!


Have you survived them before? Well, you're reading this, aren't you? So I'm going to guess yes. You can survive them again. You can detach from your schedule and face them head-on. Will you feel uncomfortable? Probably. Will you feel anxious? Sure. Will you have a good time? That's your call, but I sure hope so. The radar of our lives is finite, and somewhere out there should be something that we find to be pleasurable and peaceful all at once.

****

It's been five years since I bravely boarded a sunset plane to another continent in an effort to celebrate the holidays somewhere special. I was a wreck. Was it worth the anxiety and the angst, the edginess and the effort? Consider this: I rang in a new decade thousands and thousands of miles away from home during the holiday of Sylvester, a day that for me evoked a cartoon Puddy Tat with a sprawling grimace. I palmed ancient ruins and felt the energy of the ages move through my fingertips. I floated in a vast salt sea very far away from the safety of my supremely structured schedule. 

Why yes. Yes it was. 


Floating in the Dead Sea, New Year's 2009

Wednesday, December 17, 2014

Supporting SPD Researchers at UCSF Benioff Children's Hospital San Francisco

I'm really excited to be connected to the incredible Sensory Processing Disorder researchers at UCSF Benioff Children's Hospital San Francisco. This team of neuroscientists, neurologists, geneticists, radiologists, and computational experts is working hard to uncover critical information about SPD. They're the team that discovered the biological basis of SPD in 2013 and the brain wiring differences of SPD versus Autism in 2014, both groundbreaking studies with findings that continue to shape the medical community and the lives of all people with SPD.

They've recently surpassed their $50,000 fundraising goal to support the next round of crucial studies on SPD, including genetics, brain imaging to uncover the specific brain connections that contribute to the practical challenges of SPD, and new treatments, but donations are always welcome.

I truly believe in the work that they're doing to change the lives of people like me. To voice my support, I wrote the following blurb. I'm proud to say that it was featured on their fundraising website this week, as well as emailed to all donors:





If you are interested in supporting these incredible endeavors, please visit their fundraising page.


Wednesday, December 10, 2014

My Guest Post for The Body is Not An Apology

I am beyond thrilled to announce that The Body is Not An Apology (www.thebodyisnotanapology.com), an organization dedicated to global and radical self-love, shared my original post, The Neurotypicals' Guide to Adults with Sensory Processing Disorder, on their online magazine and website!



You can find a link to the article on their page here.

Let the outreach and advocacy continue!

-Rachel

Tuesday, December 9, 2014

Here I Am (Say Cheese)



I've had a torrid love affair with camera lenses and the space in front of them as far back as I have memory. The daughter of a talented hobbyist photographer (my mom) and a circumstance-driven videographer (my dad), I naturally grew up pointing and posing and flashing a smile whenever anyone lifted anything camera-esque to their face.




Even as a very small girl, I knew that I could be anyone I wanted in these captured moments - regardless of how I was actually feeling the seconds before and after the flash went off. So what if my tiny body was bone-weary and my bleary eyes felt pebbly and harsh staring into the sensory din? And what of the garbled, intertwined sounds of voices dredged with the whoosh of taxis and the occasional prolonged honk of an impatient motorist? What of the anxiety? That moment - the forced pause, the poised position - helped to ground me and connect me to my immediate reality. Stop, it suggested gently, and be that graceful, joyful girl. Smile and embrace the world. You are more than your sensitivities.

I may not have known where my body was, but the camera knew - it saw me when I could not see myself. Here you are, the photos reminded me from between the pages of my mother's carefully planned album, here's that time you trekked between the orange trees. Here's that time you felt like a magazine model in your new dress.



I should state here that I came of age during the first waking moments of internet culture. I was 12 the first time I heard the muffled static and ringing of a dial-up modem and the tinny, most prized words of the mid 90s - YOU'VE GOT MAIL. Then there was AIM with its away messages - those proclamations of personal philosophies - and Geocities pages imbued with inside jokes and arcane love messages of the forlorn. As time passed, photos began to matter again. There was simplistic Friendster with its naive Testimonial wall and its flashier, more melodious sibling, MySpace. And then along came Facebook and changed the way we all perceived ourselves and our worlds.



For me, each one of these outlets was an opportunity to be seen, to be located - not just by old friends and flames, aunts and coworkers, but by myself. Here's that time you helped lead a club and cooked gourmet meals in a crisp, steel kitchen late into the night, the photos whisper. Here's the time you played tourist in your own sleepless city. Here's the time you pretended to know the Tango.

These days, I am guilty for perpetually flooding my personal Facebook page with photos. Well-meaning family-friends remark "think you put up enough photos of this already?!" and I try not to take them personally as picture after picture gleefully form on the screen. Here's one of you with your new haircut looking pensive and mysterious, they say to me. Here's one of you and your husband/handler on a rocky outcropping. Here's what you're looking at right now. Here are your matching Converse sneakers on a railing. Here's your dessert baking in the oven. Here you are with cousins. Here you are with friends making faces. 

There's one commonality to my photos as I'm sure there are to yours - I'm almost always in them. Like a tiny person making their way through the tall grass, each photo is a leap into the air and a visible, waving hand. Here I am! Here I am! Don't we all just want to be seen? Perhaps some of us more than most, those of us who cannot always see where the tips of our fingers end and the world begins.



Sure, there are activities I cannot entirely complete without a swift sensory unravel. I've come to accept this fact with the same poise and grace I've always mimicked in photographs. Posing has taught me how to see my way through the viscosity of the everyday and hold on to the fleeting moments, the pause in which I can be anyone feeling anything. Those times that I prevail in whatever it is I'm trying to do, the minutes in which I can set aside my SPD and insert myself into a situation with near comfort - well, I'm proud of them. I want to capture them. I want to learn from them. I want to remember them.

This is why I am always pulling out my smart phone, primed for a selfie with whomever happens to be within my reach. It's why I'm handing you the camera and tossing my chin over my shoulder. Here's the time you put your SPD aside and really lived, the photographs state firmly. Here's that thing you managed to do in spite of your challenges, in spite of everything.

****
To learn about my adult life with SPD, read more of my blog, Coming to My Senses, and visit my website at www.rachel-schneider.com.




Tuesday, December 2, 2014

Sensory Processing Disorder, Plain and Simple

Read.
Print.
Hand out to family and friends over the holiday season.
Tack to the fridge.
Recite from memory.
Toss by bucketfuls from the top of your town's tallest building.
Repeat.
SPD is simpler to explain than we think.
**


Q: WHAT IS SENSORY PROCESSING DISORDER?

A: Familiarly known as "SPD," this hidden ("invisible") neurological condition impacts a person's ability to filter, process, and respond to sensory input.

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Q: WHAT SENSES ARE IMPACTED?

A: Depends on the person. There are eight senses and children, teens, and adults with SPD struggle with a unique combination of aversions to and cravings for specific sensory input.

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Q: WHAT DOES IT FEEL LIKE?

A: Being exposed to the wrong combination of sensory input can leave a person with SPD feeling quite uncomfortable. People with SPD often describe feelings of fear, detachment from the situation or their body, distraction, agitation, frustration, sadness, anger, and a discomfort so great it can mimic pain or actually come across as pain. Secondary feelings of embarrassment or shame are also common, especially in teens and adults who believe that they "should" feel and behave in a particular manner more commonly accepted by society.

In the presence of the right combination of sensory input, people with SPD can feel calm, centered, engaged, grounded, peaceful, strong, and able.

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Q: WHAT CAUSES SPD?

A: This is a question still being answered by the medical community. Researchers at UCSF Benioff Children's Hospital San Francisco were the first team to map the biological underpinnings of the disorder. Future studies will help us understand more about SPD and the most effective treatment methods.

***If you want to support the team and their crucial SPD research through funding, click here.***

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Q: HOW IS SPD DIAGNOSED?

A: There is no "official" SPD diagnosis at the moment. This is due in part to the disorder's current standing in the medical community. In time, it will be more easily diagnosed by medical and psychological professionals. An occupational therapist (OT) can evaluate children, teens, and adults for SPD. If you suspect that you may have the disorder, reach out to a local OT for more information. Some psychotherapists (psychologists, mental health counselors, social workers) are also beginning to understand SPD as well, but they currently do not have a tool for evaluation.

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Q: WHAT'S THE DIFFERENCE BETWEEN SPD AND AUTISM SPECTRUM DISORDER (ASD)?

A: Most people with an Autism Spectrum Disorder (ASD) also have SPD; most people with SPD don't also have ASD. Thanks to a 2014 UCSF study, we now know that SPD brains are wired differently than brains with ASD.

People with ASD are frequently sensitive to sensory input in the same way as people with SPD, but there are also other symptoms, including deficits in social communication and interaction that are uncommon in SPD.




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Q: HOW IS SPD CURRENTLY TREATED?

A: Children with SPD receive occupational therapy. These exercises and tools help them rewire their quickly growing brains. Adults with SPD often seek a combination of occupational therapy, psychotherapy, and physical/visual therapy to tackle the complexity of the disorder in adulthood. 

When caught early (childhood), occupational therapy can supremely reduce the impact of SPD. When caught later (teenagehood, adulthood), some of the SPD symptoms can be alleviated through tools and exercises, but the disorder will continue to be more of a concern. 

Because the final stage of brain development occurs around age 25, it is impossible for older adults with SPD to rewire at the same rate as children, and treatments for adults will only be effective to an extent. 

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Q: WHERE CAN I LEARN MORE ABOUT SPD?

A: