POWr Social Media Icons

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.

*********************************************************************************
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.

*********************************************************************************
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.

*********************************************************************************
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.***

*********************************************************************************
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.

*********************************************************************************
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.




*********************************************************************************
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. 

*********************************************************************************
Q: WHERE CAN I LEARN MORE ABOUT SPD?

A:

Friday, November 21, 2014

"Enjoying Your Food Without a Sensory Fight" - Meet Annetta

I'm happy to introduce you to the enthusiastic Annetta Nesler! From our very first chat, Annetta has always been hungry for information to help explain and illuminate her experiences with SPD. Her blog often takes a reference-style approach, clearly illustrating tips and techniques that she finds useful in her daily sensory life. Her down-to-earth suggestions are both personal and practical. In this post, she shares her tips for those of us with some basic gustatory sensitivities.

Happy reading (and happier eating!)

-Rachel
Side Note: Thanks to Annetta for bringing up the issue of SPD and eating. Since 2010, I've met many SPD adults who carry an eating disorder diagnosis. When an individual has gustatory and interoceptive issues, it's extremely easy to confuse SPD for an eating disorder. For someone with gustatory and related interoceptive sensitivities (especially someone without an SPD diagnosis who is supremely dysregulated), the texture, flavor, and overall feeling of food in their mouth and stomach can be so uncomfortable and distressing that eating is feared and avoided at all costs. Others may force themselves to eat but quickly spit out the food or subsequently throw it up. In contrast, someone who seeks gustatory and interoceptive input may actively crave the feeling of food in their mouth and stomach, and might binge or frequently overeat as an effort to help placate and regulate these senses. Many of these sensitivities could read as eating disorders. If you have been diagnosed with an eating disorder and suspect that sensory issues are ultimately at play, see an occupational therapist. By working with the avoiding or seeking behaviors and employing a number of techniques, many of the non-psychological issues related to food can be addressed. As Annetta mentions below, be sure to see a psychotherapist to help with the psychological component as well. 

****

Five Tips to Enjoying Your Food Without a Sensory Fight


When you have Sensory Processing Disorder (SPD for short), eating can be a big pain. We get annoyed at how our food feels or tastes and push it aside or have severe reactions to food such as stomach distress, vomiting, or panic attacks.

So how do we help our bodies accept what we're eating and enjoy our food?

First, I suggest you seek an occupational therapist (or OT) who specializes in SPD and tell him or her about your food difficulties. The OT can help your body learn to enjoy food again through some simple therapies and the Wilbarger Oral Tactile TechniqueHowever, if your food difficulties are related to a psychological problem, then a psychotherapist is the one to see!

But my difficulties aren't bad and I can't afford an OT right now? What then?

All is not lost if you can't afford an OT yet. Below I have listed a few tips that you can do on your own to help move towards better eating experiences.

1. Learn to love your straws!


Many people with SPD find that drinking liquid, such as smoothies or shakes, from a straw really helps them. The straw gives them a great mouth sensation that can either be stimulating or soothing to the senses.

I really love my daily smoothie (which I drink with a straw). It helps me enjoy my breakfast and wakes my senses up in the morning.

2. Find the right texture mixture!


When I first discovered that I had SPD, Rachel suggested adding a variety of textures to my diet and I am forever grateful for her suggestion. At the time, I was struggling with what felt like sensory boredom; everything I ate had the same texture. So I tried adding a variety of textures, making sure each meal had at least one crunchy item, one smooth item, and one tangy or spicy item, and it really helped. This variety helped keep my senses engaged and made eating less of a chore.

When it comes to what textures fit you, you may need to do some experimenting. Add one texture at a time and make sure you take equal bites of each texture to add that variety that you need. Above all, stay away from textures that bother you. Some people don't like the feeling of crunch or mush between their teeth and have a negative reaction to the texture, so learn what you like and don't like, and don't be ashamed when you don't like something. If your body says no, it means no!

3. Activate or remove the power of touch!


Activate Touch:
 I find that I eat better when I can touch my food, so my favorite foods are usually foods I can hold in my hands, but sadly I can't just eat finger foods. Silverware is important, but I used to feel disconnected when I used them. I eventually realized that my mind was craving the sensations that touching my food gave me. Using children's forks, knives, and spoons that have little bumps or wiggles on the handles gives me that touch stimulation while allowing me to use silverware.


Also check how big your bites are. I feel really freaked out if I take big bites. It's like my brain says, "too many textures!" Using children's silverware forces me to take smaller bites, which removes that nasty sensation.

Remove TouchBut some of you are the opposite. If you don't like touching your food, then silverware may give you that space you need.

Whether you avoid touch or crave it, learn to wield the power of touch and it will help you enjoy your meals more.


4. A comfortable body is a happy body!


Bottom line, if you're not comfortable physically, your sensory brain won't be either. Same goes for eating. If you don't like your chair, the lights, the sounds, etc, you won't enjoy your food either.

I used to struggle with dinning room chairs. They were too hard and made me feel nervous, and then I discovered a fantastic sensory tool called The CoreDisk. Sitting on it is like sitting on a therapy ball. It gives me a comfortable cushion, allows me to rock gently (which soothes my senses), and it gives me a feeling of safety and security.

While you're sitting at your table, examine what you're feeling. "I'm squinting my eyes and I feel dazed"= maybe the lights are too bright. Or "I feel like I am not safe or about to tip over"= try putting your feet flat on the floor in front of you. If your body is comfortable, your senses will be calmer and it will help you enjoy your food.

5. Give your mind something else to do!


Sometimes I battle with food because my brain is obsessing over eating, which causes stress, making me feel upset. Augh!

So if your brain gets bored or stressed over the idea of eating, find a soothing distraction like a good TV show or a movie. Put on calming music in the background. Light some comforting candles. Play an audio book or play with a sensory toy such as a puffer ball or a stress ball. Anything that keeps your brain from freaking out over your food.

It may take a while and there may be days when you'll still have to fight through a meal, but hopefully, with some tips under your belt and a good knowledge of how your body works, in time your body will learn to enjoy food once again.

Well, that's all of them! These tips have helped me a lot in my struggle to enjoy my food and I hope they will help you too.


****
Annetta Nesler writes about her life as a young adult with sensory processing disorder at www.annettanesler.wordpress.com. She is passionate about helping those with SPD and she encourages everyone to reach beyond their limitations and pursue their dreams. Annetta is also a professional musician and has recently released her first CD.

Thursday, November 13, 2014

My Feature on www.themighty.com

I'm excited to share with you my latest published piece on SPD via The Mighty, a news-media website dedicated to sharing stories about disabilities, disorders, mental health issues, and the human spirit. In November, they're honoring those who've had an impact on our lives and made our unique struggles easier, and I chose to write about my first SPD friend and mentor, Dan Travis.



























You can find my article here.

Tuesday, November 11, 2014

A Sensory Bride: Three Years Later

The piece that follows is something that I had written back in December 2011 (a month after I got married) and only found recently, unpublished and waiting to be re-discovered. Back in 2011, when my husband/handler and I were planning our wedding, there had been nothing written about Sensory Processing Disorder and weddings - not much written about SPD by adults in general - and a sensory-friendly wedding was completely new territory. Considering that we had to make it all up - the venue, dress, and music that would fit my unique needs . . . even the email disclosing my SPD to our guests - I think we did an amazing job and had a wonderful day. 

Now that SPD adults are speaking out more often, we can work together to tackle the challenge of life events great and small. Amazing how much changes in just a few short years.

-Rachel

P.S. My husband/handler and I are celebrating three years this Thursday - talk about a timely finding!

****
On a support page for Sensory Processing Disorder, I recently came across a woman, perhaps a few years younger than I was, asking how anyone would ever date her with her SPD. You could hear the turmoil in her e-voice; the sensitive loner who craved a hand to hold in the face of her differently-wired brain. She proceeded to list all of the places she found difficult to comfortably sit and be herself without SPD backlash: restaurants, Broadway shows, concerts, wine bars, big parties. It was a litany of what non-SPDers would consider the bread-and-butter of their social lives – the social life this woman desired. I immediately responded to the thread:

I am a 28-year-old female diagnosed with SPD only last year. It took 27 years of misunderstandings and bombarding visuals, hysterical crying in the middle of soprano solos, ongoing spatial challenges and constant bruising, and seemingly endless guilt and shame to finally receive my diagnosis. I met a man nine months before I learned of my SPD, and now we are getting married in November! He knows some things are no-go for me, and he was willing to learn and take the time to understand. But in the past, and still - yes, dinners out are rough, parties are tough, concerts are impossible. Thankfully there are romantic nights in, movies, quiet apple orchards, small coffee shops, and walks on the beach :-)


I was proud of my response – equal parts encouraging and strong. Considering it was a month before my wedding, I saved all of my sensible Super Woman speeches for those requiring coherency. In reality, I felt like I was dangling precariously from a completely unraveled sweater. Granted, I have SPD, and on any given day, I can go from cool and calm to uncaged and uncomfortable in the blink of an eye (honk of a horn? Span of a large room? Feel free to select your favorite sensory metaphor). So it is with this disorder. It can take as little as a man speaking loudly on a tightly-packed subway car to make an SPDer’s skin crawl, and from there, the entire day can turn into a nuclear meltdown. Warning! Warning! Tears and anxiety imminent! Take cover!

When the dust settles and the reactor cools, I look back in surprise at these hours of disarray as if they aren’t truly my own, the work of a silent sensory doppelganger. She is still a mystery to me now after 17 months of this diagnosis; a sneaky saboteur that sidles up beside me just when I think I can let my guard down and relax. It’s no surprise that she and I struggle with relaxation – how can a person lacking a sensory filter remove themselves from their post of intense focus, especially when without this focusing, sounds and sights intertwine and fight for attention.

For those of you without SPD, I implore you to close your eyes the next time you’re in the thick of a very busy public location. Listen closely to every sound your ears can reach – the toddler cooing at their first red ball, the homeless man asking for change from the cold sidewalk, the screech and whoosh of an arriving bus in the distance, the businesswoman’s stiletto heels, and the echo of wind whisking past you. Hear them all as if they were right next to you, eager to dance up your spine and dive into the cavity of your ears, fighting to be categorized, recognized, processed all at once. Open your eyes now and scan the crowd. Trace the lines of every person who passes you, see each wrinkle in their jacket, every freckle on their face. Paint the lines of their hair. Now take them all in at once, and their surroundings, every dent and fold of flesh and slat of metal. They too want to be understood and puzzled together to form solid shapes; they too want to be filed in your brain at the exact same moment.

I envy those of you who can perform this exercise and then seamlessly flow back into your sensory-stable life. My days are a menagerie of these two sight and sound exercises, however they occur all at once. The toddler’s coo, screech and whoosh, freckles and wrinkled jackets all rush at me, like a sneak-attack of hundreds on a single, unarmed soldier. I never feel connected to any physical spaces I enter. The proprioceptive sense is harder to describe when it’s missing. It feels as if my feet never fully touch the ground, and I cannot find my body in space. It’s no surprise that I’m always displaying colorful bruises, unable to trace marks to actions.

A mere month before my wedding, I was terrified. (Not because of my choice in husband, mind you. With his penchant for humor, smiling eyes, and strong hands, my handler - now husband - embraced my sensory diagnosis. Often he spotted my doppelganger moments before me, and in the style of Temple Grandin, turned swiftly into a human hug machine.) How was I supposed to enjoy the day when it meant 140 moving bodies and voices scattered around a room, dancing to the thumping of music, reaching for me to take photos? A wedding encompassed everything I feared as an SPDer – complex and lengthy visual challenges, inconsistent auditory input, and a wide-open space in which I was one half of the center of attention. Yes, we could have chosen a tiny, crisp ceremony followed by a private dinner, but in spite of my sensory challenges, I am bubbly and vivacious, and love having dear family and friends at hand. Instead, we planned a wedding with a sensory-friendly-twist.

We selected a venue with expansive windows and calming views of the Atlantic Ocean, and to continue this sense of peace indoors, our colors were shades of light blue and sand. The photographer and videographer agreed to tuck away their harsh camera lights and stick to the soft glow of the space. The DJ received a list of sensory-unfriendly artists, and familiar requests, and agreed to keep the sound low. My dress was soft and comfortable, and my husband designed sneakers for us to wear during the party. We planned the entire wedding down to the smallest details.

Most importantly, I decided to reach out to every single guest, and admit to my SPD. I wrestled with feelings of embarrassment, inadequacy, guilt, and shame. But understanding can only begin when fear ends - why hide this condition anymore? Especially when it took most of my life to find a reason for my seemingly odd behavior. I deserved to be understood at last. I sent along definitions, descriptions, and resources for further reading, as well as a voiceless prayer to the universe for compassion and understanding. When given the chance to be merciful, people are beautiful and kind. I received emails from second cousins and family friends, near-strangers and close pals; all were touched by the sentiment, all praised me for my bold admission.  

The night before the wedding, I was completely unhinged in a way only an SPDer unhinges. It took the sheer loving force of my family to pry me from my bed, tie my sweater, and scoot me out the door to the rehearsal dinner of forty. My sensory doppleganger and I clung to the wall of the restaurant, and awkwardly received guests as they fought for our attention. A nerve-wracking situation heightens sensory sensitivity, and with a wedding a few hours away, I felt lost in a sea of people, voices, and well-wishes. My almost-husband, a sensory sage, squeezed my hand until my fingers were swollen, and kept me focused.


On the morning of November 13, 2011, I rose from lavender sheets into the bright blue autumn day. I took deep breaths and used my Wilbarger brush. I spun neatly into my billowy ivory dress and tucked blue hydrangeas into my hair. I met my handsome almost-husband on the boardwalk and we laughed and twirled before the lenses of cameras. Guests peeled away from their steps of arrival to embrace us, passers-by stopped to watch. We rushed to the ceremony space, marveling at the bubble of energy, grasping the hands of our parents and siblings in joy. While guitarists played, I walked down the aisle to meet my love at the chuppah, the wedding canopy, smiling nearly wider than my mouth would allow. My sensory doppleganger was present. She is always present. She will always be present. On the wedding day, however, she was decked in her finest attire; she sat grinning – wistful, hopeful – in the back row.  





****
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.





            

Monday, November 3, 2014

The Silent Sensory Marathon

Yesterday, I resolutely stood with my husband on the corner of Crescent Street and 42nd Road in Queens, New York, in the thick of a crowd of spectators with a red banner in my hands. In supportive black lettering, it read YOU ARE STRONGER THAN YOU THINK! To our right, an impromptu live singer and his garage band yowled the lyrics to every song I've ever caught myself humming under my breath: 867-5309, Centerfold, Every Little Thing She Does is Magic. To our left, a host of cowbell ringers kept their own rhythm, and before us, rippling like a neon sea, was a ceaseless surge of marathon runners. Some tossed green paper cups at our feet as they shuffled past one another, their names emblazoned across their chests, their paper bib numbers flapping against the forceful November wind. I was locked in a sensory menagerie. They were at mile 15 of 26.

Flanked by my husband/handler, I managed to wiggle my way through the somewhat stationary torsos and legs of onlookers to press myself against the thin, pink tape delineating marathon route from cheering section. This maneuver was crucial: my incredible younger sister was somewhere among the undulating forms passing by and I was the keeper of a vanilla energy gel that required a skillful hand-off. Plus, I wanted to give my superstar a hug.

As the drummer signaled the start of yet another song, I painfully squinted through my blue-tinted glasses out into the abyss of bobbing forms and shook my sign uncomfortably. I caught the eye of a woman who looked defeated and forlorn, whose running had slowed to a stilted jog. In spite of the unseasonably cold temperatures, her forehead was glistening with sweat. She weakly looked down at my sign as she passed and back up at me. "I can't do it" she mouthed as she trotted past my shadow. She looked like she was forcefully holding back tears. "YES YOU CAN!" I shouted from the sidelines. "YOU ARE STRONGER THAN YOU THINK!" She mustered a weak smile, turned back towards Crescent Street, and picked up her pace. I had the same interaction with a man in a striped hat a few minutes later, and a few minutes after that, a pair of women in matching yellow shirts.

Easy for me to play sidewalk Yoda standing pretty on the street corner. I wasn't running a marathon. Stronger than you think, you are. May the Fartlek be with you.

As a fifth person glanced down at my sign and back up to my face with a grin, I realized something important. We're not all that different, those marathon runners and I - marathon runners and adults with SPD . . . marathon runners and anyone with a hidden disability, really. What's a marathon after all but an arduous, long-distance race? It takes dedication, focus, and drive to train for it, and it takes superhuman courage and confidence to complete the route.

SPDers know a thing or two about superhuman courage and confidence.

Imagine stepping foot into a world every single day in which the things people normally take for granted - sounds, sights, smells, tastes, movement - are warped and unapproachable. Envision lunging away from an oncoming subway, hands pressed desperately over your ears before the commute to work even begins. Picture the myriad of faces across the platform, the jerk and thrash of a train as it pulls into a new station. Notice the ceaseless hum of fluorescent lighting above your desk, the sound of Debbie from Accounting who sneaks up behind you each morning and cries "goooood morning, sunshine!" and the unidentifiable smell of lunch wafting from the company kitchen. Now pretend that each hurdle - every tiny sound and sight and unexpected burst of conversation - doesn't send you into an emotional, physiological tailspin of detachment, clammy hands, and racing heart, and deny the recitation of haunting, ancient mantras of self doubt. Work as if that's all you're focused on. Visualize passing on plans at the end of each day because you're bone-weary from seemingly benign things - brushing your teeth, picking up groceries, contending with sensory activities great and small. No one else sees that in actuality, you're actively engaged in keeping calm and reaching the finish line.


We are constantly running, we SPD adults. We are in perpetual motion, vacillating toward and away from sensory stimuli in all areas of our lives.  Our silent sensory marathon begins the moment our bedside alarms wail and we startle out of sleep, sometimes shaking and tearful, and ends the moment we slip back underneath our weighted blankets and curse the tiny ants that march underneath our skin for keeping us wide awake. We push ourselves to the brink sometimes doing the things that most people take for granted. We do them because we have no other choice but to run the route of our lives, in spite of our differently-wired brains. We must keep pace with our fellow humans. We actively want to meet our goals.

And so perhaps this is why, smashed between strangers and gazing outwardly at the carnival of sights and sounds and motion, I so actively shook my sign and tried to meet the runners' eyes in spite of my own discomfort. I had a very important message to share with those whose belief in themselves and their abilities had momentary lapsed.

We are stronger than we think. Take it from someone who knows.



Thursday, October 30, 2014

Talk About Your Medicines Month and SPD


I was approached by the American Recall Center last week to write a piece for Talk About Your Medicines Month related to Sensory Processing Disorder. The Center works to provide people with information on drugs, recalls, and associated healthcare concerns. My reaction, of course, was a smile - there are no medications for SPD. There is no magic pill we can pop when we succumb to the din of sound that throbs just beyond our ears, and there are no tonics we can take when the agitation and discomfort of the visual flow and the ever-undulating ground refuses to subside.

The lack of medication for SPD is met with mixed reactions from the SPD adult community. There are always SPD newbies who eagerly ask me SO! What medicine can I take to make this go away?! In our instant-gratification culture, this is not a surprising reaction. Fix me now. Make me fine. Force quit and restart. Others scoff at the concept of medication and are pleased that the treatment for SPD is filled with exercises, tools, and techniques to strengthen the senses and - especially in adulthood - restructure our sense of self and our perceptions of the world that have caused us so much trouble in the past.

Just mix and serve ASAP
via www.andbethere.com 


I must admit, I fall somewhere in the middle of these two extremes. Who of us with a chronic, hidden disability doesn't wish that they could just wake up and be 100% fine thanks to a pretty purple pill? If given the chance to rise from under my 17 lb. blanket for the last time if it meant medicine, wouldn't I say yes? I think so. If someone developed a daily regimen of powders and potions to temper the senses, wouldn't I try it? Probably. This becomes even more complicated for adults with SPD who, after decades of misdiagnoses and lack of proper SPD treatment, have taken on a host of psychological disorders ranging from anxiety to depression, personality disorders to eating disorders. Some of us are on medication for these secondary conditions related to our SPD. I'm not ashamed to admit that the 2.5 decades before my diagnosis were filled with suffocating anxiety, and now I am diagnosed with Generalized Anxiety Disorder as a result of my untreated SPD (provoked by my SPD? As I always say, the jury is still out on how these disorders interact with SPD in adulthood). I take a benzodiazepine before bed to calm my ever-racing mind and pulsing skin. As my sensory experiences can feel like anxiety attacks, this especially makes sense to me.

Happy Pill is Happy


But to treat SPD? No. We don't have traditional medications with which we must be concerned. I suspect this is partially because our understanding of SPD is in its infancy. In the past year, researchers at the University of California, San Francisco have undertaken two especially groundbreaking studies in the basic understanding of SPD: one on the structure of the SPD brain vs. the neurotypical (non-SPD) brain (2013) and the other on the structural differences between the SPD and Autistic brain. In 2013, SPD was passed over as a disorder for the DSM-V, the text that classifies mental disorders in the United States, mostly because there wasn't enough scientific data to prove its existence. Doctors and mental health practitioners alike still struggle with whether or not they believe that SPD exists. (It does, I am living proof.) In the midst of all of this learning and doubt, we are nowhere near the development of any sort of medication.

The good news: that's OK. The SPD Foundation, the leading organization in SPD research, education, and awareness, recently released preliminary results suggesting that their model of treatment (Occupational Therapy + parent education and coaching) is highly effective in treating children with SPD. For those of us who managed to creep past the typical childhood diagnostic age for SPD, there is Occupational Therapy, Psychotherapy, and Physical/Vision Therapy to help us combat our darkest sensory evils. Instead of pills, we have things like Wilbarger brushes, fidgets, weights, visualization, deep breathing, and silly walking exercises that never get old.

A world in which my "medication" takes the form of a furry turtle figurine I endlessly toss between my fingers? Not so bad after all.

Fidget-y goodness by Kelly Dillon of Eating off Plastic


****
You can learn more about the American Recall Center and their work here and here.

Wednesday, October 22, 2014

Coming to My Senses is on Pinterest!

Coming to My Senses is finally on Pinterest!





Come follow me and learn more about adults with Sensory Processing Disorder.

Click here: http://www.pinterest.com/coming2mysenses/

Tuesday, October 7, 2014

The Neurotypicals' Guide to Adults with Sensory Processing Disorder

Dear Neurotypicals Who Love or Know Someone with SPD,

In honor of Sensory Awareness Month, this post is for you.

It's a very common theme among SPDers, especially on our group threads: how do I explain SPD to those who love and care about me and who truly want to understand? This is not the same kind of explaining we do when people just don't understand SPD or don't care to try. It's not defensive. There are no excuses. It's the explaining we do when someone says to us, with all sincerity - "I love you, I appreciate you, I want to know more about what SPD means for you so that I can fully support you."

First of all, HOORAY FOR YOU! In a world so swiftly moving towards the acceptance and understanding of the most diverse groups of people, you are one of the open-minded, kind-hearted who dare to believe that we are more than just our diagnoses or our struggles. If blogs allowed me to hand out gold stars, I would be pressing one into your hand as you read this. Perhaps this will suffice. And yes, it's the lick-and-stick kind from childhood: 

Feels good, huh?

We SPDers are lucky to have individuals like you in our lives to remind us that we have inherent worth beyond all measure. 

Let me caution you that what I'm about to write isn't everyone's complete truth about SPD. All people of all backgrounds experience the world through slightly different lenses. As Albert Ellis of the REBT school of psychology believed, we are the products of our upbringing, our culture and family, our environment, and our circumstances. We all see the same world slightly altered by our perceptions, and although these perceptions are often warped and need to be re-evaluated, they are ours and ultimately no less valid. My experience of SPD, while "typical" is not necessarily the only and final word on the disorder, although it's as good a place as any to begin. 

Think of this post as your cheat-sheet. It is your peek into the world of SPD. And hey look, it's neatly numbered too! Just might be your lucky day. 

1. We all are sensory beings.

Your local butcher, the woman next door, the President, even you - we're all sensory beings. Feel the breeze on your face? Hear the sound of chiming bells in the distance? See the flock of birds spiraling across the sky? Congratulations, my friend, you are human, you engage with the senses. Our senses usually work to help us understand the world around us. Siren blaring? Pull that car over, you might just be getting a ticket. Lose your balance on the subway this morning? The conductor probably hit the brakes too hard. Something crawling on your arm? Quick, flick it off. Stupid fly. 

2. We all have eight senses (YES, eight! And the sixth isn't seeing dead people, sadly).

You ready for a list? Hang on tight. These are non-negotiable.


  • Visual System (sight)
  • Gustatory System (taste)
  • Olfactory System (smell)
  • Auditory System (sound)
  • Tactile/Somatosensory System (touch)
  • Proprioceptive System (muscle/joint movement, where body is in space)
  • Vestibular System (balance)
  • Interoceptive System (state of internal organs)


3. SPD is like a neurological traffic jam in which the senses don't work properly.

Credit goes to the Occupational Therapist, Developmental Psychologist, sensory pioneer, and all-around superwoman A. Jean Ayres for the beautifully-worded analogy above.

For those of us with SPD, the wiring in our brain is different. (Want to know how? Check out the groundbreaking study by UC San Francisco, 2013.) Because of these differences, we sometimes feel input from the senses more than you or less than you, or we don't notice the input at all. Imagine that the sound of people talking one table over at a restaurant is so loud that you have to strain to hear the person sitting right next to you. Envision the fluorescent lights at a supermarket being so bright that you have to squint to read the names of the products on the shelves. Picture walking into furniture in your path because you cannot, for the very life of you, figure out where your legs end and the world begins. Now imagine all of these amazing things happening at once, vying for your attention. BEEP BEEP, HONK HONK. Where's a traffic cop when you need one?

4. SPD is also like a soundboard, except the sound technician is terrible at his job.


Hand of a failure


Welcome to my favorite SPD analogy. Imagine a sound technician working a soundboard like the one above, but he clearly has zero training. Some toggles are slid too far up, some are slid too far down, and sometimes he's just on a perpetual coffee break and doesn't give a treble about what's happening on stage. SPD is that haphazard soundboard and that ill-hired technician all in one. 

SPD is so complex and varied, and each adult with SPD experiences each sense differently.

For me, for example, the toggles for sound and sight feel like they're pushed way up. I hear almost every small sound within earshot all at the same time, which can make outings like parties, concerts, theme parks, and zoos absolute nightmares. SO MUCH NOISE! NO END IN SIGHT! I see things similarly. When I'm feeling overwhelmed, it's as if my eyes are taking in even the tiniest details within my field of vision - every shadow, every nook and cranny fight to be recognized by my brain through the portal of my eyes all at the same time. For me, sound and sight are always in competition. Sometimes I think to myself - so, do you want me to hear or to see? Cause I sure as hell can't do both at the same time. 

However, my toggles for touch and proprioception are pushed way down. I give massive, engulfing bear hugs, and I demand them from pretty much anyone in my immediate vicinity. I hug landlords and dear friends, the woman who threads my eyebrows and my family. They must be deep, tight, and lengthy or it feels as if they haven't happened at all. I am always fidgeting - softer, textured, and cooler objects get the most love from my fingertips. I also am perpetually looking to crunch on crispy foods and crash my body into solid objects (sometimes I'm not looking to crash into solid objects but I am mysteriously covered in bruises anyhow).  I am known to drop eggs and knives at the most inopportune moments. My body is constantly asking itself - where am I? 

When our SPD gets out of hand (in SPD-speak "dysregulated"), our sound technician is essentially asleep at the soundboard, and the toggles have slid all over the place. When we use tools, exercises, and techniques from occupational therapists, physical therapists, and psychotherapists, our sound technician is *actually* *getting* *the* *hang* *of* *his* *job* - and our toggles are more evenly spaced. If lights are our problem, they feel less bright. If sounds are our issue, they feel less loud. With the right combination of help, the things we typically avoid, we avoid less, and the things we usually crave, we crave less. 

Score. 

5. SPD causes extreme emotional and behavioral responses.

Imagine that I'm your favorite little sibling and I am poking you square in the eye. Repeatedly. Without stopping. POKE. POKE. POKE. POKE. At some point, wouldn't you feel irritated? Wouldn't you feel angry? Wouldn't you scream and shove the little twerp out of your way? Wouldn't you maybe avoid my pudgy finger in the future? Wouldn't the mere memory of my incessant poking cause you some visceral reaction of frustration and irritation? Stupid kid, you'd grumble to yourself. 



*POKE*
(via The Pharp)

When things annoy us neurotypicals and SPDers alike, we have an emotional reaction to them and then we have a behavioral response to them (in the example above, we get frustrated and we pull away). Because we SPDers can't process sensory input in a typical fashion, most of the input we receive from the senses makes us feel like we're being endlessly poked in the eye. It is supremely distressing. SPDers tend to become emotional in the presence of too much sensory input and also have a behavioral response. We yell, we cry, we flee the situation, we lay down on the floor, we bite people and things, we reach for our fidgets and talisman and anything to help us just get through the moment. 

For those of us diagnosed with SPD in adulthood, we've spent decades not knowing why we felt this way in moments when our parents, siblings, friends, and significant others were having no issues and saw no problems with a situation. If you and I were in a room together during an earthquake, I'm sure our reactions would be similar. Fear would pulse through our bodies, we'd feel off-kilter together, perhaps we'd shriek or duck under a table. Our twin reactions would be warranted. They'd make sense. But imagine being the only one reacting to a situation that others don't even think twice about or notice. Envision clamping your hands over your ears and running out of the room - all in response to something seemingly benign - as everyone else looks on with judgment and in surprise. 

6. What's benign to you isn't what's benign to an SPDer. 

Our emotional and behavioral responses to what are thought of as "common," "easy," and "problem-free" situations (a picnic, an office holiday party, the library, a department store) - while warranted based on how we're feeling internally (sometimes terrible) - look out-of-place and blown-out-of-proportion to those on the outside. Who fears the circus? Who shies away from a dinner-date? Who finds outdoor summer movies excruciating? Who is terrified of the local beer garden?

We SPDers.

Fun things are not always benign.

SPD is much like that little pesky sibling I mentioned in #5, except we're being poked and prodded almost all the time, even in moments deemed "enjoyable" by the neurotypicals in our midst. If the event engages our most sensitive senses to a point beyond our comfort level (read: that final sibling eye-poke before you lose your cool), we will often refuse to participate in the event or we will be forced to work supremely hard to keep ourselves feeling as well as possible during the event. (This is more taxing and overwhelming than I have room to properly explain in this post, so take my word for it). All of this while our brain's faulty wiring is sparking wildly, our emotions are overflowing, and our gut is telling us to run away/hide in the corner/punch the waiter. 

There's only so much eye-poking one can take before one loses it completely.

7. What's enough for you isn't what's enough for an SPDer.

Some of our senses are less sensitive. Like I said earlier, while I might avoid situations that challenge my visual and auditory differences, I will often actively seek input from tactile and proprioceptive sources. I will go overboard trying to find my daily hug if my husband/handler is out of town, and if I spend an entire day without that deep-pressure touch, I will be emotional and enact certain behaviors. (In this case, I'll probably cry and then "hit the deck" - my favorite term for pressing my entire form against the floor to attempt to connect with my body.) 

In some ways, this is like the opposite of the eye-poking analogy I brought up in #5. Here, we are almost asking our irritating sibling to just go ahead and poke us square in the eye and never stop. Please, we beg them, it's somehow comforting and we'll stop taunting you in front of your friends if you just continue. It's a counterintuitive statement, but we sometimes need input from particular senses or we feel completely empty and devoid of their properties. 

Think about the soundboard again for a second. If certain toggles are slid down too low, the concert is missing crucial components (you know I'm all about that bass). All toggles need to be somewhat aligned for a being to feel in harmony, and because some of our toggles are too high and some are too low, we are desperately seeking balance. 


8. SPD adults often have other diagnoses as well.

Because we didn't know what was going on with our systems growing up, and because we so often thought that we were just being crazy/strange kids, teens, and young adults due to our reaction to those "benign situations" I mentioned earlier, we learned to fear and avoid many places and activities in the event we'd feel uncomfortable. When our emotions and our behaviors have no noteworthy origin or cause to point to ("I feel awful because of X"), we're left pointing at ourselves ("I'm a bad person, what's wrong with me, I'm to blame") and pointing out into nothingness ("this scenario is to blame"). We feel anxious and depressed and we assign deep meaning to the wrong things. Anxiety disorders and depression are supremely common secondary diagnoses for adults with SPD, but our issues can span the gamut. One person's discomfort having food in their mouth (hey, gustatory system) can look like an eating disorder while another's swinging moods (what's up, dysregulation) can look like a personality disorder or a mood disorder. Some of these diagnoses exist on their own, some are SPD in disguise, and some are hard-wired patterns from decades of misunderstanding. If you ever sort out which is which, give me a call. You surely win a prize. 


9. SPD adults thrive with multiple levels of treatment.

Most people assume that SPD means occupational therapy, and they are partially right. OT is the place for SPD adults to begin their diagnostic journey. It's the place where we're given our diagnosis, we're put on a "Sensory Diet" (exercises, tools, and techniques to help regulate our sensory soundboard), and where someone says, usually for the first time - hey good lookin', you're not crazy, you're just wired differently. It's a truly incredible experience, one that is many years in the making for most SPD adults.

Here is where things change for the adult SPD population. 


It's time for yet another analogy


We SPD adults have lots of eggs in our sensory baskets (oh god, I hear you thinking, yet another analogy, Rachel?! Yes. Shut up. I have a plan here). When we're kids, we don't have a whole lot going on. We go to school, we come home. Maybe we have a playdate or two. Our brains are still growing and forming connections (a thing we call "neuroplasticity") which means it's easier for them to be rewired. Our SPD is in its infancy - it's purely an uncomfortable internal feeling paired with a behavioral response (the classroom is loud so I will act out). There's little emotion involved from a thinking and rationalizing perspective ("I must be anxious because . . ." is a phrase I hope SPD kiddos don't utter). Families and schools swoop in, the kid lands in the talented laps of OTs, and all sorts of rewiring activities are undertaken. There are swings and beanbags and balls and discs. If kids have maybe just a few eggs, they're placed in one basket, and that's fine. It only takes that one basket to tweak what needs to be tweaked, and many kids can make so much progress in OT that they nearly grow out of their SPD diagnosis - YAY! 

Adulthood is another story. We have a whole lot more eggs. We have responsibilities in multiple spheres:
  • Work
  • Social
  • Romantic 
  • Familial
  • Financial
Not to mention the ongoing development of self through activities that help us grow and bring us pleasure. That's a lot more eggs than we had in childhood. We've misunderstood our own selves for decades, others have misunderstood us as well, we've assigned emotion and meaning to our discomfort and behaviors, and tada - what was once a few eggs is now a good few dozen. In my experience, it's always best to diversify those eggs. 

Through trial and error, I came up with what I call the Tripartite Model of Adult SPD Treatment, which basically means that I believe three major types of therapy can have a huge impact on adults with SPD - the same way one type of therapy has a huge impact on kids with SPD.
  • Occupational Therapy - for diagnosis, tools, and tricks (Sensory Diet)
  • Physical Therapy/Vision Therapy - for the strengthening of individual senses
  • Psychotherapy - for secondary, related diagnoses as well as for learning to accept SPD
The adults most successful at managing their SPD have been to most if not all of these three therapies. Now if only insurance would understand the need to cover them . . .

P.S. I could go on for days about this model, so email me if you have any questions or want to discuss it further.

10. Our tools and tricks may look funny, but they're effective.

I wear blue tinted glasses most of the time because they help me process visual information. I play (ahem, "fidget") with fur-covered statuettes shaped like animals because they feel good on my fingertips and help me calm down. I sleep under a 17 lb. blanket because it helps me understand where my body ends, and so I can rest enough to fall asleep. I tote around two different decibel-levels of earplugs at all times. 

Normal? Not really in Neurotypicalville, quite common in SPD Land. Helpful? Yes. One hundred times, yes. Worrisome for you? Nope. We do what we can to keep our senses regulated, and these techniques, among others, are highly effective.

11. We're not that different from you . . . and yet, sometimes, we are.

You know this already, remember? I gave you a gold star for your open-mindedness, and I truly believe that nothing I've said here is too bizarre or complex to grasp - surely nothing is beyond your warmth and kindness. In a world where we all engage with the senses to some degree, SPDers just engage with them a bit differently. They can be overwhelming or underwhelming, they can cause emotions and behaviors to surface, and we have therapies and ways of keeping our unique needs at bay. We still get up in the morning, brush our teeth, and make breakfast. We love our families and friends. We work hard and we play as hard, when we're able. Somewhere in between, though, things get a bit iffy for us. We feel overwhelmed, we get scared, we fight against that very old, negative voice inside that says - hey wackadoodle, you are strange

Know an adult with SPD? Love them? Care about them? Just be you - an educated, nurturing version of yourself. Ask how you can support them and let them guide you. Don't question their methods, just understand their purpose. 

Hey, if it helps, I know you can.