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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. 

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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.


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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!

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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.  





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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.