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Thursday, September 20, 2012

My Kingdom for Earplugs

A few weeks ago, my entire family was slated to attend a wedding for a childhood friend. An evening wedding, I should say, with the guest list exceeding 250 people. And a live band. Not exactly my favorite set of circumstances. Also, not traditionally my most comfortable and successful type of situation. Three years earlier, I was at the wedding of this bride's sister, and yes, I experienced rolling sensory shutdowns throughout the course of the night until, mid-dessert, I exclaimed enough torture, and I left. At the time, I had no SPD diagnosis. There were no tools to rely on, no sense of understanding - of the self or by others. Brushing was what I did with toothpaste to my teeth twice a day. Gum was for bubble-blowing. My diet involved eating less cookies. You get the picture.

Based on my previous experience, I wasn't sure how this event would go. I planned as if I was confident in my abilities. I picked a 1950s Mad-Men-esque dress (Joan would have been proud), and painted on my prettiest I'm totally normal face. My heart may have been thrumming in my chest but I looked mahhvelous. Thankfully, my date to this soiree was my loving husband, who has made it his mission to be my handler. Not unlike a Big Apple Circus tiger or a stumbling celeb, we SPDers need handlers too, sometimes. (We can be as pissed and as klutzy as our counterparts.) My goal was to last as long as I could, and as comfortably as I could, without a meltdown. Or, if I didn't have a choice, to stay until meltdown and then be whisked out the exit with my hand deep in my husband's palm.

The ceremony was in the sanctuary of a large, Long Island temple. Rows upon rows of wooden benches perched pew-like before a bright stage. The main aisle was bedecked with twinkling trees and pillars with vases. Everyone who entered before us rushed, in tandem, to sit by the aisle. After all, it is the bride's path. Ever the SPDer, I veered us to the right, and grabbed a quiet bench on a brideless aisle. No one sat behind us, and no one sat in front of us. It was perfect. All sounds came from one obvious location - the ceremony.

My husband and I were two of the first people into the cocktail hour, where we snagged a private table in the back corner of the room. My family filled the table, and I stayed seated, marveling at my ability to keep my cool, even in a jam-packed room of hungry Jews. Instead of going to visit the food stations, my family and husband lovingly brought the food to me. Very Mountain and Mohammed.

My greatest success, however, was at the actual party. Wait, I hear you saying. What? Yes. You read that correctly. I took a few breaths as I attempted to adjust to the massive ballroom. The band was already in full swing as we found our seats. I was alert and coherent - a big plus, and not always typical for 9:30PM. Once the hora - the whirling, twisting, messy Jewish celebratory dance - began, I ducked out of the room and took the opportunity to brush. A regulated SPDer is a happy SPDer, and nothing makes me feel more jittery than the dizzying hora. By the time I returned, the regular dancing had begun. I sat back down at the table. The music was already starting to bother me. I felt the trumpets somewhere between my ears and the top of my head. A gentle ache. I reported this to my husband-handler, and he said - earplugs? Or, rather, he shouted this, as our table was right next to the speakers.

Earplugs. The only reason I sleep at night. They had come in handy in August, when after a birthday dinner for my grandpa-in-law ended sometime after 11PM, and the transition from restaurant to humid outdoors made my skin crawl and my eyes tear. Putting them in instantly calmed me down.

I put in the earplugs, and the press of wedding band blended into a mild, background haze. I marveled. This is what normal people (Normies, of course) must experience on a daily basis. The ache in my head quickly dissipated. I felt uniquely more attached to the ballroom, more grounded - even in my unsteady heels. I blinked and waited, assuming the shutdown was still not far from reach. But instead, something crazy happened.

I had the urge to dance.

Dance. Me. Wedding. Night. Not to get all Tarzan on you, this was a VERY big deal. So my loving handler and I stood up and approached the corner of the dance floor. Dancing felt amazing. I spotted my parents in the crowd. Wide-eyed and grinning, they pushed their way through the moving bodies to dance with us. The look of joy in my mother's eyes was about how awesome it felt for me to be dancing at a wedding. For 45 minutes, we jumped and shook and wiggled our hands in the air. (We're not the best dancers.) My sister and her boyfriend joined us, in complete shock and awe. For nearly an hour, I felt like every other person at that wedding. I felt like a Normie.

So when my husband and I left, just before dessert, sometime between 11:30 and midnight, I was Cinderella sans pumpkin. Energy pulsed through my body. We waited for our car and chatted with other guests. Not one person in that room would have ever guessed the things I deal with on a daily basis. I wore no scarlet letters. It is something I have already placed tenderly in my arsenal of tools - the time I went to a big evening wedding, put in earplugs, and felt like everyone else. The night I was just another face in the crowd.

Wednesday, September 12, 2012

Scholarship Award and Sensory Spectrum Daily

I have some lovely news on multiple fronts to share with you today!

Yesterday, I was informed that I won a scholarship to help me pay some of my student loans. It is my work experience with adults and adolescents with learning disabilities that made me a unique candidate for the award. The letter stated:

"I am pleased to inform you that you have been selected as the winner of the 2012 Sally R. Schneider Scholarship. Congratulations! Ms. Schneider’s family was impressed with your application, and your commitment to working with adults and adolescents with disabilities resonated with them."

Absolutely a feather in my academic cap (watch out, resume, here I come!)

In other news, I have been set up to receive google alerts about SPD. This means that whenever someone posts about SPD, I am immediately linked to their news story/blog post/forum comment. Yesterday, my google alerts lead me to a yahoo question by an adolescent with SPD-like symptoms. She complained of specific auditory sensitivities, as well as tactile issues related to clothing. Classic SPD. She was asking for any validation that what she was feeling was normal. One response suggested she get her hearing checked. As always, that got me all riled up. Further proof that our society needs more education and to conduct further research on SPD, and fast. I took the opportunity to answer her post, providing many online resources, and suggesting she visit an OT for an actual diagnosis. She seemed pleased with my answer and considered the question closed.

Ever the (new) Twitter fanatic, I tweeted a link of the post to the Twittersphere, and today, I was happy to learn that The Sensory Spectrum picked up my story for the Health section of their daily newsletter.

Check it out at: http://paper.li/SensorySpec/1334939396 - mine is the second story in the Health section.

And if you've yet to find me on Twitter, now's the time. I'm @Coming2mysenses.


Thursday, August 23, 2012

When SPD Gets Bad Press

The other day, I was doing some research for a part-time job, and I came across this article from Disability Scoop (a few months late, but what can I say, it's a busy little life!)

http://www.disabilityscoop.com/2012/05/29/merits-sensory-disorder/15738/

It discusses how a group of pediatricians were questioning the merits of diagnosing children with SPD. The American Academy of Pediatrics said clinicians should be looking for other developmental and diagnosable conditions instead. This is, in part, due to the American Psychological Association's inability to insert SPD into their DSM-V, leaving those with this condition without a proper method of diagnosis. How sad it is that we and our children have this condition, and yet the scientific community is still baffled by its very existence? As they say, you need experience to get experience. Similarly, it seems the scientific community needs proof of SPD to begin properly studying the condition. Proof, I may add, that they cannot get without definitive scientific research.

As a formerly misdiagnosed person with SPD, I was livid to read that even now, a time when Spectrum disorders are highlighting the sensory needs of so many children, doctors are still wavering with the SPD diagnosis. This misdiagnosis cost me my childhood and adolescence. It cannot continue to negatively impact the lives of our next generation.


Tuesday, April 3, 2012

Past Five Months in Review

Wow, it's been a long time, hasn't it? The past five months have been complex and wonderful in turn; a labyrinth of tricky situations, life-changing moments, and the complexity of the daily grind.

In November, we had the most beautiful wedding. As planned, the room was sensory friendly with calming shades of blue, no unnatural lighting, and equipped with an understanding DJ who checked in with me periodically on sound levels. It was possibly the happiest day of my life, partnering - officially - with my other half. By the very end of the party, I felt safe and accepted. It was as if I had casted off all vestiges of my SPD, and I danced and celebrated without a care. He and I took a simple honeymoon in Vermont, and spent most of the time being pampered at the hotel's spa, which felt amazing after the year of stress we had endured.

Since then, I've been sick twice, progressed through two marking periods in school, and my husband lost his job. It's been a challenge to stay positive in general, and especially difficult to keep my SPD and related anxiety in check. With tough times comes a necessary sensory withdrawal.

Perhaps one of the most valuable things I have learned in occupational therapy is giving myself permission to say no to an event when I feel uncomfortable attending. Although the habitual guilt and shame follows the decline of an invite, I know logically that I am respecting myself and my own limits. During especially trying times, I have noticed my SPD symptoms are heightened, and my anxiety blooms. It is at these moments that I must especially stay true to my honest feelings. If an event pushes me beyond my comfort zone, and I am unable to feel grounded and sensory-stable in a situation, it will discourage me from attempting similar outings in the future.

In some ways, this goes against most of what I learned in psychotherapy, where persistent challenge reaps rewards. With SPD, I am learning that it's okay to have limits during more tenuous times, and to work within them to live my best life. I have also learned, through my early years of a different diagnosis, to read my abilities, and push myself beyond bounds when feeling stronger. It is a push-pull - hard for me to explain to others, and I presume even harder for others to understand. It's tough to say to someone: hey, today is a good day, let's push my limits, and equally so to say: hey, I'm not feeling great today, let's find a way for me to step back. Not feeling great, what do you mean? I've been asked. It's hard to explain. My personal understanding of SPD and my newly-reframed world is still in its toddlerhood.

In time, I hope to develop a better vocabulary to be able to explain these pendulum moments to others. I also hope to continue working on my own feelings about my 'unique needs.' I still wear the guilt and shame of being 'different' and 'difficult' like an itchy sweater. Hopefully, in time, I will learn to be kind to myself with reckless abandon. Until then, a few steps forward, and a few steps back.