Thursday, December 26, 2013

Rehabilitation - an SPDer's Next Frontier? (Rehab #1 - Vestibular)

A few months ago, my mom - in an effort to help herself overcome a post-concussive state - began vestibular rehabilitation therapy at a well-known physical therapy program. Her issues are not too dissimilar from mine - although hers focus on trouble with balance only while mine span the sensory gamut - but when she described her super-SPD daughter to the physical therapist, it was clear that all parties thought I might benefit from some vestibular and proprioceptive exercises.

Who knew that there were specialists trained to strengthen the senses? I sure didn't have a clue. I was under the impression that occupational therapy was the nexus of SPD treatment. Don't get me wrong, I am a huge fan of occupational therapy for the improvement of SPD symptoms. It was the place where I received my SPD diagnosis, used my first Wilbarger brush, and learned that my urge to fling my body against all sorts of surfaces was "normal" (for an SPDer, at least). It helped me establish definitions crucial to my current state of self-understanding: "proprioception," "fidget," "shutdown" - to name a few. It helped me learn to function in the world in which I exist with the condition that I have. And yet, I felt like the treatment was lacking an unnamed something. This could have been because as an adult, I couldn't use the tiny swings and spins and wheels and mats designed for small bodies. I had no real way to strengthen those neurological connections that all resources promised me could be strengthened.

Enter rehabilitation.

I attended my first session of vestibular rehab on a Friday a few months ago. Nervous as I always am to travel anywhere new, I felt a bit out-of-sorts as I waited for my appointment - early, per usual. The physical therapist was a calm, friendly woman, and she whisked me through a quiet corridor into a private OT-meets-doctor's-office style room. The fluorescent lights were off, and the room was saturated by the sun alone. For the first hour, all we did was talk. Although I've been in psychotherapy since I was 14, and have told my SPD tale of woe many times to anyone who will listen or read (hello, like you!) - the entirety of my SPD life poured out from deep within over the course of the hour. I tripped over myself relaying every minute detail. I laughed. I sobbed. The PT took extensive notes and asked very pointed questions related specifically to my issues of balance and proprioception.

She gave me an exercise to try, and I stood in the corner, arms crossed across my chest, eyes open. I learned that we use our sight, as well as proprioceptive input, to stabilize our balance, and so to make the exercise more challenging, the PT asked that I close my eyes. I instantly felt a shift in my balance. Nothing overtly significant, but it felt as if my ear and brain were forced to work harder to keep me from tumbling onto the floor. She then told me to open up my eyes, and to stand on a squat blue pad closer to the wall. The ground underneath me became squishy and I felt completely disoriented. I learned that by taking away direct proprioceptive input (the firm ground), I was challenging my vestibular sense. The PT asked me to close my eyes, so that my vestibular system had to work completely alone, without visual or proprioceptive support. In an instant, I could not tell if I was standing or laying down, and it felt as if my brain was flipping back and forth between the two options, discombobulated. She had me step down off the pad, and I marveled at how connected I felt to the ground - a rarity for me with my proprioceptive issues. I was told to do the first exercise twice a day until our next appointment.

Since the summer, I've been to see my vestibular rehab specialist twice. My balance and proprioception issues are showing improvement, and aside from a classic SPD crash-fest I had earlier this week (in less than 24 hours, I dropped a steak knife into my foot; broke a beautiful glass wedding photo frame; and lost my grip on a full cup of water, which spilled onto two computers - I blame a rapid, unnatural shift in temperature and air pressure), I am feeling much more grounded and have noticed significantly less bruises on my arms and legs. My sessions are spaced out much further than most who visit this center - they have acute brain injuries from accidents, and I just have a differently-wired brain. My rehab specialist posits that tiny steps across a larger span of time will be more effective for me in the long run.

I now have newer, more challenging exercises. I have to walk a long corridor daily while turning my head left and right, as well as up and down. A quirky soldier in an army of one, I march each night, focused, surveying our only hallway while challenging my eyes and ears and joints to become stronger. On the couch, my husband nonchalantly sits watching TV. He's used to my evening meanderings in the dimmed light of our living room, my noisy slipper steps echoing against our wood floor. When I finally join my husband, I must first stand, mummy-like and glowing against the flickering of the screen. I count - one Mississippi, two Mississippi - until my work is done, and I can be released to his waiting arms.

Tuesday, August 20, 2013

Photographic Evidence

Take a look at this photo of me, my sister, and my cousins from 1989. I'm the bangs and bow in the front row, in case you weren't sure. How could you know? Well, for one, I'm the only one making that face on what other (read: neurotypical) kiddos would call a fun ride. My cousin, waving carelessly into the summer air, is holding the wheel, as am I, but where his arm is slack, my arm is taught. I am clearly hanging on tightly while the car spins round and round, my smile stretched thin. It's a strange feeling seeing this photo 24 years after it was taken. I have always been a camera hog, seizing any moment to purposefully pose in full, gleaming grin. But here, this little girl, she's unaware of the camera and the photographer. She's so clearly scared and uncertain.

Where am I looking? Out somewhere, into the distance - maybe even lost inside, reeling from the input. I've made this face before. My husband points it out to me when I've hit my sensory limit. "That's your sensory face," he emails me matter-of-factly from work, after seeing the photo, "it's how I can tell you're having sensory issues when I'm not near you."

Sometimes I forget that I'm not just an adult with SPD. I was a kid with SPD too . . . just no one had heard of it back in the 80s.

I find myself whispering at the photo, comforting her - me - as she - we - prepares for another pass around the circumference of the ride. "It's going to be okay," I plead softly with the face of my past, "this will ultimately make you stronger. This will be given a name. This will make you an advocate, compassionate, a cheerleader and champion of those in need of support."

"It's going to be okay. This will make you - us - me."

Wednesday, June 19, 2013

Come Pick Me Up, I've Landed

Last week, I begrudgingly sat strapped in on a cross-country flight from San Diego to New York City. I know very few people who love the process of flying - assuming an I-surrender-position as the full-body-scan whirs around their torso, the seat assignments and mis-assignments, the valiant hunt for the right piece of luggage. Flying for SPDummies (trademark pending?) is even more of a process. Picture this: feeling ungrounded and detached most days. Needing to walk with a heavier gait just to give your body the sense of where it is in space. And now picture placing this weird, wonderful body in a winged vessel and sending it sailing into the clouds for hours. Don't forget the endless grinding sound of the engine, the shouts from toddlers a few rows back, the nosy row neighbor who wants many details about where you got your particular neck pillow, and the flight attendant who is just too attentive. Keep in mind the bathroom is the size of a postage stamp, and the toilet roars angrily - and seemingly suddenly - when flushed. And let's not forget the Fasten Seatbelt sign. Oh, and the time change.

I find a plane ride on a good day to be incredibly discombobulating. Last week, our plane out of San Diego was delayed, 15 minutes at a time, for nearly two hours. Pacing short lengths of the airport, flinging my arms and legs against any available wall, I was already impatient and uncomfortable before boarding the aircraft and contending with the tiny straws that typically break an SPDers proverbial back. I was thankful to be haunting a window seat, and was resigned to have patience with myself. We flew Jet Blue, and so next to my ever-loving husband I sat, determined to focus solely on the t.v. screen in my seat back while holding his hand. For hours we were motionless as we were escorted through the air. Instead of checking the time, I gauged the distance by the number of episodes of t.v. that passed. I was thankful for my weighted lap belt with a fuzzy tiger face - a random purchase made months ago from a local home store, but was too uncomfortable to unfurl myself from my seat and use my sensory tools to regulate. Instead, I continued to stare at the screen, striking up bargains with the gods to somehow get me home as quickly and as unscathed as possible.

About an hour outside of New York City, confident that I had made it most of the trip sensorily-safely, and moments after the sun slipped somewhere behind the Earth, I finally turned my eyes to take in a large sip of the endless sky outside my window. The land below was a rich, inky-blackness. As we flew over small cities - perhaps Philadelphia, maybe Baltimore - tiny orange lights, like volcanic pin pricks - turned the ground into a beautiful, pulsing light show. I caught my breath in surprise - I hadn't flown at night in a very long time, and I had forgotten the glow that emerged once the darkness had settled; the towns remarkable from the air solely for their visible lights. A not-so-subtle reminder to this SDPer that sometimes pushing sensory boundaries results in sensory delights.

Tuesday, April 23, 2013

Law and Order, SPD Style

Much to my dismay, I received a crisp white and yellow envelope in the mail a few weeks back. "Jury Summons" it read on the front. I cringed. I know I'm not alone in my cringing, and I'd be hard-pressed to find someone leaping up and down in glee for a day or three in jury duty. Don't get me wrong, there's something to be said about doing your civic duty and possibly taking part in a jury of your peers. Oh, but we SPDers don't like change and we do like structure.

Jury duty is the antithesis of structure.

You are asked to report to a previously unfamiliar place at a possibly unfamiliar time to sit amongst strangers and wait to be called, escorted to another unfamiliar place, and asked questions for which you cannot plan. There are bright, institutional lights; foreign scents; unpredictable sound changes; and lines. There is lots of sitting and waiting. In short, jury duty is scary for SPDers.

Yes, and it gets better. These days, at least in New York City, we have a waiting system wherein prospective jurors must call in or go online daily to see if they've been summoned for the following day. I scrambled to find an SPD-friendly solution. Surely, my snazzy blue-tinted glasses and Wilbarger brush indicate that I might not be the best candidate for a jury. I'm smart as a whip, but I'm a sensory dope. I combed the Internet, looking for any extensive proof that an SPD adult has ever had to cope with jury duty before, to no avail. I get that I'm a trailblazer, and typically that thought motivates me and excites me to be my best sensory-self. Last week, though, I felt like the first SPD adult ever to have to cope with jury duty. Okay, second. An SPD pal of mine let me know that he had survived jury duty by discussing his SPD while being interviewed for a jury. It was nice to know that a frank discussion would help the situation. However, it surprised me that there was no wiggle room with the courts themselves. I guess if SPD doesn't appear in the current DSM or the DSM-V, then how and why would the legal system care about excusing me. My therapist rightfully preached coping instead of avoiding, and so I followed suit.

Ever the good little citizen, I diligently - if not hesitatingly - checked in with the courts the Friday before last. The courts had called numbers 1,000 through 5,999 to be on standby. I was relieved to see that my number was over 2,000 jurors away from Monday's jury pool. I wrung my hands, doing the math. There was no way I would be spared the entire week. Every day at 4 pm, I waited with baited breath for the court website to load. I was cleared on Monday for Tuesday and Tuesday for Wednesday, but Wednesday afternoon, the notice appeared. I would be part of Thursday's jury pool in an unfamiliar part of town (another town, I guess). I cried. I packed my bag as if it was a sensory toolbox - putty, Wilbarger brush, blue glasses, gum, pens and pencils, magazines, a crossword book, water, snacks.

Thursday morning, I decided to take cabs to the courthouse instead of adding navigation of unfamiliar subway stops to my list of difficulties for the day. When I arrived, I found myself in the middle of a very long line outdoors, waiting to pass though a metal detector. I made calls and distracted myself from the seemingly-endless wait. Once inside, I followed a herd into a room that could only be described as airport-meets-hospital. Chairs flanked the walls of the room and sat in rows throughout the middle. I grabbed a seat near the door and against a wall (my favorite place to sit always), and tried taking deep breaths. About an hour of announcements and paperwork followed, lead by a uniformed officer with a sharp sense of humor and soft touch. I watched as he gently spoke to those with "legitimate" excuses and sent them back off into the world away from our jury room. I decided not to even try getting out of serving with my sadly flimsy SPD excuse, and just sat and watched the parade of the pardoned shuffle off.

By the time they called the first panel around 11 am, I was a mess. We had just oriented to the day and the room, and I used my Wilbarger brush way too frequently in the event I'd hear my name called, and be away from a place to brush and calm down. Much to my surprise, the first group was lead not upstairs, but outside, down the block, and across the street to another courthouse. I froze. This was not part of the deal. No one had said this jury pool served multiple buildings. It was scary enough to be in a new space with numerous new spaces upstairs where I might be questioned and selected. I hadn't prepared for a field trip.

Mr. Gentle Uniformed Officer took a break after calling this first panel. He stood just outside the juror waiting room, texting and looking out the window. I considered my options: possible sensory nightmare outdoors with strangers (and on court property . . . contempt of court much?) or have a frank chat with the man whose job it was to call jurors. I got up and pulled him aside. I explained my SPD, expressed how frightening it would be for me to be questioned in another building - let alone this one, and asked if I could participate in panels only in this building. I told him I was happy to be there, as long as I could stay within a more familiar place. His face softened as my eyes watered. I am not used to advocating for myself and my disorder. In the three years since my diagnosis, I hadn't had to face jury duty.

He motioned that I follow him, and together we approached his boss in a Mr. Rogers sweater who lingered behind a desk in the juror waiting room. Mr. Gentle explained my request softly as my eyes continued to tear. His boss repeated my name, and promised he'd help me. I sat back down, relieved but still anticipating a day of questioning and newness. The movie Armageddon blared from two TVs set into the walls. I tried a crossword, failed, tried another. A woman next to me tried to sell me on ordering coffees and teas from her company. Panels were called. Each time, I waited to hear my name, and each time, my name was passed over. I was spared.

At the end of the day, Mr. Gentle announced that we'd all served jury duty and we were all free to leave, covered for another four years.  A cheer rang out across the echoey room. I was last to get my parting papers. Mr. Gentle said he couldn't find my juror ID stub. He said "it's the piece the lawyers return to you when you're done being questioned," and I admitted that I hadn't been questioned all day. His boss stood nearby, and peered at me kindly through thick glasses. He said he knew where my stub was, and handed over my papers.

I can't be sure quite what happened on my day of jury duty. Did I somehow manage to avoid being called for at least a dozen panels? Did the honest explanation of my situation sway two unusually caring court employees? I will never know. I stand by what my SPD friend advised from the start: go to jury duty, but find your champion. Someone somewhere is always bound to understand. A good lesson on living with SPD, indeed.

Friday, April 5, 2013

Patience, Progress, and the Past

Hi Blogosphere,

Three Ps for you today.

The first two are part of the same story. I am beyond pleased to report that for the first time in my life, I bowed out of a potential evening engagement and pointed to my SPD (patience AND progress!) For years, I've been weirdly elusive when it comes to making plans. This was especially true before I learned about SPD and was unsure what was going on within me. My husband and I were invited to a childhood friend's rehearsal dinner the night before his wedding. I want to go - I always want to go, the event is never the issue. The issue is my response to the event once I'm there, the jumble and tangle of sounds and sights that leave me worn out and numb. Instead of sighting a conflict, I spoke honestly. I said that it was too difficult for me to be at two evening events in a row (it's true, one night after the other proves a continual degrading of my senses), and I'd rather be fresher for the main event, the wedding. The response was filled with patience and caring. The author said she was so glad I knew how to take care of my needs - something that has taken me since my diagnosis in late August of 2010 to learn. No harm, no foul, but especially no lingering feelings of shame and guilt. Rachel - 1, SPD - 0!

As for that last P, I have a very interesting tidbit of SPD history to share (the Past). I am currently working with a Jewish organization as a grant writer, and I am constantly exposed to new views and ideas thanks to the dozens of Rabbis (Jewish clergy) on staff. On day 1 of my new job, I was called into the CEO's office for a meet-and-greet. He presented as a wise, patient man with a kind sense of humor, and so somewhere in our discussion, I thought it might be nice to mention my SPD. (Namely because without my blue tinted aviator glasses, I feel under constant attack from office fixture fluorescent lighting, but they look out of place in a corporate office.) The CEO, also a Rabbi, nodded as I spoke, and then swiftly turned towards his back and reached for a sheet of paper. In Hebrew (which I don't speak), he began reading text written by Maimonides, a 12th century medieval Jewish philosopher on a text called the Mishnah, a study book of Jewish law.

Are you still with me? Good. It's worth it, I promise.

So the CEO told me that within this supremely old document, as well as within the commentary of this beloved scholar, there is mention of SPD.


Maimonides wrote:

"Evil spirits, we call all types of melancholy. There are those among them in which the inflicted senses flees from him when he sees light or when he is among people, but he finds ease in darkness and solitude and in empty places."

If this doesn't describe SPD, I don't know what does. Of course, back in ye olden days of yore, trouble with the senses was attributed to evil spirits (and I'm sure attempted to be cured with salt), but the point is SOMEONE noticed people had trouble with their senses and WROTE IT DOWN. Even the bit about melancholy - imagine being misunderstood and differently-needed in ancient times - reminds me of the comorbid depression often found with untreated SPD. (Too bad no one picked up on the comorbid anxiety!)

I left the CEO's office with a strange sense of renewal and hope. I am just one SPDer in a line of many, many previous generations of sensory challenged folk. Perhaps it is this that gave me the courage to speak up and permit myself to miss my friend's rehearsal dinner. How could a condition that reaches its thin fingers far back into the past be anything but real?

Tuesday, March 5, 2013

Support from the SPD Foundation!

I am so excited to announce that the Sensory Processing Disorder Foundation, founded by THE Dr. Lucy Jane Miller to advocate for, research, and educate people on SPD has just shared my last blog post on SPD and Adam Lanza on their website.

Here are the links:


As an adult with SPD diagnosed so late, it is truly my mission to give a voice to this cause. I was voiceless for so many years, lost without the language to explain what I was feeling and experiencing. I want to help give SPD children the voice they themselves have yet to develop, and I want to encourage other SPD adults to speak up too. Arm-in-arm with this generation of SPD parents, I truly believe we are the best advocates for our cause as it struggles to find footing.

I hope you join me!

Tuesday, February 26, 2013

An Open Letter to Adam Lanza, The Media, and Society from an Adult with Sensory Processing Disorder

There are three things I know for sure about Adam Lanza thanks to the news media, as I sit and watch from my cushy perch miles away from Newtown: he had brown hair, he lived with his mother, and he inexplicably gunned down defenseless children. Oh yes, and he had Sensory Processing Disorder (SPD) – a controversial, neurological puzzle of a diagnosis direly lacking in research and medical support. I too have brown hair. I too have SPD. But there is one major difference between me and the skeletal figure whose face haunts the news: I would never hurt a fly.  

I was diagnosed with SPD in 2010 at the age of 27 after my new, forward-thinking therapist noticed I had some unique sensitivities. Rediagnosed, I should say, as I had been diagnosed with Panic Disorder, an anxiety disorder, back when I was 14. My old diagnosis never fit quite right. Yes, I felt anxious frequently, but under very specific circumstances – when the lights were too bright, when a noise was too loud or too high-pitched, when I could not tune out the myriad of voices conversing around me. I also hugged everyone in sight, and ravenously craved deep pressure in my torso and legs, and softness on my fingertips. I slept under piles of blankets – and never very well, I might add. I was scared and cautious about being in new environments. An old therapist once told me I worried about the wrong things – not for whether a neighborhood was safe and free of violence, but whether I would feel well in my body. Teachers described me as sensitive, and I cried (and still cry) at the drop of a hat. I was (and still am) quick to agitate, particularly in environments where the sensory input – the lights, the noise, the movement – feels big, bold, and out of my control. It is, as Beth Arky says in her piece What Is Sensory Processing Disorder? How To Diagnose Children With Sensory Issues in the Huffington Post, a “neurological panic.” A phrase I cherish. But I have always been very outgoing and bubbly – a friendly, passionate go-getter with a quirky sense of humor and a love of people and writing. SPD did not make me a murderer, it made me a little bit different, it made me strong; it made me a fighter.

I am a child of the 80s, born during a time when SPD wasn’t a familiar acronym, and so I managed to go untreated for a very long time. Once it was determined that I had SPD, my world finally came into view. I understood that my anxiety is a side effect of SPD and not the root of my problems (attempt to cope with the pain of poorly-processed sensory information for years, and I promise you will feel anxious too). I finally had a title, and a neurological reason, that explained in gentle, loving detail who I was, and why I have struggled. The SPD community is filled with adults who, like me, are coming to their senses and finally getting occupational therapeutic help. There are nurturing parents who want to help modify their young children’s’ lives to fit their needs, and parents learning how to assist their adult children in succeeding. There are adolescents learning how to transition into adulthood with a burdensome package of sensory requirements. Sure, our sensory qualms vary widely – there are seven senses (surprise! And a hotly debated eighth) and we can easily be over-responsive, under-responsive, and seeking sensory input all at once. We do battle with our senses on a daily basis, in the face of a society that has yet to understand our cause, and this struggle unites us in such positive ways.

Struggle, sure. Frustrating, yes. Disheartening, sometimes. But SPD is not a trigger. It is not the pulse of the horrific actions that occurred in Newtown, much the same way the Lanza’s brown hair was not the reason for the senseless slayings. We need to keep this in mind before we point fingers in a Salem-style witch hunt – before we look sideways at a young child who crashes into things more frequently than others; before we sever ties with an old friend who couldn’t keep up with our highly-social lifestyle; before we blame our children, neighbors, and closest confidants for being differently wired. Adam Lanza stole beautiful lives from aching hands. I will never dispute the horror and the tragedy of Newtown, and my heart is filled with love for the families of the lost. Adam Lanza also stole away a diagnosis in its infancy, yearning to be understood by society and the media. He put such an ugly spin on something I thrive with on a daily basis, in spite of the challenge. Those of us with SPD are the silent victims; forever entwined with the gaunt, hollow eyes and thin-lipped mouth of a killer.