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Wednesday, December 22, 2010

Allow Me To Clarify

It's come to my attention, quite lately, that many of those around me have no idea what SPD means and how it makes me feel. This is totally fine, again given my newish diagnosis, but coming up against these roadblocks continues to make me feel that age-old sense of isolation, dating back to my teenage misdiagnosis of Panic Disorder. Anyone who's met me for more than 10 minutes has gotten my basic SPD spiel, and those who have known me for a few months or more really get a hands-on sense of what it's like to be someone trapped under the weight of this condition - untreated, mind you - for 27 years. But apparently seeing me in the raw, wrestling with the anxiety that comes from my difficulty processing, isn't enough to get any of these facts to stick. I know people mean well, but I suppose being in the field of mental health makes me more in-tune with the needs, behaviors, attitudes, and emotions of others. When this isn't reciprocated, especially in the more critical relationships in my life, I can't help but feel frustrated.

For those of you who want a cheat-sheet, allow me to clarify:

1. I am not afraid of the dark.

This is something that people around me have mistakenly believed for as long as I can remember, attributing my increase in anxiety to the lack of daylight. The darkness is a problem because it cuts my visual processing abilities and forces me to rely on my jumbled auditory sense, which makes the world sound like a mishmosh of sounds in the daylight, let alone after dark. I have also noticed - again, since the dawn of 1983 - that I feel worse as the evening draws on, most likely due to the fact that I've spent the entire waking day fending off and failing to properly process menacing sensory input. So while darkness might hit around 4:30 pm in the winter, it is nowhere equivalent sensory-wise to say 11 pm. Do you see me shying away from those later evening activities? You can bet it's because my brain is completely fried, and I feel frayed and susceptible to a melt-down. I will place bets I'm not the only adult SPDer who can state this claim.

2. I am not avoiding you.

I haven't called? I haven't emailed? You can't seem to pin me down for an activity? It's really not about you, trust me. When external activities generate anxiety, you can bet that I can't reach any state of sensory-normalcy. Picture feeling like bugs are crawling up your arms and you want to shed your skin pretty much on a daily basis, now add life stressors (or, um, graduate school work) to the heap. Do I seem a bit jumpy? Have I not been able to call you? Wanna take a guess why?

3. I need your flexibility.

Maybe I've made what seems like a "weird" request about the time or place of an event. It's most likely because the event is at a time that is unpalatable (see #1) or the location is terrifying (something that a classmate with SPD and I talk about frequently, fear of the unknown takes a new, special twist with SPDers, because we're terrified of what sensorily awaits in an unknown location - everything from where the lights are located and how bright, how echoey the room is, how busy it'll be, what the chairs feel like. It's life's true picnic). Are you a well-wired human being? Would changing time or location make you feel ill in any physical way? If so, let's compromise. If not, please, I need your flexibility - it's not a luxury I'm afforded with this condition.

4.  I need your understanding and support.

This is the bottom line, this is the fuel that keeps me ricocheting between the endless sirens and hustle and parade of people. Without the understanding and support of those who love me, I am without a lifeboat, and it's a very cold ocean. If I can't find my voice in an SPD-related situation, please help me stand up for my "quirky" needs, regardless of where that puts you in relation to others. There are very few people who must stand firm with me, but if you believe this applies to you, it comes with the territory. I promise I'm worth the work.

You want to love someone with SPD? Ask questions. Learn how difficult daily living can be. Close your eyes and imagine a world where noise and light and touch and balance are menacing, terrifying, draining forces to be reckoned with every single day. Then add the layers of your life atop of this precarious heap.

My name is Rachel, and I'm an adult living with Sensory Processing Disorder. Welcome to my world.

Monday, December 20, 2010

Cheap Date and Mystery Symptoms

It might just be me, it might be the SPD talking, but even one glass of wine goes "straight to my head." A few weeks ago, I decided it would be a good idea to have wine with dinner, just one glass, just because I was using it for the sauce of my chicken picatta. I poured a glass for me and one for Josh, and we had dinner. By the end of the meal, about 1/4 of the glass remained, so I tossed it back quickly in an effort to be done and clean up. Colossal mistake. Josh said it reminded him of when non-SPDers get drunk, but the time lapse was way shorter. About 5 minutes after my innocent drink of wine, I was pretty much flat-out drunk. Seemingly funny, but also a bit disconcerting. I'd love to know whether or not this has something to do with my grand ole sensory stuff.

Also coming up is a trip to the neurologist. For years now, I've had these mini seconds-long "episodes," for lack of a better term, where I feel buzzing on the left side of my head, causing my head to pitch forward, speech to stop, and my equilibrium to be completely lost. If you didn't know I was having one of these "episodes," I'm sure you'd hardly notice, but they leave me feeling pretty beat and a bit shaken-up. In the past two weeks, they've occurred four times. My OT said she's never heard of such things, and my SPD pal D. said they were also unfamiliar to him. I wonder if they're somehow related to the weird wiring of my sensory system . . . will keep you all posted.

I know it's been a while since my last post - D. even checked in on me lately, just to ensure I was still alive/all about our cause, and of course I am, but my first semester of graduate work is coming to a close (finals this week!) and Josh and I have begun wedding planning . . . so it's a bit hectic, to say the very least.

Over winter break, I hope to re-begin my listening program - this time, sans vibrations - that went so well last time - and I need to get a pilates ball for my moro exercises - which I believed I described in an earlier post, but am blanking now as I write :-)

Anxious times are tough for us SPDers . . . all sounds become painful, all movement becomes distracting, it all leads to frustration. I'm doing my best to stay calm in the midst of the (happy) chaos, and continue to remind myself how lucky I am to finally have a diagnosis. This year has meant many things: the start of a new career and education to match, the dedication of a life-long relationship, and most thankfully, after 27 years, being told that yes, I am in fact somewhere in the realm of normal. I'm a woman with SPD. Lucky me :-)

Wednesday, November 10, 2010

Rachel Getting Married

No, not the movie about the woman leaving rehab and her sister's wedding . . . I'm officially getting married! My wonderful boyfriend of a year proposed via an eReader and a written story about our lives together this past Friday, and I sobbed as I saw him down on one knee.  Yes, waiting for the surprise was agony (see last post, I don't deal with surprise too well), but we couldn't be happier. To be honest, I, personally, couldn't be happier - especially in light of my recent SPD-diagnosis. Josh has been supportive above-and-beyond the call of duty for the majority of men out there. He cheered with me when I was diagnosed, and cried with me as I stopped to consider how to let SPD become a positive part of my already-established life. He had angry words for my school's administration. He continues to brush my back at regular intervals, reminds me to shower the second I walk into my apartment (I find it centering and calming, a way to withdraw from the overstimulation of the day), and is willing to work with me to make our wedding "Rachel-friendly." I have hit the SPD-partner-jackpot (and the everything-else-partner-jackpot too) :-)

Now the question remains: how to throw a 150-person wedding without sending me into a tailspin of symptoms? Yes. Something I look forward to debating more with my OT and her intern, and something I hope you SPDers out there (here and on D's boards) will be able to help settle. I've already suggested that we go visually-minimalistic. The space needs to be contained enough for my funky proprioceptive sense to handle (don't want to "fall off the room" on my wedding day!) and well-sized enough so that the DJ music isn't too overwhelming (what's up, auditory reflexes), and the throng of guests isn't too taxing (oh, vision).

We've already started discussing details, like flowers (we're hoping off-white roses and blue hydrangeas - familiar and friendly - and especially simple), venue (TBD, but the simple criteria remains), and clothing (comfortable wedding dress! Nothing too strapped-in, nothing that makes me anxious to have on, no extraneous lace or bows or buttons). It's going to be a huge challenge, but with such an amazing, supportive man by my side, I know it will be a day remembered not in SPD-related-agitation and anxiety, but in joy.

Friday, November 5, 2010

Surprises

I flat-out hate surprises. Unexpected noises make me shake out of my skin, a gentle touch from behind when I'm unaware propels me up into the air, and questionable situations - unplanned, unexplained, out of my control - can be terrifying, regardless of their inherently positive or negative swing. Imagine living your life like it's 9/11 every single day of the week, waiting for a jolt, but not quite sure when it will occur. Picture bugs crawling under your skin. Visualize an impending sense of doom, even during the most beautiful and significant moments. That's how it feels to live in this body.

Today's occupational therapeutic conclusions were very apropos to the current thought-trends permeating my life. My OT, fresh from a weekend clinic, asked me to lay down on the mats in the colorful equipment room, and told me she - with support from her awesome intern - were going to check my Moro Reflex. This is one of the primitive reflexes, the startle reflex, present within us prior to birth and through infanthood, usually discontinued or severely lessened. It is observed as a pattern: startle, extension (arms reaching out), flexion (arms reaching in), and crying. With my back against the mat and my legs bent at the knees, my OT grasped my legs lightly and quickly jolted them. While it was surprising, I don't think I did anything much out of the ordinary. I heard her walk around to the top of the mat, a bit uneasy about what she was going to do and when, specifically. She paused, and then slapped the mat on either side of my ears. It felt like I jumped out of my skin (in reality, I jolted my arms - not unlike the Moro Reflex) and then as I was laughing from surprise, I began to cry. Or perhaps I cried and then laughed, all I remember was being shaken to my core.

Big surprise (hah), I have a relatively active reflex for someone my age. (Read: most of you would probably hunch your shoulders to your ears or blink.) Another step in explaining why I am the way I am, I suppose. My OT gave me a few exercises to help me tone down the intensity of this reflex - one of them is called Boing, which makes it that much more fun, and involves me falling back into a pile of pillows landing in extension (arms out) and then pulling myself back up to a sitting position with my arms in flexion (arms in) - essentially inducing this primal reflex repeatedly without the absence of control. The second exercise involves laying on my back, pressing my feet against the wall (almost like I'm ready to push off the side of a swimming pool on my back), and bouncing a large ball off the wall. There's also a two-partner grab-and-wrestle game with the ball that I might teach Josh in all of our spare time. It's very "This is MY ball, MINE!"

I'm essentially taking control of the remainder of this startle reflex, which is amusing really, as it's a reflex to having no control over loud, sudden events. Explains so many things - the need for structure, my dislike of loud, unanticipated anything. Good times, as always, in this sensory world I call home.

Wednesday, October 27, 2010

Auditory Updates

Sorry for the lack of posts recently (all two of you reading my blog, hah) - it's midterm week, and I've been MIA studying like mad. The good news is midterm #1 is done, midterm #2 is tomorrow, and then a weekend trip to visit the (hopefully) future in-laws is in store, so hooray!

Last we "spoke," I was feeling pretty cruddy from that listening program. My awesome OT told me that my symptoms were atypical, and to stop using the device while we figured out what else to do with sensitive little me. She sent me to an audiologist, just to confirm that my hearing instrument was normal, and we weren't missing something truly physiological.

L. met me with her two interns (hi guys!) and treated me to a battery of hearing tests in what can best be described as a completely-sound-proof-booth. My ears were plugged up, and a series of beeps and boops followed - some high-pitched, some low-pitched, some barely audible. L. also read a series of words that I had to strain to hear and repeat. Afterwards, I was attached to what felt like a clamp on the back of my head (really some instrument to convey beeps and boops via bone conduction). When completed, I left the booth, and they hooked me up to another instrument in the office, plugged up my ears, and sent more beeps and boops my way. We were about a round and a half into this test when - completely out of nowhere - I began to cry.

This wasn't an emotional cry - one where I was entertaining any hurtful or wistful thoughts. In fact, I wasn't thinking about anything at time time, aside from how interesting it was that the office wall was painted like a landscape, yet I couldn't stop the tears. I felt them well up, the intensity grow, and the inability to stop, especially as the beeps and boops got louder. L. asked her interns to stop the test, and asked if I was ok - I truly was, I wasn't hurting in any way, but it almost felt as if somehow through the particular tones and loudness of sounds, I was being forced to cry. I stopped the moment the test was completed, feeling completely fine. L. commented that I was "super-sensory." I thought back to the listening device, and how I felt a greater propensity towards tears, as well as the myriad of activities in my life - loud, bright, busy - that made me fight back tears, assuming I was just feeling beaten by this then-nameless disorder.

The long and the short of it is no one knows why I'm so sensitive. L. and my OT called this an "auditory reflex," a perfect description for a reaction I didn't see coming and didn't feel emotionally-attached to at all. It felt the same as when a doctor strikes your knee with a little metal hammer, causing your leg to jump - except it was sound instead of a hammer, and jumping meant tears.

I'm going back to the listening device next week, starting with the bone conduction bit turned off. It's true, I listen to my iPod just fine, so the intensity of the bone conduction is the only outlying variable.

Ah, SPD. You always keep me on my toes, you wily disorder. Took me 27 years to learn your name, and just when I think I've got you pinned down and defined, you manage to slip out from under me, leaving specialists shaking their heads in your wake.

Monday, October 18, 2010

Case of the Yucks

I’m not feeling so hot these days. Right after my brushing intensive, I was feeling pretty weightless and anxiety-free, but I guess between my over-the-top schedule these days, and my trials and tribulations with the listening program, it’s no surprise I’m feeling pretty yucky. This is always the worst part of any treatment program – the middle, those meaty hours that will eventually provide the firm foundation for intense improvement. Very rarely does treatment solve an issue right off the bat. From a mental health perspective, the thickness of post-diagnosis therapy is when the true issues burst through the surface, and demons have to be put in their place and understood. From the world of an SPD adult, this time, which is filled with mature hope, boldness, strength, and focus, totally sucks.  I feel like I’ve taken steps back to where I was a month and a half ago. I find myself fighting back tears even more often than in the past. I wear my tinted glasses even in the office, because I can’t tolerate my desk or screen without them. My body surges long after I’ve taken myself to bed, and I feel like I’m fighting myself to keep up with even my most basic schedule (yes, it’s a huge basic schedule, but it’s still only my must-do-activities).

I know my reactions are a result of this break-down-and-build-up we’re in the process of in OT, but it’s SO hard to stay patient and choke back the feelings of nausea and discord – especially since I got to experience life without them for a month.

Friday, October 15, 2010

. . . One Step Back

Some of you might recall my post a few weeks back, when I triumphantly approached the Assistant Dean with my new, comfortable description of SPD as a "disability," and the hours and tears it took to reach acceptance of this potent term. I spoke to my OT and therapist, requested paperwork, and filed it with the university - in all of my "free" time (which these days seemingly consists of an hour before bed every night, assuming I'm not rushing to have dinner, unpacking or repacking for my next hour+ trip to the Bronx, etc. This endless schedule of two jobs and four classes plus commuting will be the end of me, really.)

So he and I set up a meeting, and I scrambled back up to the boogie-down borough early one day this week to discuss the university's findings on my paperwork. I'll sum up our meeting by saying it was a disaster of epic proportions. The university doesn't consider me as someone who needs support (not disabled? So where are we now, then?), and apparently he didn't think much of me either, saying they didn't believe there really was anything wrong with me, and therefore, they were unwilling to support even my smallest requests of just letting professors know of my diagnosis. As a normal, human being with emotions, I started to tear up - a habit of mine (I rarely hide my feelings) - and I asked him, while swallowing these forming tears, why we even bothered filing this paperwork if I didn't fall under their own personal category of "disabled." My questioning lead to a barrage of negativity from him, questioning my career path choice, and flaunting his power over my eventual graduation from their program. He described my reaction as "inappropriate," which is humorous in retrospect, as yelling at me for 10 minutes for my reaction was beyond inappropriate. Essentially, I apologized for displaying an emotion in public until I was able to calm him down enough and back out of his room. Later, I spoke to a second-year student with a disability, who said his behavior was par-for-the-course, and not the least bit surprising. Unfortunate, really, that in life we find those who are least suited to helping others are often placed in positions of some power.

Yesterday, to cap off this week, I received a paper back from that initial class where I was considered "disabled." I nervously looked down at my well-thought-out document, at my first grade from my graduate program. It was an A+. Josh, ever the humorist, said, "what, you couldn't do any better? You couldn't get a prize AND this grade? What, no car?" :-)

In other news, I've cut back on my listening device for now, as the hour stints were making me seriously nauseated and way more labile than usual. Half-hour sessions are still affecting me, but not in such an adverse manner. I find my middle ear feels sensitive on both sides, and I can't tolerate listening to an iPod even an hour after the listening program. I've been reminded a few times that it's always a step back before moving forward. Doesn't that just sum it all up.

Monday, October 11, 2010

Aviators, Trampoline, and an iPod on Steroids

First of all, HAPPY SENSORY AWARENESS MONTH! October is a month set aside for many causes, but one of them is mine, and therefore I’m doing my part to make others aware. I hope in an effort to promote awareness, you send this blog out to a few people you know who might benefit from learning about SPD and an adult’s experience. You can also send them to www.spdinternational.org, D.’s site for adults with SPD, and those who love them.

It’s been a while since my last post, but two jobs, grad school, and this new diagnosis really have left little time for anything else. It feels like everything all at once, really – subway rides uptown and downtown and hour-long daily bus rides to the Bronx and back at super-late hours, tons of work and homework, patients, and many, many, many bosses. It would be a lot for anyone to handle, and being smack-dab in the middle of my SPD treatments just makes it that much more difficult.

Thankfully since last week, three new tools have entered my life to help ease my issues: blue-tinted glasses, a listening device, and a trampoline.

The blue-tinted glasses were suggested by my awesome OT, who said she remembered reading once the positive impact of colored lenses on my sorts of sensitivities. I tried them out in class last week (the one where I was called “disabled”), and with my fur-collared army jacket and striped shirt, felt like I had dropped in from LAPD in 1972. My grad school classmates were fantastically supportive; one of them even suggested we all wear sunglasses one day together to make a point to the prof. I was skeptical at first, as I really have been with every tool handed to me, but then I realized I was completely focused. I wasn’t spending my usual amount of time squinting, heart pounding, leaning against the wall for support. Instead I was completely engaged in class, asking and answering questions . . . not unlike the bad-ass 1970s cop I was apparently dressed up to be. After class, I felt relaxed and chatty, not like I had to bolt, and I didn’t have that same sense of pulsing under my skin. Score one for vision. As I’m typing this from a fluorescent office, I’m wearing them, only slightly awkwardly.

My iLS device arrived last week, and my OT and her lovely intern set me up with the odd-looking piece of machinery. I’ve been asked to listen to it for one hour a day for 60 days. In an ideal world, 15 minutes of each day will be dedicated to listening as well as performing activities specified by the iLS company (from visual tracking with a yellow tennis ball to balancing exercises), and as I understand it, this is to help with some of the extraneous issues, allowing for both hemispheres of my brain to coordinate properly.

The entire concept behind the listening device is confusing to me still, even after many discussions, research, and a previous blog post. I am only on day 4 today, and can already report “symptoms” of slight nausea during the listening, extra visual sensitivity after the listening, and a slight ringing/buzzing in my ear when the device isn’t on. I’m waiting to confirm these feelings with my OT, although I know most feedback on all of these tools is given by children, so who even knows what’s what. I’m working under the assumption that my senses in general need to be shaken-up, exacerbated, and broken-down before they can be pieced back together.

The third, and most fun, new tool is a trampoline. OK, it’s not one of the pieces of equipment suggested through therapy or research, but I’ve been asked to do lots of jumping – especially with the brushing – and I’m noticing how helpful jumping can be when I’m feeling extra sensory sensitive. I believe D. said he had one in his sensory-supportive bedroom, and as Josh said, all we now need is a ballpit and we’re set :-)

So that’s where I am right now, essentially attempting to hang on to the busy myriad of amazing and stressful things I’ve got going on in my life, while educating those around me about the joys of sensory issues, and handling these sensory issues . . . It’s a lot. On the questionnaire that accompanied the listening device, one of the emotional symptoms related to this all was the difficulty of and overwhelming feeling related to performing ‘normal’ life tasks. This is a biggie for me, and always has been. It’s tough to explain to those who love you: yes, a result of this means I’m even more sensitive when it comes to juggling many life activities, and therefore even the smallest potentially pleasurable things outside of it – a new lunch destination, an extra stop on the way home, a change in schedule – make my difficulties even more difficult. Yet another perk, I suppose, and yet another minefield to negotiate. Even with the diagnosis, I feel I have to keep speaking up for myself in these moments. I’m truly not willing to overload myself and risk collapsing my job, my fellowship, my courses, my best relationship.

I’m still hopeful, though. I’m welcoming the nausea and absurd eyewear, waving in the extra sensitivity and calmly explaining my way through the world to others. I look forward to that day months from now – a year from now – as soon as I can get there, really, when I open this blog, skim my words, and strain to remember these strenuous, freeing, frightening transitional days.  

Wednesday, September 29, 2010

Handle Me with Care

Been beat up and battered around/Been set up and I've been shut down/You're the best/thing that I ever found/Handle me with care/I've been uptight and made a mess/But I'm cleaning it up myself I guess/Oh the sweet smell of success/Handle me with care.
-Traveling Wilburys

Last night, while discussing methods of travel for a theoretical upcoming trip, I heard a loved one say into their phone, “Rachel can’t handle it.”

If there’s a single phrase that sums up the guilt, sadness, frustration, and anger of the past 14 years, it’s “Rachel can’t handle it.” It’s been explanation by those in The Know for those in The Sort-of Know about why I’m unable to attend an event or perform some universally-accepted mundane act. It’s been mouthed by family, friends, and significant others, and I’ve even found myself resorting to these four demeaning words when I’m scraping the bottom of my bucket, out of reasons for why I can’t act the way I should.

The guilt and agitation connected with the sentence comes from the many years of what happened after the phrase was uttered. It often meant I would be left alone, in tears, chastising myself for my apparent short-comings, while those I loved would go and do and be in ways I couldn’t fathom. In some ways, it spoke the truth: I couldn’t handle certain zoos of lights, sounds, sensations, and crowds; a cacophonous failure composed of sensory overload. The self-flagellation that followed was – and still is – relentless and unforgiving. “What the hell is wrong with you?” I screamed to myself as I tried to keep busy and the crying at bay. “You should be able to do this; you’re such a huge burden on yourself and others.”

I’m a future therapist. I know this attitude is self-defeating and problematic, but it’s hard to be forgiving when you feel trapped within the confines of ability. In many ways, I’ve always handled more than everyone else around me. You’re going to that party? Well so am I, even though it feels like someone is throwing rocks in my head, and the lighting makes me want to jump out of my skin. You’re walking to work? Well so am I, even though my heart is pounding, and I can’t understand anything you’re saying above the din of the city. You’re going to a movie? Well so am I, even though the change from darkness to light is completely disorienting and makes me feel sick. Sure, I’ve had to back out of things (remember, Rachel can’t handle it), but I’ve spent my life perpetually pushing myself to participate until I’ve reached my limit and broken down. It’s much like spending every day carrying around 50 lb weights – doable in a sense, but difficult and painful . . . and at least you can put weights down and give your arms a rest. My sensory weights are not something I can just place on a table, and shake off the soreness. Some day it might be possible, I hope, but it’s only been five weeks since someone untangled my issues. So why, after diagnosis, after the beginning stages of treatment, after writing this blog and educating friends – after donning my awareness gear and trumpeting my triumphs and tribulations to the world, does this phrase still catch me off guard?

I suppose after all these years, they’re not just words. The words are imbued with perceived ‘failures’ of days past. They ring with the sound of jacket zippers, door slams, and non-verbalized group disappointment. They echo with the curve of my back and forehead to my knees, each unheard cry resonating upwards. They’re haunting.

Monday, September 27, 2010

Derailed

I know I’ve been a bit MIA lately. To be honest, I was starting to feel almost too comfortable in this new diagnosis of mine. Yes, I thought, finally we’re here – we’re dealing with the issues at the root and no longer pruning the leaves. People starting warming up to the idea, and I’ve received support from friends, family, bosses. I went out and ordered an awareness bracelet, homemade by a lovely lady on Etsy.com, featuring “reflex blue” (purpley-blue) beads in celebration of my sensory sensitivities. I’ve put together draft fliers on adult SPD in preparation for Sensory Awareness Month in October (mark your calendars!) It was a month of great discovery, unfortunately followed by derailment.

Off-handedly and loudly, when requesting support in shutting off one of three supremely bright florescent lights in a classroom, a professor of mine shouted something akin to, “DISABILITY? You have a Disability! You need to register this DISABILITY with the university before I can help you with your Disability.” The entire class was watching.

Disability. Hmph? I’ve heard “disorder,” “neurological condition,” but never “disability.” And it wasn’t just “disability,” it was “Disability,” vivid and clear, with a capital D. Disability. Like the special parking spots, and gently-geared Olympic games. Disability. Like a protective helmet, like missing a leg, like my lack of ability, like being disabled.

I spun around, speechless, cheeks bright red, to face my classmates as I skirted my way across the room back to the safety of my seat, barely fighting back my first set of tears in an entire month. As I reached my chair, she bellowed “you can turn off that light now,” and I complied. When I sat back down, I turned around to face a classmate, who had admitted that she, too, was diagnosed with SPD back when she was 14, and asked her, in whispered shock and in tears, “Does this mean I’m disabled? How do you define disability?” She tilted her head in consideration. “Well,” she started, thoughtfully, “it’s a bit disabling, don’t you think?” I spent the rest of the day’s classes as invisible as possible.

The next 48 hours were comprised of a series of teary meltdowns. Having spent a month marveling that I didn’t have to cry, I spent two days stuck in sad-mode. I asked just about everyone I knew – “am I disabled? Would you consider this a disability?” D., my favorite SPD guru, wrote, “think abilities, not disabilities . . . you are not some freak, some weirdo, or creep. You are just a girl who was born with a bad sensory processing system. That's it. Just some faulty part that makes things go wrong a lot. Other than that, you are totally normal, a very high functioning person. Believe me, I know what it's like to suddenly figure out that you're 'special needs' and 'disabled'.  But who declared them disabilities or special needs anyway? The only reason they're called that is because the majority of the population doesn't need them.” My psychotherapist advised me to register with the university. A professor herself, she said it wouldn’t hurt to let my professors know I needed a bit of special treatment. (After all, who really *doesn’t* love special treatment?)
The Americans with Disabilities Act (ADA) has a three-part definition of disability. Under ADA, an individual with a disability is a person who: (1) has a physical or mental impairment that substantially limits one or more major life activities; OR (2) has a record of such an impairment; OR (3) is regarded as having such an impairment. A physical impairment is defined by ADA as "any physiological disorder or condition, cosmetic disfigurement, or anatomical loss affecting one or more of the following body systems: neurological, musculoskeletal, special sense organs, respiratory (including speech organs), cardiovascular, reproductive, digestive, genitourinary, hemic and lymphatic, skin, and endocrine."
SPD is neurological, and if let run rampant, it does affect major life activities. So there it was, prepared for me and my brethren by the government. Disability.

Since the week before last, when this incidence occurred, I’ve shifted my perspective. Why not feel better in class if possible? Why not reap the benefits of this poltergeist? I’ve asked both my OT and psychotherapist to write letters to the Dean, and I’ve completed a questionnaire from the Dean’s office on what my needs are, and how to meet them (lower lights, understanding, quiet spaces for testing), and I hope to submit the paperwork by the end of this week.

I suppose what actually confirmed this was all going to be OK was meeting with the Dean in person. As I walked into his office, I introduced myself, and he recognized my name from an earlier email. His office was a visual menagerie of plants, clippings, photos, objects – all brightly lit by florescent lights, and within the first ten seconds, I must’ve squinted, as I tend to do, or looked uncomfortable. Without prompting, he jumped up to switch off the overhead lights, allowing his bustling office to be lit purely by the sunlight pouring in through his windows. This isn’t so bad, I thought, as he reassured me the university would take all measures to make me feel more comfortable. I’ve spent 27 years unable to say why I needed support, but now, without question, it’s being laid at my feet.

Wednesday, September 15, 2010

OT, Session 2

It's been four weeks since I was officially diagnosed, and today marked my second occupational therapy session, which, much like the first, was a symphony of new terminology, concepts, and tools. Before even really settling in, my OT placed a pair of massive headphones on my ears, and turned on what can only be described as an iPod on steroids. 

It was a listening program, based on the techniques of Dr. Alfred Tomatis, an otolaryngologist (a physician of the head, nose, and throat) whose work with opera singers lead to the development of the "Electronic Ear." This device used earphones and sound filters to enhance and sensitize the singers to the frequencies they were missing, and forms the basis for the listening programs used today. As far as I understand, the programs help with sensory gaiting, or the automatic process by which the brain adjusts its response to stimuli. When one stimulus is presented, there is a response. But when it is followed by a second stimulus soon after, the response to the second stimulus is blunted. This is an adaptive mechanism to prevent overstimulation, and it helps the brain focus on a stimulus among a host of other distractors - something that I have trouble doing. 

The sound coming through the headphones was peaceful, like chanting monks and classical music, but it sounded different, almost as if tiny monks were actually sitting in my ears singing to me. The music is conveyed through bone conduction, as are most lower-frequency sounds that we hear (and the sounds we hear of our own voices). According to the listening program's website, by boosting both high and low frequencies as well as volume in this manner, the muscles in the middle ear tighten and relax, which strengthen them over time, and lend to more focused hearing. Just before we shut off my first session with the program, I noticed my ears were twitching, especially on my right side - a strange sensation I cannot say I've ever experienced. When I reported this to my OT, she was startled that I was so sensitive, and marveled that I noticed my right ear twitching more than my left (it seems more of this type of sound is filtered through the right side). We are in the process of working out the details, but if all goes as planned, I will be required to listen to an hour of this music per day for 80 days. Seemingly a worthwhile undertaking.

We also discussed my propensity to smash myself into the corners of just about everything, and my lack of ability to remember when and how I got bruised. Apparently this deals with proprioception, the sense of the position, location, orientation, and movement of the body - and its parts - in space. According to my OT, it seems my brain is not getting enough feedback from my body (hence the positive effects of pushing and jumping during the brushing technique), and the receptors between my joints are not completely conveying where everything's connected. Thankfully, the best medicine for this symptom is the gym, something I've taken up since my yoga injury in March, and have become even more dedicated to lately since my diagnosis. She called for extra heavy pressure on my lower body (anyone want to lend me a trampoline?) and balance practice via an old yoga favorite, the tree pose. 

I have also been instructed to download some Mozart (also based on Dr. Tomatis' work, suggesting that listening to Mozart's music may induce a short-term improvement on the performance of certain kinds of mental tasks), and listen to a CD of nature sounds that helps the brain learn to process where sounds are derived, spatially. 

I've learned so much in four weeks, and am already feeling more focused and less anxious, so I can only imagine what the next month holds in store. 

Friday, September 10, 2010

Shedding Stigma: A Refuted Renaissance

In therapy the other day, I came to one of those profound realizations you can only come to in a dedicated therapy session: by being diagnosed with SPD, I had transitioned from a mental illness to a neurological disorder, and by default, had crossed categories from stigmatized to understood.

For 13 years, I was told that I had Panic Disorder: a psychological disorder characterized by intense anxiety and unpredictable panic attacks. It has always been terrifying, always wondering if I'd have one in the middle of a loud, bright, crowded event, embarrassing myself and those around me. Everyone I knew treated me kindly on the whole: as a woman plagued by her own unexplainable demons, and frustration arose - in both me and those around me - when I was unable to "overcome" those demons in certain situations. There were the excuses ("she came down with a cold and couldn't join us tonight"), ultimatums (seek even more help, or risk losing out), severed relationships, and strained friendships. With this title, I was stigmatized.

Stigmatism is an ugly place, filled with people who mean well, but cannot commit to true understanding. In our society, and in my own little microcosm, people with mental heath issues carry the immense burden of stigma. It's unfortunate, truly, as people with mental health issues desperately need the dedicated support and unyielding understanding of those around them. Instead, this seemingly nebulous world of "mental illness" leaves people baffled and afraid. We are, of course, often afraid of the things we cannot see, and therefore cannot understand. (AIDS calls for runs, breast cancer races for a cure, MS and childhood diabetes means fundraisers and colorful ribbons, but who champions the mentally ill, the illness hidden inside?)

My therapist told me of a psychological study, where "normal" individuals were instructed to check into a mental hospital, claiming many symptoms of schizophrenia. All individuals were swiftly given diagnoses based on their claims, and many spent up to three months being institutionalized before they could convince the doctors to some degree that they were actually mentally-sound. When in the institution, the other patients were hyper-aware of the fact that these participants were not "one of them," even though the doctors refused to believe this was the case. Once finally released, they carried around a permanent diagnosis of their supposed "remission."

I spent nearly a decade and a half carrying around the title, the guilt, and the assumptions; three weeks ago, purely by changing the name of my "issues," I was able to shed the stigma (unfortunately guilt is a burden that takes a longer time to unsaddle). Suddenly, my diagnosis is neurological-based, and now the blame has shifted from the less-than-able individual to the miswired brain.

It's been a strange transition. My first reaction was of joy for a myriad of reasons: I'm not alone, I can improve significantly, I am understood by a unique group of SPD individuals. Suddenly there are awareness bracelets, t-shirts, magazines, special doctors, weighted blankets, sound machines - October is even Sensory Awareness Month. Loved ones are flocking to my side in a way I've never witnessed before. It's a double-bonus: it's no longer my fault, and it's got an apparent fan-base.

My second reaction has been of anger and disappointment, seemingly screaming out from my own self at 14 when I was diagnosed with Panic Disorder. She keeps saying, over and over to me, "our symptoms have remained the same, it was only our diagnosis that changed, so why was I misunderstood and why do you reap the benefits?"

If I haven't changed, then why this renaissance? More importantly, why didn't 14-year-old-me deserve this renaissance, this outpouring of love and support from all directions? (She too felt the same anxieties, she too startled easy, she too struggled to fall asleep.) Why, after 13 years of multiple therapies, disappointment, isolation, the daily fight against the Loud, Anxiety-Provoking World does the changing of a single title change everything?

Wednesday, September 1, 2010

SPD at Two Weeks

It’s my two-week OT-iversary, and considering the vast goings-on of the past few weeks, I can honestly say I am still feeling calmer overall and less jumpy than I had two weeks and a day ago. I am still brushing as often as possible – according to my OT, everyone’s needs are different with this technique, so more isn’t necessarily worse – and I am attempting to follow her guidance to blitz the gym, because eventually (somehow), we’re hoping the gym will serve as a replacement to the brushing.

I have also started following some of the food-portion of my Sensory Diet, which means a reduction of gluten and dairy, and an increase of Omega-3 fatty acids. As far as I understand, Omega-3s maintain the fluidity of cell membranes, and somehow make neural connections smoother. I’m not quite sure, but it can’t really hurt to include more salmon and flax seeds in my diet. I haven’t looked into the theories behind going gluten-free and low-dairy, but I can say that I honestly feel more bombarded by stimulation about a half hour after eating a high-gluten meal, so I bet there’s something on-target there.

My next step in OT will be a listening program – essentially an integrated neural exercise program of sound, vision, and balance. No news on this until September 15, when I have my next appointment, but I’m happy to know there are more tools coming down the pike.

Yesterday marked my first day of graduate classes, and considering I typically would’ve been anxious to the point of on-going and unrelenting frenetic discomfort, I was more normalized in my anxiety. It has been six years since I’ve been a student, and to be perfectly honest, I don’t remember exactly how it works. Since joining the working world in 2004, I haven’t had to sit perfectly still and focused for more than a few minutes at a time, and taking breaks – even just to stretch – is never a problem in an office. I forgot it’s the exact opposite in the classroom.

What stuck with me most was how difficult it was to focus beyond the oppressive glare of the fluorescent lighting in the basement classrooms, which were also lined with shiny floor tiles, and echoed. I’d be surprised if anyone else noticed the difference, but the combination made me zone in and out of focus, unable to transition from taking notes to looking up clearly at the professor. I felt like I had to hold my head, at least on one side, to keep myself aware and in the mix while squinting, and my hands were clammy the entire time. I know it’s the SPD talking, plus first-day-stress, and hopefully some of that will subside as I get used to being in the environment and continue my OT. A few classmates suggested I wear sunglasses, but I’m not Paris Hilton, and I’m still debating whether or not to tell my professors about my situation, in the event they see me breaking focus during a lecture, in sunglasses, and bolting out their door.

The best part of the past two weeks, aside from the positive effects of brushing, has been finding D. and B., two fellow twenty-something SPDers. We might as well be the same individual, our stories are so similar: from feeling quirky and different as kids, to what situations and senses are problematic, to how we deal with them, and how we perceive we’re seen by others. We all were diagnosed in our twenties – D. has had two and a half years to deal with his, and B. is in the process of hunting down an OT, so while we’re in different stages, we still have the same tales to tell. It’s bringing an immense amount of comfort to talk to people who know this as intimately as I do. Most importantly, they’re a grand reminder that I am not alone.

I will close this post with a short story about an email I received from a dear friend. Hours before I was officially diagnosed, she and I met in Trinity Churchyard for lunch. The day was parchingly humid, the summer tourists were out in full force, and there was a blur of people and sounds and heat. I couldn’t find a spot to sit where I didn’t feel personally bombarded by the sensory experience around me. It affected my demeanor, our conversation, and lunch was cut short when in the midst of all the sensory chaos, a band started to play. I left lunch feeling frustrated at my shortcomings, oozing with sadness and self-loathing. Later that night, she flew home for vacation, and I received my diagnosis, which I shared with her in calm detail a week later in an email, thanking her for being my final catalyst for understanding.

In her response, she told me that she had been recently practicing various forms of eastern prayer, and how that same evening, she had thought of me during her chants, having felt helpless in the presence of my obvious distress hours earlier. The universe is a funny place indeed.

Monday, August 23, 2010

Bathroom Brushing

This sensory diet should theoretically be a no-brainer. How hard is it, really, to take a few moments out of your day every 90-120 minutes for a quick, therapeutic brush-down? I can reach all of the required spots. I own a brush, and it’s in a makeup case. Total anonymity. Alright, it gets a bit more difficult when it’s paired with jumping like a sugar-high kid, and doing push-ups against a wall (which, coincidentally, is having a wonderful impact on my arms), but still doable. Now take these seemingly OCD quirk-filled behaviors, and pair them with a very public setting, such as an office environment. I can’t exactly brush and jump and press at my desk without drawing copious amounts of unwanted attention. Even in the bathroom, boldly – sans stall – I’ve gotten sideways looks and ill-spoken commentary as I tried to convince myself it looked like I was merely using a lint brush. Once, after a detailed explanation, other people hopped with me in support.

Fine, to the bathroom stall it is. There’s less of a chance that anyone will notice the new girl and her crazy behaviors in the privacy of a stall setting. Besides, in an office filled to the brim with engineers, the occurrence of running into another female in the bathroom is highly unlikely.

Except, of course, this morning. My watch signaled that it was time to partake in my sensory diet, and makeup case in hand, I walked casually to the bathroom, hoping to go unnoticed on the whole. As I reached the front office door, a young woman, well-dressed and previously unfriendly, cut in front of me, and I proceeded to follow her all the way to the small office bathroom, through another two doorways. We locked ourselves into stalls at the exact same moment. I faced a choice – audibly brush in the echoing bathroom (and jump? I mean seriously, how does one even begin to explain jumping noises in the bathroom?), or don’t, and just abandon plans. But I had already felt myself getting a bit agitated from sitting under the glaring office lights before a sharp computer, and I had planned the required diet around my trip to the gym (elliptical machines and sweaty brushing does not a fun time make), so I decided to go for it. She said nothing – she couldn’t see me, she doesn’t even know my name, but I winced with each whooshing brush stroke. I know that if it had been me, I’d wonder what the hell was going on just over the partition. I’d be armed with confused remarks for coworkers (“So I just went to the bathroom, and it sounded like someone was grooming in the stall next to me. So freaking awkward!”)

Although she took her time, she eventually left me and my brushing. I remained, an embarrassed and unfortunate bathroom gymnast: taking the gold in the wall press event, silver in the jumping finals.

Sunday, August 22, 2010

Celebrations and Setbacks

 I texted myself this yesterday while at a bar-b-que for dear friends:

"What are you supposed to tell someone when they ask if you're ok? There are no real words one can assemble on the spur of the moment, casually, to say, 'No, I'm not ok. I was just diagnosed with SPD, and this really is a lovely party, but my brain is reeling. The dog won't stop circling my legs and the squeak of the cooler behind me is making me antsy. No, because there are at least 20 distinct voices that I cannot track out here in your beautiful boutique back yard bursting with peach trees, and there are too many blades of grass, and I can't sit here when the air doesn't move past my skin and the sound of meat sizzling on your grill is painful.' And so I sit inside, a redundancy, for the millionth time of my life, wondering who will notice and what they will secretly say later about the unnaturally quiet, agitated-looking girl who has disappeared from the party."

I could have written this when I was a young teenager, last year, or a few days ago, but it was just yesterday, a mere three days into my new sensory diet. I found myself needing to escape the drone of sights and sounds I could not control, the spin of people and beer and birthday celebrations, for the quiet solitude of indoors and the whir of a floor fan. As I texted these thoughts to myself to share with you, I noticed my mental patterns as well, the ones that will take even longer to break. Accusatory, I got angry, split off,  intolerant and disgusted to be associated with myself. In response, I became teary-eyed and hopeless. We are a sorry lot sometimes, me and myself, used to beating us up internally for these formerly meaningless and quirky behaviors that have been out of our control. For someone battling an unknown neurological issue for decades, stigmatized for the things I couldn't "handle," this unhelpful behavior and unnecessary thought pattern is just natural, par for the course.

But then something changed. I got sick of it all, of the habitual responses, of hating myself momentarily; me: sharp-witted nut with a huge passion for people and bright smile. I stopped to remember the things I had witnessed in the past three days: the diagnosis and the hopeful OT, the brushing and the first sips of peace, the look of astonishment on my psycho-therapist's face when I stepped calmly into her office, making Josh laugh in disbelief, the excited embraces from my parents, the boundless support of some old friends. I reminded myself that I wasn't to blame for what I have always perceived to be my Mess. I told the bully to just shut the hell up.

I stepped back out into the evening, a bit skeptical, with dessert in hand and banter on my tongue, sat down in the chair I had all but abandoned a half hour before, and blended back into the party. It was surprising and seamless. The movement had slowed down as party-goers lounged, beer in hand, talking in groups. The dog paused for respite on a blanket before weaving her way back toward my waiting arms. I posed for a series of ridiculous photos. No one was the wiser.

I am impatient now more than ever, pacing back and forth in my brain, fingers crossed, hoping for a cure-all. I know this "healing" process comes with no lifetime warranty, and there is no guarantee that all of my processing difficulties will go away, leaving me happily rewired and set for a perfect future. Yesterday's setback gave me hope, in a backwards manner. A mere three days into treatment, I was able to get beyond myself, to start shaking off the cloak of stigma and upset. Baby steps are monumental moments after all.

Thursday, August 19, 2010

Answers - OT, Session 1

Yesterday was my first session with the OT, and I have an official diagnosis. According to her, I do indeed have Sensory Processing Disorder - this is the overarching condition. More specifically, I have Sensory Modulation - Over-Responsivity, affecting vision, auditory, tactile, and vestibular functions. To put it simply, my wiring is such that I over-react to sights, sounds, touch, and the movement of my body in space. She also said it seemed my vision and my auditory system were in competition, and that I had trouble compensating for both, leading to an overload, and often, anxiety attacks.  

I spent an illuminating hour in her office, which is reminiscent of a rowdy two-year-old's dream-home. There is an entire room dedicated to tire-swings, bungee cords, and an assortment of play tools I couldn't even begin to comprehend. In fact, I was startled upon walking in - remember, I'm sensorily over-responsive - and between the clash and boil of bright colors and tangle of play-things, I did what I've learned to do over the years, and just look the other way. While I'm over-responsive, many children diagnosed with SPD are under-responsive sensory-seekers (oftentimes, these children spend a good deal of their time crashing into items, throwing objects on the floor, hitting other children), and the office seemed geared towards them.

We sat in kiddy chairs at a tiny table. A machine with rainbow balls of bubble gum stood to my left, a nickel already in the slot. She told me that I was a textbook case, and that many adults currently live frustrating lives with this neurological disorder, misdiagnosed with ADHD, anxiety, or even depression.

I was put on a two week "sensory diet," called the Wilbarger Deep Touch Protocol.  Patricia Wilbarger, a Clinical Psychologist and Occupational Therapist, is a leading expert in the area of SPD/Sensory Defensiveness/Sensory Integration (SPD is the newest term), and she developed deep-pressure sensory modulation techniques to counteract SPD symptoms. The theory goes that this technique (referred to as DPPT - Deep Pressure and Proprioceptive Technique) uses stimulation to help the mind-brain-body organize and begin a rewiring process. In other words, it helps inhibit the sensitivity of the nerve receptors, allowing the person with SPD to transition from one activity to the next without issue, and instills enhanced movement coordination and sensory modulation. To put it simply, it reduces the things that lead to discomfort and anxiety.

Not surprisingly, this sounded ridiculous to me at first. She took out a white brush, which reminded me of a softer shoe-shining brush, and told me that this little tool was an integral part of this process. She instructed me to take a break every 90-120 minutes in the next two weeks to "brush" myself - my arms, legs, hands, and back if I was able to recruit a helper (thankfully, my boyfriend is open-minded and caring, and he's been a huge help in the past 24 hours). Along with this, I was prescribed to do 10 wall-presses (like push-ups against the wall), and 10 jumps - these activities would train my brain to realize the location of my joints in my body, and the location of my body in space (one of my biggest issues dating back as far as I have memory). I was also asked to start taking Omega-3 pills, which enhance the fluidity of nerve cell membranes.

She reminded me that the most important part of this entire process was my own understanding of my body, mind, and correctable malfunctions. After 27 years of unexplainable "quirks" and less than desirable behavior, I have quite a bundle to carry - the guilt of ruined family gatherings, missed parties, and frustrating dates. She urged me to let it all go - to remember that my signals have been crossed for nearly three decades, and that I can improve. She encouraged me to reach out to my family and friends, and begin educating them all. She ensured me that this diet was just the very first tool in her arsenal.

I left the OTs office feeling hopeful and curious about the weeks to come. Once I got home, I began following my sensory diet, brushing and jumping. By the time Josh showed up at my doorstep, two cycles into the DPPT, I felt light and giddy (a free feeling I don't ever remember encountering before), and I had to assure him, while giggling ridiculously, that I wasn't drinking. During the evening, he pointed out that while brushing, I got visually progressively calmer, to the point where I actually had to lean my head on the back of the couch.

I am over 24 hours into my diet, and I am startled to already see results. Last night, for the first time in months, I fell asleep unprompted while feeling quiet, not agitated like usual. The heavy jet-pack of anxiety that has been strapped to my chest since I was a kid is nearly completely gone; I feel like I'm breathing. I feel light-headed, as if I just got off a dizzying ride, but I'm not concerned at all, and I'm enjoying noting the lack of anxiety where it once stood so firm. I walked many avenues crosstown to the bus this morning, never once checking my watch fearing I was running late. I met with two of my fellowship clients today, and I spent no time agitating in advance about preparation of materials - in fact, the time I normally spent silently stewing and second-guessing my lesson plans was spent emailing dear friends and catching up with colleagues (both of whom asked me why I was so calm today). I noticed an improved connection with my clients, and my new-found flexibility put one of them, who is normally closed and anxious, at incredible ease.

It's time for my second to last DPPT work of the day. Funny, as I am still feeling that calm wooze rushing over me from an hour and a half ago. The TV is on in the background - the lights aren't bothering me as much tonight. Neither is the rattle of the air conditioner. Seems like we're onto something.

Wednesday, August 18, 2010

Countdown to OT - Intake Session

T-minus 10 minutes until I leave for my first Occupational Therapy (OT) intake session. I'm so nervous, I'm just about ready to jump out of my own skin. Ironic, because the very thing I'm feeling now is what I'm hoping gets corrected through this kind of therapy.

Monday, August 16, 2010

Coming to my Senses

It has taken 13 years and a veritable force of medical and mental health professionals, but at 27, I can finally say that I have come to my senses . . . or well, come to an understanding of my senses. For nearly a decade and a half, I have been operating under the naive assumption that I have Panic Disorder, a diagnosis that fit me not unlike a warped pot-lid. It's true, in certain situations, my palms sometimes get sweaty, my heart often races, and I am thrown into a tailspin of symptoms and reactions. These feelings have caused me to avoid similar places, and so a cycle of fear and avoidance had developed into an anxiety disorder.

The question no one ever stopped to ask, however, was "why?"

Why were these panic-related places always auditory and visual menageries of unfortunately massive proportions? Why would my auditory focus veer in and out of private conversation like a broken lens, fixating on the din of city buses/tourist-chatter/sirens/heels-on-sidewalk, and why did these sounds fight for the foreground in my head? Why did crowds of people in daylight seem to radiate as sharp outlines with millions of points of detail, and at night, why did their over-clarity feel like drilling behind my eyes? And why, after a day of "bombardment" - (of simple halogen office lights, crispy computer screens, and complex commuting) - did I feel internally shattered? Why did I crash-land under bizarre amounts of extra-soft blankets (5) in the depth of summer, the air conditioning cranked high, my pulsating body and mind unable to break free into rest? Why did I ask couchmates for sitcom punchlines, and accidentally bash my body into furniture, only to forget it all soon afterwards?

Simple, my new therapist said last week. Sensory Processing Disorder. SPD. Although nearly 50 years in the making, it's only a decade old in therapy circles, and is based upon the research of occupational therapist and developmental psychologist, A. Jean Ayres. In the 1960s, she described seemingly strange sensory "sensitivities" as an inefficient organization of sensory information within the nervous system, and she believed this inefficiency led to a multitude of symptoms. These symptoms oftentimes come with a host of secondary symptoms - one of them being anxiety, my old, dear friend.

As the disorder is young compared to most others (it is being petitioned for entrance into the next DSM in 2013), it often is applied to children who show tendencies to avoid or crave touch, movement, taste/smell, visual, or auditory stimui. I'm a child of the 80s, and we had no such explanation for the same tendencies. Only now, as SPD organizations are popping up, and mental health professionals are being trained on this disorder, are adults putting together their puzzle pieces and stepping forward.

I've started this blog to capture this experience as a very self-aware Master's student, from the psychologist's initial diagnosis to occupational therapy and beyond; it's an unexpeted plot-twist in my life. My hope is that it can be a companion to those of us adults who are playing catch-up with our sensory-selves, after many years of misdiagnosis, isolation, and confusion.