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Thursday, August 28, 2014

Voices Don't Always Carry

For someone who shirks loud noises and keeps different decibel earplugs on her person at all times, I am a very loud speaker. With my viscous, deep, and hazy voice and high energy level, my words often stumble out from between my lips in a clamorous barrage - a well-thought-out flow of booming, high-octane ideas. It's just who I am, who I've always been.

In the summer between my fifth and sixth year, I went to day camp for the first time and spent eight hours a day outdoors squealing and chatting and singing with my new friends. It was the summer I learned to spell chicken thanks to a ragtime song about paying rent and Judgment Day and played my first hand of Miss Mary Mack. Old home movies of the time show me in performing mode 24/7, ready to steal any moment in front of my parents' chunky 80s video camera and grace the world with my melodious presence. With my thick bangs brushed out and my hands neatly folded, I sang. I sang Doe a Deer on the back deck of my family's country house, wheezing every single syllable as I demonstrated where in the scale each note would fall (the last "doe" was a leap into the air). I sang Day is Done from the stage of my unfurled bed, minutes before bedtime, in a pink nightgown. I sang Down by the Bay over morning meals of english muffins and melted cheese. Breakfast theater.

As the summer faded, so did my voice. My once high-pitched girly squeak was replaced by a croak and honk not unlike that of a 12 year old boy undergoing puberty. And yet still I sang The Cat Came Back as I pretended to prepare an elaborate meal from the bathtub, and Miss Sue (from Alabama) as I lugged my lunchbox into the first day of first grade. By then, my voice had begun to weaken, but this didn't phase me. In the playground, I taught my new friends the words to every song I'd learned over the summer, eagerly correcting the melody as I pumped my legs on a tire swing. All was well until music class. Lead by a petite, strict woman, our new music classroom was filled with enticing instruments, like the glockenspiel, which I adored immediately almost as much as singing. (Even back then, rhythmically slamming mallets against metal slats was appealing, of course.) But I was most interested in singing. I had a gift for carrying a tune, I just didn't have the vocal power. I loved the new songs I learned in school about kookaburras and sakura - even songs about the thin, French pancakes called crepes (can you tell I went to an international school?) By the late fall, I had sung myself completely voiceless. My parents took me to an otolaryngologist who said I had nodes on my vocal chords, and I swiftly started speech therapy. Turns out I had somehow forgotten how to speak properly, and I had to retrain my vocal muscles.

Leave it to an SPDer to blow her voice out completely.


I went from speaking in class to writing things down, from singing in music class to playing the triangle; the sad, sullen ping a reminder that even the little bend of metal had its own voice. In speech therapy, they told me to breathe and speak like I had a bird sitting on my shoulder. It was Halloween, and all I could think about was donning my princess costume and begging for peanut butter cups. Through gestures.

My voice eventually returned, but it had morphed quite dramatically. In high school, a beloved drama teacher - a woman known for her crown of billowy, white hair - once told me that it took many famous movie stars years of smoking and drinking of dark whiskey to establish a voice as mysterious and evocative as mine. In college, friends asked me to speak on their campus radio shows, and in my 20s, I found that my rasp was alluring to even the most elusive male. I used to call my faux radio show W-RACH, FM, home of Rachel's smooth, smooth voice.

And then, three weeks ago, my voice disappeared again. I won't say it was a complete surprise. The tug of adulthood and its myriad of responsibilities and stressors does lead to many discussions and debates. When I am stressed, my SPD goes unchecked, and my senses are more apt to falter. I like to think that my vocal issues are the result of the eighth - and most contested - sense, interoception. Unable to determine what's going on within my own body, I am frequently seeking food to fill my belly in spite of being full, cool air on my skin in spite of being cold, and a slower pace to quell my racing heart in spite of its already calm rhythm. In the same vein, my internal structure must not be alerted to my pitch or tone, and so I speak and speak, louder and louder, until I am left with words to say but no voice with which to convey them.

The ghostly croak and honk from my childhood sits with me now, my throat familiarly achy in a muscular deja vu. I am once again about to start speech therapy. My work supervisors have been generously speaking on my behalf. Last week, my husband pressed a tiny bell into my hand to summon his attention - it's not unlike the ping of my childhood triangle. Nothing to me is lonelier than the spill of thoughts without verbal release.

In my head, my thoughts race with no escape. At least this time I have this wonderful blog to give me a voice when pitch and tone won't cooperate. At least I know that you're listening.

Monday, August 18, 2014

In Honor of Year Four

Sometimes the light's all shinin' on me
Other times I can barely see
Lately it occurs to me what a long, strange trip it's been.
-The Grateful Dead



If my Sensory Processing Disorder and I were married, today we'd be exchanging fruit and flowers in celebration of our fourth anniversary. How is that even possible?! It's been a whopping four years since I received my diagnosis of SPD, and four years and two days since this beautiful little blog - nascent and wide-eyed - stumbled into the blogosphere. Back then, it was just the three of us: me, the SPD, and a blank page, and I still can't discuss the history of my diagnosis without the history of Coming to My Senses. They are forever intertwined in my mind. 

In my first post on August 16, 2010, I wrote:

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 unexpected 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.

I knew that reaching others was a stretch at first. I was still two full days away from my official OT diagnosis, and at least a year or two away from any semblance of acceptance. I knew absolutely no one else with SPD, which only heightened how lonely and strange I felt within my new proposed diagnosis, and I was dismayed to find very little information on SPD that appealed to adults. It seemed that I was a misfit, an adult trapped within a child's disorder, and I was destined to wander the desolate diagnosis alone.

It's why I started this blog.


If I was to be an SPD Adult, Party of One, I felt I deserved a companion guide, even if the words I would ultimately turn to for comfort would be mine - a shimmery illusion not unlike a parakeet admiring her own plumes in a tiny mirror, taken aback by her own reflection. And I figured that if someone else stumbled across this blog in the course of their own sensory journey, perhaps it'd comfort them to know that they were in good company.

Even before my diagnosis was official, I knew deep in my gut that someone - anyone - had to begin telling this story. It's what I say to adults with SPD now, and I think it's the most crucial thing that we can do as a somewhat-unrecognized contingent of a hidden disorder: speak up - and not just to one another in the community, but to anyone who will listen. No one knows what we're going through unless we have the confidence to open up and detail our experiences, intimate crumb by intimate crumb. This is a scary process. It involves trusting that the other person, perhaps unfamiliar with SPD, has the capacity to be compassionate and understanding. This is a risk, a gamble we must take in order to make any progress; it's a limb we must perch hesitantly upon even as we question its stability.

Four years later, I look back at my path and the way it has unfurled, and I am incredibly humbled. I can't believe how far I've come, how far this blog has come. What started out as a naive young woman's effort to connect to herself, her sensory issues, and anyone within blog-shot has become a mainstay of the SPD community. Since 2010, I've reached hundreds upon hundreds of SPD adults, SPD parents, and therapists, and shared my journey with them. I've made friends with researchers and authors, and I am honored to call them my mentors. I've taught mental health professionals about SPD and the way in which related psychopathology manifests itself in adulthood when gone untreated, and I've helped spearhead an incredible online support group for my peers. My writing has been featured by major community publications, and my voice has been captured as an expert on this subject.

What I want to say is this: Really? Little old me? Are you sure? Thank you. Thank you to everyone who has believed in me, who has turned to this blog during those tender pre- and post-diagnosis moments and pointed to it as proof, and especially to those who have asked for my support and advice. I've been you and I am still you, and it's an honor to speak on your behalf.

These days, I am no longer the sole explorer meandering the arid steppes of SPD. Amazing blogs written by passionate and clever adult SPDers crop up daily, and I read each one with vigor. I watch with pride as some of the most amazing SPD adults I know take dramatic steps to improve their lives, navigate their limitations, and reframe their thoughts. I am astounded to witness advocacy in action, the ways in which our very words can and do bring attention to our cause.

And yet, I dream of a time decades from now, when our children's grandchildren will connect with their sensory bodies for the first time, a place where we will no longer exist as a sub-group, when there will be no need for our clarion call outward, for a blog like this telling the story of a belated diagnosis and one woman's efforts to catch up. It's a time and a place where every child will receive their proper SPD diagnosis early, undergo extensive treatment, and lead the sorts of unhampered adult lives we can only begin to imagine. 

Monday, August 11, 2014

"When Life Gives You Lemons" - Meet Vikiann

In my advocacy work as an adult with Sensory Processing Disorder, I've had the incredible fortune to come into contact with some of the most amazing adults who also happen to have SPD. One such person is the charismatic Vikiann Kelly-Quirk, who I met through my Facebook group, Sensory Processing Disorder Adult Support. With her background in mental health and sensitive, open demeanor, she reminds me of myself soon after my own diagnosis in mid-August of 2010. I admire her willingness to speak candidly about her feelings and experiences, and continue to marvel at her growth.

This post, written as a guest-post for CTMS by Vikiann in early July and inspired by something she'd said in the support group, expresses some of the emotional turmoil that comes about soon after an adulthood diagnosis of SPD. It's part of the process of a delayed diagnosis - of any diagnosis that takes decades to formulate, even as we fight the sneaking suspicion that we are different and something crucial is missing. Although we may struggle during this early post-diagnosis phase, we must never forget that things do improve with the right combination of therapies and shift in mindset, even if we must always contend with some degree of SPD.

Vikiann, thanks as always for being so open and for sharing your story with the CTMS readers. It's such a pleasure to see you maintain your poise as you wind your way through post-diagnosis life!

Sit back and enjoy yet another perspective in the complex tapestry of SPD.

-Rachel





Life, as for many of us, has handed me a lot of lemons. I’ve done what the saying suggests and made gallons of lemonade. Sounds fabulous, right? Fabulous often requires significant work and sacrifice. I squeezed, sometimes with both hands. Sometimes until my forearms burned. Other times I tried to gently encourage juice from the flesh. I added sugar and water and stirred. I overcame. I changed circumstances. I changed my life. I changed myself.  

Years of therapy have helped me to see the value in my experiences and have helped me to continue to move ahead. I had been working with the same therapist for almost two years and been doing a lot of deep, painful work. I had made significant progress with my generalized anxiety and depression. Both felt really manageable but there was this constant buzzing in my chest, unease, a never feeling good that lingered in me. I brought it up to my therapist and she began to ask me questions about my responses to things and if I knew what sensory processing disorder was. I knew a bit about it because I had taught nursery school and had a number of children with the disorder in my classes. But it didn’t look like me. She sent me links to a few sites, this very blog, and recommended I check out the book “The Out-of-Sync Child" by Carol Kranowitz. I’ve always been a very good student so I took to this like I did every assignment in school: I researched. I read. I studied. I did the same thing in therapy. A topic would come up and I went into student mode. Why should this situation be any different? So I checked out all the links, read this blog from top to bottom, and ordered the book. That all happened the same night my therapist sent me the information. The more I read, the more I saw myself on the screen and in the pages.

My recent work in therapy has been on connecting my head, heart and gut. When I started my SPD studies, I felt like I was doing a spectacular job of connecting the three and wouldn’t have to worry about getting stuck in my head anymore. Unfortunately, I found that I was getting caught up in my head more and more. Occasionally I would leave my student role and would find my gut telling me that no matter what the books, websites, or anyone said I had SPD. I’d feel my heart join in and would fall to pieces over potentially having this disorder, having yet something else on my resume of dysfunctions. When all three came together there was fear, pain, and tremendous relief. Regardless of how I was feeling, I continued to try the things that other people with SPD did to regulate their systems and found that some of them changed how I felt in my body. Some of the techniques did so dramatically and made me feel a peace within my body that I had never known before. I started to feel excited about feeling better in my body, feeling better about myself, feeling better in my life. But it still wasn’t enough.

During this time, I had reached out to Rachel and she referred me to an occupational therapist she had seen and found to be helpful. I made an appointment. I proceeded to freak out every day of the three weeks until the appointment. I freaked out about what the occupational therapist would find or not find. Would she find that I have SPD? Would that be a relief? Would that be awful? Would she find that I didn’t have it? If I didn’t have it, would she think I was crazy? Dramatic? Wasting her time? Hello, old issues. I’d love to say it’s nice to see you again but you aren’t the best of company. The day of the appointment arrived so I packed up my fear and anxiety and trekked to her office. I was there early of course because what other time is there to get to something? She opened the door and my whole system lit up like a pinball machine at the sight of all the things hanging from the ceiling and splayed across the floor. My eyes did a little dance and I immediately turned away in hopes of avoiding getting the usual dizziness that resulted in these kinds of situations. In that split second, I thought of Rachel’s experience the first time she walked into this very same room. I proceeded to hang my stuff up and bolt into the bathroom. I took some deep breaths and tried to focus my eyes. I rushed myself out of the bathroom because I didn’t want to keep the OT waiting. Anxiety wins over self-preservation almost every time. We went to another room that was way less “interesting” and I sat with my back to the dizzying distractions. We went through my history and the evaluation I had completed. As she checked things off, applied numbers to them, and then added the numbers up, it became glaringly obvious to me: I have SPD. As that thought entered so did another old friend: “You’re being dramatic.” I tried to push that old voice aside and doing so was made easier when the occupational therapist looked at me and compassionately said, “I think we can both see where this is going.” She didn’t even have to say those three letters or the words they stood for. I knew. I knew in my head. I knew in my gut. I knew in my heart. And I knew in all those places that I wasn’t being dramatic right now nor was I being dramatic in the past.

I left the office full of mixed emotion but held onto the relief and happiness. I immediately added everything she recommended. I had squeezed all the juice out of the SPD lemon and made delicious lemonade because that’s what I do. I see something broken in my life and I fix it. I overcome. I change my circumstances. I change my life. I change myself.

Fast forward two months post first occupational therapy appointment. I had my second occupational therapy appointment right before I was about to take my first trip post diagnosis. Traveling has always been awful for me. Pre-SPD, I didn’t understand why I over packed my suitcase, wanted to know every detail I could about the cab, the flight, the place we were staying, how we were getting there, wanted to be at the airport two hours early, checked my over packed suitcase another six times, and still felt the hornets buzzing in my chest. The hornets whirled and swirled the whole time I was away and sometimes escaped via meltdowns but always returned to their nest in my chest. Even once I am home from the trip, I still feel like my insides had been assaulted. When the chance came up for me to go to an amazing week long training and see my best friend at the same time, I wanted desperately to go but feared so severely this trip turning out like all the others, except I wouldn’t have my husband to hold me together as I fell apart. I decided that I had my tools, was going to use them, and I was going to be fine. I packed all my SPD goodies, all my fear and anxiety, and my feeling of being completely disorganized and away I went. I held myself together so tightly that when I came home, I busted at the seams and have had an incredibly difficult two weeks since.

These past two weeks definitely contributed to my husband and I having a fight of epic proportions, which is incredibly unusual for us. It was over my SPD or, more specifically, how my SPD keeps us from just picking up and going somewhere or doing more than one thing in a day. I've tried to handle this issue by asking him to prioritize the things he wants to do in a day so I can choose what I participate in and, by doing that, can be in the best possible shape. It didn't work out that way due to a variety of things having been said certain ways and other things not said at all. In this fight I found the reality of my SPD. I found my anger. My anger that SPD exists. My anger that I have it. My anger that my life has always been harder because I’ve probably always had it. My anger that my life hasn’t necessarily gotten easier now that two professionals told me I have it and ways to cope with it. The reality is I can’t squeeze this lemon into lemonade in the way I used to and I am angry about it. I feel like my wings have been clipped and I can no longer get off the ground and fly to a better location. A location where I can just go do things, maybe even more than one thing in a day, and not have to prepare for every minute of those things that I am going to do. But that isn’t my reality. I can’t do anything without preparing for it. I can’t get out of bed in the morning without preparing. I have to use a specific alarm in hopes of my system being less than completely overwhelmed when it goes off. I get up and try to feel my feet on the floor and keep my eyes half shut to avoid the light of the alarm. I have to prepare my skin by brushing it so I can get dressed. I do so in hopes of avoiding feeling like I am going to crawl out of my skin. I have to decide what to eat for breakfast based on what I hope won’t make me gag. I’m angry that this is the start of all of my days. I’m angry that all day long I think about SPD and what it causes me to feel and how I try to manage it many days to no avail. I can’t come home and relax because SPD made me run on overdrive all day so I am out of gas and crash. I am angry that I can't be excited about doing something, anything, no matter how many times I’ve done it before. I can’t be excited because that emotion gets stuck in the trunk as fear and worry drive. Only after I convince the fear to step out from behind the wheel and tell worry to move over can I hope to be excited. Even after all that work, I'm not really all that excited because I am anxious that the situation is going to change at some point and I'll have new information to tango with. 

I am angry that SPD steals my joy, my internal peace, and impacts my relationships, especially the one with my husband. I am angry that SPD impacts me every second of every day and that I don't feel even close to good most days. I am angry that SPD is so hard for people to understand, even those closest to me. I am angry that my diligence made me smarter but doesn't make SPD go away. No matter how many tears I shed, no matter how much I wish to not have it, no matter how angry I get, no matter how much I pretend I don't have it, it is still here. It is still inside me. It is still the way I exist in the world. I am an SPDer.

***
Vikiann is an SPD adult and owner of VKQ Pilates in New York City.

Tuesday, August 5, 2014

Hit the Deck

In times of crisis, be they emotional- or sensory-based, I have the strongest urge to press my entire form into the floor. Often I'll rise from the couch or the dining room table without a word, gasping for breath, the crush of input and anxiety thickening my lungs, and I will slip away into the bedroom. The blinds are always shut there, the slats revealing just enough daylight for me to navigate my way, bruise-free, through the door, down the small corridor, and around the edge of the mattress to where there's a perfect Rachel-sized spot between the bed and the wall. I will drop to the ground then, supine, with the backside of my entire body coming into contact with the floor. I will feel the mix of rug and wood against the underside of my thighs and the crown of my head, and only then will I cry the heavy, heaving cries of SPD - a volcano of emotional eruption. The breathless tears always run their course within minutes, and I often arise dazed, as if having been momentarily possessed by some powerful, indescribable force.

I hit the deck while visiting my parents the other day, simply slipped off of their tan leather couch to the floor below, taking shallow breaths through tears until I was once again coherent. Having parented me and my SPD quirks for over three decades, this did not strike them as odd any more than my deep pressure brushing or fidgets strike them as odd. The following morning over breakfast, my mom recalled my life-long penchant for laying on the floor. She remembered that I used to come home from preschool as a toddler, grab my favorite stuffed animal around the scruff of his neck, and sprawl out across the living room carpet, a ritual that I found particularly calming. In childhood, my sister and I would take to the floor when watching our favorite shows on TV. While she sometimes preferred the soft quilted bed above, I rarely joined her there, as I felt grounded on the floor, soothed and focused on the colorful Nickelodeon cartoons as they splashed on the screen. Even upon moving out for the first time, as I packed my childhood belongings into cardboard box after cardboard box, I found myself so overcome with the weight of change that I sunk once again to the ground, limbs akimbo, in distress.

I didn't know it then - not after hours of intense preschool playtime or halfway through SNICK or even sitting amongst the trinkets and talismans of my early life - but my insistence on connecting with the floor was yet another one of those primitive sensory tools I had fashioned myself when an early diagnosis of SPD wasn't an option. I could add so many of my current tools to this list; even my favorite fidget, a tiny fur-covered turtle, was a product of this earlier era, a time when none of my unique behavior and needs had names, and I did certain things for no other reason besides they felt right.

I know now, almost four years into my SPD diagnosis, that in laying down sprawled across the floor, I gave my otherwise dysregulated body proprioceptive input through my own weight. Like a reverse weighted blanket, I pressed against the ground, feeling where I ended and where the challenging, confusing world began.

These days, I am a woman flush with sensory tools. A visit to my apartment reveals everything from fidgets to brushes to weighted blankets and even a trampoline. But sometimes, when the world is just a bit sharper, when sounds echo through my every sinew, and adulthood throws yet another wrench into my life's plans, I hit the deck. It is here that I am a climbing vine reaching across the stable plane to cast myself into the sunlight, and it is from here that I rise, once again patient and ready to embrace life's rockier moments.

***
To learn more about my adult life with SPD, read more of my blog, Coming to My Senses, and visit my website at www.rachel-schneider.com