Rachel S. Schneider

@rachel-s-schneider | contributor
Rachel S. Schneider, M.A, MHC is the author of Making Sense: A Guide to Sensory Issues and the blogger behind Coming to My Senses. She was diagnosed with SPD in 2010 at age 27 and since then has become an SPD advocate and pillar of the adult SPD community. Rachel lives in New York City with her husband and Handler, Josh Erich.

My Experiences as a New Parent With Sensory Processing Disorder

Half a year and a lifetime ago this week, our strong, clever, curious, gorgeous little daughter was born. I was at the time – and I still am – a mom who set out on the journey of parenthood knowing that I was wired differently. I have sensory processing disorder (SPD), a neurological condition that impacts the way my brain makes sense of sensory information. You might say I’m sensitive and quirky, often picky and rigid, and you’re absolutely right. I live with some special challenges. I’m also a wife, a daughter, a sister, and a friend. I’m an award-winning author and I’m an advocate for the SPD adult community. For the past six months, I’ve also been a mom with SPD. Clearly, I refuse to let a neurological difference be the reason I don’t get to follow at least some of my dreams. That being said, parenting with SPD isn’t for the faint-of-heart. While most of what my husband and I have collectively faced falls within the realm of typical new parent drama (baby won’t poop, baby won’t stop crying, baby keeps teething), my experiences of new motherhood, through a differently wired system, have made for an especially unique six months. Here’s what I’ve learned. 1. Parenthood is complex. Parenthood with SPD is also complex. For the most laid-back, unencumbered individual, parenthood is still a complicated proposition. Here, it urges you, this is a brand-new person with your eyes and your partner’s nose. Go and sort out how to keep them not only alive but thriving. They can’t tell you what they want or need yet, and oh yes, you just pushed them out from between your organs, but quickly, go and figure out how to parent them. And then imagine being the parent whose sensory system sometimes just shuts down from overload. Envision losing the already tenuous connection between your hands, your wrists, your body, and the outside world, and place your child – your heart beating loudly outside of your chest – in those disconnected hands. Try to see, through your eyes that sometimes just don’t process visual information correctly, their tiny chin dimple and the trickle of drool that needs wiping. Try to calmly change a diaper while making soothing vocal intonations as your baby shrieks and your senses overload. Try to swivel your baby carriage down a busy sidewalk with those same challenged eyes and ears and proprioceptive system while keeping your baby safe and upright. Don’t cry at the first stranger who surprises you from behind to complement one of the greatest loves of your life. Some days it’s especially weighty to tote around a growing baby and a lifelong neurological diagnosis. 2. Self-care is critical now more than ever. Back before our daughter arrived, my self-care routine was extensive. I rested for many hours a day. I soaked in a tub filled with lavender oil daily. I did Yoga Nidra and visualization techniques. I deep-breathed like it was my second job. These moments of self-care enabled me to stay above my intense anxiety (a secondary perk of SPD), and often gave me the calm I needed to face my sensory challenges. These days, my definition of self-care has changed. Closing my eyes for a half hour has become a precious gift. A deep breath or two before bedtime is now luxurious. I took a shower by candlelight a few weeks ago, and I swear it was like I’d spent the day at a spa. These moments, sadly sometimes few and far between, are pivotal to my well-being as a parent with SPD. It’s like what they tell you during airplane safety protocol presentations: you need to put on your oxygen mask first before helping anyone else. My time is limited, but I never regret carving out a few minutes torevitalize. The better rested I am, the better I feel, and the more I can fully engage with our girl. 3. We’ll still have meltdowns and shutdowns, and we’ll survive them. About a month ago, I found myself sprawled out across our bedroom floor, sobbing. I was under-slept and over-extended that day, and between the peek-a-boos, the assisted walking, the nursery rhymes, and the pained, wrenching whimper of a baby mid-teethe, I’d lost my poise. I felt the dark, heavy cry of a meltdown on my emotional horizon, so I handed our daughter to my husband, retreated to the dark, cool calm of our bedroom, and pressed my entire being against the floor as I began to sink into a full, tearful sensory meltdown. I emerged about a half hour later dazed and frayed, but alive and functional. Our daughter erupted into a wide smile as I walked back into her bedroom, none the wiser of my complete albeit temporary loss of composure. My husband, ever the Handler as we call him (he’s able to handle both me and my sensory needs like an expert), gave me a kiss, and we continued on with our evening. Meltdowns and shutdowns are just part of the SPD package – survivable even after becoming a parent. 4. People with SPD make amazing parents. People with SPD are often sensitive and intuitive. We care deeply about the human experience because we know all too well how it feels to be misunderstood, uncertain, and anxious about living in the skin we’ve been given. We’re open to differences because we, ourselves, are different. We’re often eager to be supportive, as the support and love from others have helped us get this far in our lives. We live in a world that isn’t built for us, and yet we can be creative enough to find ways to live well within our parameters. We’re some of the strongest people you’ll ever meet. Who wouldn’t want us for parents? 5. People with SPD are deserving of love and family. I know there’s always an underlying question in the SPD adult community of what do I deserve? Those of us whose diagnoses were delayed have often wasted many years feeling ashamed and guilty for our differences. In many cases, we’ve felt like burdens to our family and community purely because no one truly understood our needs, not even ourselves. Even after diagnosis, we may still habitually apologize for being who we are. It’s hard, then, to think that we’re worthy of basic human rights, like love… but my friends, we are. We deserve the things we want from our lives. We should stop punishing ourselves for how we’re wired. Our differences can’t keep us from finding our own, unique ways to meet our goals. I always knew I’d be a mother someday, but as our daughter’s due date grew close, I began worrying that I’d somehow let her down because of my sensory sensitivities. Listen. I may never be the mom who sews clothing in the theater wings while my daughter sings the lead in a school musical. I may never be the daredevil mom who picks her kids up from classes one day, pops them in the back of the car, and announces, surprise road trip amidst excited squeals. I suspect I’ll be a different mom. I’ll be the mom you confide your innermost secrets to because you know she’s not here to judge. I’ll be the mom who throws cupcake parties and is especially adept at a good movie-watching snuggle. Mostly, I’ll be the mom that is the most herself: open and honest, a fervent champion and cheerleader, a haven of safety in a world that never feels entirely safe to her. We want to hear your story. Become a Mighty contributor here . Image by contributor.

What It's Like Being Pregnant With Sensory Processing Disorder

You’ve read the title, so let’s make it official: I’m a woman with sensory processing disorder (SPD), and I am 12 weeks pregnant! For those of you who know me (and my urge to share as much of my sensory life as I can to educate and support others like me), this delightful turn of events was incredibly hard to keep secret. Just typing these words feels like the best exhale after the longest deep breath of my 33 years, so pardon me as I scream “Wahoo!” from this corner of the Peanut Gallery. As always, I have a ton to say about this life-changing moment in time. Pregnancy is an overwhelming premise for even the most “typical” of neurotypical women. Your body basically says to you: Peace out, girlfriend, I’ve got to go do something major right now that you have zero control over, so watch in awe as nausea washes over you, your senses go haywire and your abdomen swells up like ripe fruit. The change here is I’ve made the decision to open up my differently wired system to the from-scratch growth of a human being; a system that is perpetually haunted by the mysteries of a sensory world it doesn’t quite understand. I’m a pregnant woman with a lesser-known neurological condition. I’m with child and I’m hypersensitive to sound and sight. I’ve got a womb with a view (*snicker*), and I can’t connect my ever-changing body to the world around me. The funny thing is I’ve never been happier. In a life filled with so much difference, it’s a pure and unadulterated delight to delve deeply into something many neurotypical and neurodiverse women alike both experience during the course of their lifetime. Sure, other aspects of my life fall into the same category. I work and I relax. I’m married. I have friends and hobbies and likes and dislikes. But all of these typical things are unrelated to my body. I’m usually the one maneuvering through my sensory-based challenges to enjoy social time in my way, or the employee navigating the waters of accommodation to produce my best work. The physical aspects of these challenges are mine alone and frequently misunderstood outside of my community of like-wired individuals, family and close friends. The particular battery of sensations I experience within my differently wired brain can’t be experienced by anyone external to my skin. As a pregnant woman, I’m doing something women have done since the dawn of time. I can text any single one of my mom and mom-to-be friends about the bone-deep weariness and exhaustion of the first trimester, and they’ll respond with a message that shows they personally understand the events taking place within my abdomen. I’m temporarily part of a group that’s widely understood and accepted. They make special stretchy pants for people like us. They’ve written thousands upon thousands of books on the subject. I don’t have to be a pioneer in this particular world. And yet, in some ways, I do. As much as I’m a pregnant woman, I’m also a woman with SPD. It’s the balance between these two spheres that I’m working on as we speak — still finding my own sensory-friendly path through otherwise well-charted waters. A psychiatrist once asked me how I envisioned being a mother while having SPD, especially given my sensitivities and my often-pushed limitations. I answered with a few sentences about “people with disabilities, visible or otherwise, make amazingly sensitive parents too, especially since they contend with so many challenges in their lives,” but I came home to my husband feeling low and inadequate. In his wisdom, he said to me, “Listen, we can’t solve a problem we have yet to create” — m eaning hey, we’ll figure it out as we go. It’s the purpose of this life, I think: we take leaps and we weave our own parachutes as we soar. Today, I’m still a person with SPD. I’m in total awe of the little person growing fingers and toes inside of me. I don’t know what tomorrow will bring, or the next day, or the next; when I’ll get to be a part of an established group and when I’ll have to break new ground, as pregnant sensory women often do. Will my doctor be mindful of my sensory needs during delivery? Will I be able to stand the sound of my newborn crying? How will I manage the erratic bobs and weaves of a running toddler? Will my future-child understand my sensory needs…or perhaps even their own, should they be wired differently, too? We can’t solve a problem we have yet to create. What I do know is I have an incredibly patient husband and a loving extended network of supporters — from family to friends to a community of people with the same neurological differences as me. I personally take a village, so I can only assume my child will, too. Most of all, though, I have a drive to move forward and meet my future. It’s a place that’s starting to come into view through the brightest haze for the first time. There, flanked by my husband, I’ll hold a tiny hand we created together in the palm of my own. We’ll be a family. Let the sensory pieces fall where they may. Follow this journey on Coming To My Senses.

The One Thing You Should Never Say to Someone With Sensory Issues

If there’s one thing that I’ve learned living with a lesser-known, hidden neurological sensory disorder for 32 years (and advocating on behalf of others with this disorder for five, ever since I was diagnosed in 2010), it’s that many people ultimately mean well when they discuss your condition, even when their commentary suggests otherwise. I often repeat this statement over and over like an ancient yogic mantra when I post about the quirky and especially challenging ins-and-outs of life with sensory processing disorder (SPD) and wait for the engaging discussion to begin, because there’s one thing that stops me in my tracks and takes me aback. It doesn’t always happen when I blog or share tidbits of my sensory life. It’s the epitome of “meaning well,” funnily enough, the tethering together of experiences and emotions; the holding of hands across the electronic divide, and I know it’s bound to happen eventually, as much as it rubs me the wrong way every single time. It’s when someone with typical neurology reads about my sensory challenges and replies: “Me too.” Let me take a step back and qualify this by saying that we’re all sensory beings. Think of the agitated grandma who shakes her cane at street youths, telling them to keep the noise down. Think of the beach-goer who shields his eyes from the sun until he can push his Ray-Bans onto the bridge of his nose. Think of the little girl who refuses to eat her broccoli because it tastes yucky. As human beings, every single one of us is perpetually engaged with our senses. Our world is one based in sensation and perception, and most of us can move through it unscathed. We have our sensory preferences and dislikes, sure. Some of us live for the thump of the speakers at live concerts. Others wrap themselves in a cashmere scarf and curl up under a fluffy comforter. Many avoid crowds. The difference, though, is that for those of us with sensory issues, our “penchant” for cashmere or “desire” for a loud baseline or “dislike” of crowds isn’t merely a preference that can be turned on and off at will. We are wired so differently that our prime directive becomes something like rub your fingers across all soft things all the time in all places regardless of societal norms or social graces OR press your body against the speaker to feel every single pulse and ignore the bouncer who wants to toss you out of the concert venue OR stay the hell away from the undulating crowd and cover your ears and shut your eyes and wish upon all available stars in the sky to be anywhere but here. Hence “disorder.” Hence “differences.” Hence “disability.” Hence “condition.” In my sensory life, I live with (and respond to) many unusual needs. I fidget with tiny, handheld and fur-covered animal figurines all day because I find the input absolutely necessary to keep me calm and focused. I sometimes sit for hours in darkness because the very idea of a light makes me want to unzip my skin and hang it up on a coat rack. I lie on my back like a tipped-over turtle and cry my face off if I am surprised or feel overwhelmed. I lose the ability to process sound and sight and feel detached from my body if I take in too much sensory input, and I need someone to walk me back home until I can regain my processing abilities. You too? I didn’t think so. When a person with sensory issues tells you about a particular sensory eccentricity, remember that you’re not hearing the entire story because it’s complicated to paint the full picture of a scene wrought with sensory challenges. I pop bubble wrap before even unearthing the contents of a package also means because I am craving the tactile engagement and am desperately seeking this sort of input right now. I can’t stand the smell of raw meat also means because it is so foul to me that I find it painful and distracting to breathe in the scent, and it not only triggers other sensory sensitivities, it sends me into a shutdown. A sensory behavior never stands alone. It always emerges as part of a larger tapestry we call Living With a Differently Wired Brain. I know you mean well. I know you would never tell a person mid-seizure that you’ve been there too, merely describing that one time strobe lights made you feel uncomfortable (unless you are actually prone to seizure activity). You’d never say to someone with Parkinson’s disease that your hands tremor, even if your hands sometimes do shake when you sip coffee (unless you actually have the disease). These are neurological disorders, too, as much as they vary. When you tell a person with sensory issues (whether SPD, autism or Asperger’s) that you experience the same things as they do, I believe you inadvertently negate and invalidate their experiences. Mine included. So my neurotypical friends, what should you say instead of “me too”? It can be as simple as, “Thank you for sharing.” Speak words of support and encouragement about and to the sensory person. It’s hard to open up and be raw about something that’s had such a significant, personal impact on our lives, and yet, when we willingly discuss our sensory issues, we are making ourselves vulnerable. This is especially challenging for those of us who were diagnosed with our sensory issues later in life and spent many lonely decades feeling different and ashamed. We share our stories with you to educate you, to echo the experiences of your children, your friends, your partner, your neighbors, your coworkers and your relatives; those who are sensory and hiding in plain sight. We speak for those among our ranks who are too young to express what they’re experiencing and need a voice. We share our stories to remind one another within our community that we’re not alone. We explain the complexities of our differences so that we can help others who are just coming to their senses realize the unknown thing they’ve been coping with for years has a name. Personally, I tell my story to honor the little girl within me who didn’t know why she was so sensitive, particular and scared. I like thinking that somewhere back through the viscous haze of time, she feels the energy of me, her adult self, sidling up to her, putting her arm around her, and saying – quite appropriately, I might add – me too. (One final note: if your “me too” moment is something else – if it’s an awakening because of something you’ve read about sensory issues, if it’s an epiphany – an ah-hah moment, if it’s the very thing that explains some unknown something that you’ve lived with for decades, you know where to find me.) The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or illness, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines. Lead photo source: Thinkstock Images

5 Things I Want You to Know About Sensory Shutdowns

As a sensory processing disorder (SPD) advocate, people frequently ask me about sensory shutdowns, those neurological episodes in which sensory information becomes too overwhelming to tolerate and the system goes haywire. Let me start by saying that within my role in the SPD community, my mission is to share every single experience of my sensory life with anyone who will listen. I’m totally not shy. I use my training as a mental health counselor and my writing skills to evaluate and capture even the grimiest, buggiest twists and turns of a delayed-diagnosis sensory adulthood to explain every inch of SPD. And nothing is quite as grimy and buggy as sensory shutdowns. Here’s what I want you to know about these challenging, temporary events: 1. A shutdown is like having a frozen computer that needs a reboot. Imagine you’re multitasking online. You’re watching “Unbreakable Kimmy Schmidt” on Netflix on mute, playing Yo La Tengo’s latest album on Spotify, browsing BuzzFeed and posting a Facebook update about the hilarious cat video you have open on YouTube all at the same time. Suddenly, everything on your screen freezes because, well, it was all probably too much for your 5-year-old MacBook Pro to handle successfully. Interrupted and frustrated, you’re forced to restart. A sensory shutdown is when your brain stops being able to take in and make sense of sensory information. Much like your overworked laptop, there’s only so much a brain, especially a differently wired brain, can process all at once before freezing. Become oversaturated with too much input, and you may need a reboot as well. 2. Shutdowns can be both peaceful and terrifying. I’ve been told by some that their shutdowns are always peaceful, distancing, welcoming experiences that allow them to escape the ceaseless barrage of sounds, sights and movements, almost like donning an insular layer and feeling protected from a sharp winter wind. I’ve experienced a few of these shutdowns; it almost feels as if I am sleepy and just less present in the moment. My eyes become glassy and I stare into space until someone notices (usually my husband, who I call my “Handler”) and points out that I have floated away somewhere into the great unknown. Like a drifting balloon, he always manages to tug my string and pull me back into reality. Others experience shutdowns that teeter on the edge of panic attacks. They’re vicious, jarring shutdowns that pulse with detachment and anxiety. These are the kind I have most frequently. In my experience, one moment I am handling my sensory environment with at least a small degree of grace, and the next I watch as my functional visual field collapses. I go from seeing full objects to just their parts. I hear every excruciating nuance of sound from all directions, and I cannot find my body in space. I feel lost, confused and no longer present in my skin or in the world. Whereas the first type of shutdown is like a protective distancing of the sensory self from the environment, this second type is a sharp dissection of the self from the environment. I like to think that shutdowns happen in degrees like this, and some are just more intense than others. 3. Shutdowns are not meltdowns. Hear me clearly on this one. So many people like to mix these two types of episodes up, and although both are triggered by our experiences with the sensory world, shutdowns and meltdowns are not the same thing. A meltdown is an intense, emotional reaction to sensory input and related, unplanned changes to preset expectations about the sensory environment. It comes on like a tornado of tears and anger and passes through just as quickly, not too dissimilar from a childhood tantrum, although the cause in this case is neurological. I’ve melted down in the face of intense sound, but I’ve also melted down to unexpected changes relating to my sensory environment, like an unanticipated shift in the location or timing of an upcoming event. Our experiences with sensory input are such that the more information we have about an upcoming sensory challenge, the better we’re able to cope. Structure and familiarity are friends to people with sensory issues both on and off the autism spectrum. And for those of us with SPD, shifts in the structure related to sensory input — whether as part of our familiar routine or an unfamiliar event or excursion — are incredibly uncomfortable. Add sensory concerns to this shift, and it’s no surprise we crumble into a heap of tears. 4. Support during a shutdown can help or hinder. When I am in the throes of a massive, soul-sucking, detaching shutdown, the most pivotal thing someone can do for me is help me find my way to a quiet, dark, safe place. In this moment, I can’t effectively make sense of what I’m seeing, hearing, touching or coming into contact with, and so a deep squeeze of my hand and a confident, trustworthy companion with a plan of action to take me out of the situation makes this temporary retreat feel less scary and more controlled. Some prefer kind, encouraging words, but some do not. Some want to be touched and some do not. Once again, our sensory experiences vary, and so the best way to help a loved one during a shutdown is to know what works best for them. Pick a time outside of a shutdown when they seem calm and regulated and ask them how you can help the next time a shutdown crops up. 5. Shutdowns are survivable. Shutdowns have been the bane of my existence for years. Before I came to my senses, I spent all of my time fearing these episodes and making plans to avoid them, whatever the cost. Had I understood them, I would have known that they were ultimately transitory and actually benign. As uncomfortable and terrifying as they are in the moment, a shutdown can’t kill you. It can’t hurt your family and friends. It’s a signal from your brain to you that there’s just a bit too much going on sensory-wise at the moment and that you need to switch gears. You are actually safe in your body, regardless of how raw and exposed you feel. You will survive. Follow this blog on Coming to My Senses. Lead photo source: Thinkstock Images

The Most Valuable Tool I Have as an Adult With Sensory Processing Disorder

If you asked me which tool is the most valuable to me as an adult with sensory processing disorder (SPD), I’d say without a single moment of hesitation: my husband. This is saying a lot. I’m a woman known for her deep, inane dedication to her furry band of finger-friendly fidget friends (yes, they have names and distinct personalities). I feel completely unclothed and unfettered without my trusty Wilbarger brush by my side, cloaked in the inconspicuous wraps of a floral makeup pouch. As a psychotherapist, I’m a huge proponent of deep breathing and visualization techniques, and I frequently slip away from the midst of large, raucous social gatherings to collect my breath and thoughts. I refuse to leave the house without a pair of blue-tinted buddy-cop-comedy sunglasses tucked into my purse. I’m clearly a quirky and interesting person. And yet, in a single adult-sized male, fringed with a surprisingly robust rust-toned beard and kind eyes, exists the most comprehensive sensory tool in my immediate sphere. My husband is a squeeze-machine-meets-service-dog with patient, strong arms and fingers that have narrowly avoided the puncture of my proprioception-hungry teeth more often than I care to admit. He’s a warning alarm and a mirror when my eyes glaze over and a secure escort when my field of vision turns to haphazard streaks of sharp, incomprehensible brightness and sounds become meaningless. He’s never, ever judgmental about my SPD needs. He slices. He dices. He makes me want to write an infomercial. Together, my husband and I jokingly refer to him as my expert handler, like a wrangler who keeps a pacing tiger at bay or a trainer who soothes even the most temperamental boa constrictor – except instead of taming roving wildlife, he tends to me and my sometimes (OK, frequently) stubborn neurology. We’d been dating for just under a year when I met with an occupational therapist for the first time and received my diagnosis. It might have been the deep pressure brush the OT pressed into the palm of my hand or the tangled bucket of small toys she proffered – perhaps it was learning that my unyielding urge to flee the flash and thump and undulation of busy spaces had a new name – but that night, I was rapturously giddy. My husband, then my boyfriend, found me sprawled on my red couch, mid-giggle-fit, completely intoxicated with relief as the weight of 28 years of self-doubt and strangeness began its slow drain from my system. He learned that evening how to brush my back and help me quell the jagged surge of residual sensory input. Two months later, he would kneel before the very same couch and present me with an engagement ring. SPD be damned. In time, he’d see me at my best: I’d stride across the stage, solo, to accept my Master’s degree, beaming, momentarily unhindered by the applauding crowd gathered in the echoed chapel. He’d wave from the middle row, flanked by my ever-supportive family. We’d all retire afterward to the celebration thrown by the University. I’d bend the ear of my favorite professors and join my peers in countless photographs, my smile spread ear-to-ear. He’d see me at my worst: My already overly-alert and in-tune body suddenly thrust into sensory overdrive as I struggled with what we now realize was a vitamin deficiency paired with a particular food sensitivity. (Leave it to an SPDer to manage such perpendicular, yet simultaneous, internal health feats.) For weeks, my heart was a propeller; my flesh felt flush with the ceaseless, tiny march of invisible wingless insects; my eyes stung and swelled with tears; and I startled with every punishing word that emanated from our television. I could not bring myself to the peaceful doorstep of sleep. It felt as if my entire body was on fire. My husband watched at first, powerless, unsure of the best tactic to take in the face of my restless writhing and acute sensitivity. I don’t know what inspired him one night, but I remember peering up through a thick fog of malaise to see him hovering above me, and then he leaned downward and pressed his entire body, from head to toe, against mine. My handler, this wacky, clever man, had transformed himself into a powerful human weighted blanket. My body fought back against his frame for but an instant before it sunk into a temporary calm. It felt like the first gasp of crisp air after coughing up pool water. People say love is this, love is that. Let me tell you: love is the drape of skin and bones, of one body across another, when nothing else will suffice. I’m not saying life is perfect. Nothing is further from the truth. As an adult with SPD, life is more of a three-legged race in which all tied limbs belong to you. It’s an invisible birthday obstacle course lacking in layered party cake. It’s like living with a shy Yeti who insists on preparing every meal from scratch in your pajamas. SPD is nonsensical and moody, elusive and effusive. It’s a complex beast that sometimes defies even our last elusive bastions of self-worth. It’s in these moments that we all must set aside ego and questions of personal ability and unfathomable strength. We must return to the schoolyards of our minds and touch base. We must grab the hand of someone who helps us makes space for our three-legged Yetis – whether this is a partner or parent, an old friend or the soft-spoken neighbor. This need knows no age boundaries. I’ve had the great honor to engage with numerous adults with SPD, and each person has expressed to me how crucial a deep, trusting relationship is to their sense-of-self and well-being in this sometimes haphazard world of shrill sirens, foul smells and socks with intolerable seams. I’m thankful for the sensory pleasures in this life I’m living. I love the smooth glide of softened stick butter between wooden spoon and ceramic bowl as I prepare a fresh batch of chocolate chip cookies — the smell as dough becomes dessert in the oven. I relish the physical stability I feel with each stride of my morning elliptical workout routine and the spring of my feet against a trampoline. I’m delighted by my father’s lively laugh, my mother’s gentle embrace and the genuine joy in my sister’s voice when I pick up the phone and say hello. I savor the feel of warm, lavender-perfumed bathwater against my form. I’d be lying, though, if I didn’t say I was most thankful for my husband, the stubborn, silly, patient man – my judge-less and willing handler – and his intrinsic ability to help me navigate through my SPD life. Ultimately, it’s nothing I can’t handle alone, but it sure is nice to have company. This post originally appeared in the spring 2014 issue of Sensory Focus Magazine. Want to celebrate the human spirit? Like The Mighty on Facebook . And sign up for what we hope will be your favorite thing to read at night .

The Day I Found Out I Have Sensory Processing Disorder

It was a humid August afternoon in 2010 when I learned that I had Sensory Processing Disorder (SPD). I sat like a giantess on a small stool spilling over a tiny child’s drawing table facing my new occupational therapist. I loved everything about her office – the soothing blue paint on the walls, the tangle of equipment, even the soap-shaped deep-pressure brush she pressed into the palm of my hand. Hey babycakes, I thought to myself, there’s a place for you after all! This positive speak surprised me. It was in direct opposition to the way I’d treated myself most of my life when it came to my differences. While I was (am) bright and bubbly on the surface – always quick to crack an absurd, witty joke or let a wide smile spread across my face – my inner monologue was filled with hate and fear. Stop being such a weirdo and just do it already, I’d think as I struggled to leave a safe space and face the cacophonous, blinding, undulating streets of New York City. You’re useless, you can’t handle anything, I’d ruminate, slumped down and hunched in tears as I missed yet another family outing, you embarrass me, you are an embarrassment to everyone. And then there was the speaking I did about and to my related anxiety — the pleading, the desperation. Please let me get through this without losing it, I’d whisper as I transferred from bus to subway to train on the way to work. Please leave me alone for once. I can’t live like this. On the day of my diagnosis, I had this sense that my SPD was finite, that the nameless burden I’d been carrying around for 27 years would slip from my shoulders, like a cape to the ground, and I’d feel lighter, freer. I didn’t have to be scared anymore. I didn’t have to hate the golden-brown-haired woman with kind, green eyes who stared back at me in the mirror. She was aces in my book; she finally had a name for her foibles. It was about a month into my diagnosis that this new image of perfection was shattered. It didn’t matter where I was standing or what I was trying to do, who was flanking me or the time of day – I had a sudden sensory overload and went into the all-too-familiar shutdown mode. My body detached from my surroundings and I felt scared and ashamed. Where’s your special diagnosis now?! I screamed from within, W ho cares what it’s called if you can’t do a single thing to make it go away?! I knew the truth – I wasn’t a young child and my brain wouldn’t rewire quite the same way as a child’s might, if at all. My negative internal voice went from punishing to bullying. Now, when I “failed” at an activity, I essentially “failed” twice — because I was once incapable and because I was still incapable, in spite of having the right diagnosis. My confidence plummeted and my anxiety heightened. In psychotherapy, I worked on reframing my thoughts – taking them, turning them on their head and looking at them from a new angle. There are so many things I still can’t do! I’d say aloud during a session. Ah, my therapist would say, but there are so many things you can do. I’d continue. It’s so scary though when I can’t process the sensory world around me. Scary, yes, she’d respond, but you can’t be hurt, not in any significant way. In time, I internalized this new voice – this gentle, positive position on my status in the world. I allowed myself to believe in the possibility that my perceptions could change how I feel. I worked on acceptance. No, my SPD wouldn’t go away. I’d probably live with the agitation and discomfort, the deep and inexplicable internal pain in the face of fluorescent lights and falsetto voices for the rest of my life, but I’d remove my own internal stigma to face personal sensory challenges and celebrate my most complex achievements – all without passing harsh judgment on myself and my neurology. If I was going to live this sensory life, I realized I had to make peace with who I really was, SPD and all. Maybe it’s not such a bad thing to be so sensitive, I thought to myself, to notice things that others don’t, to read people and situations without words, to feel deeply and to care deeply. Maybe I can cut myself some slack. I was owed that much. If I could go back to the day of my diagnosis, I’d tell myself to be patient – that in time, I really will learn to love who I am regardless of my diagnosis – and sometimes even especially because of my diagnosis. After all, I wouldn’t be me without my SPD. For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to community@themighty.com. Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio. Want to end the stigma around disability? Like us on Facebook . And sign up for what we hope will be your favorite thing to read at night .

To the Man Who Made Me Proud To Be an Adult With a Disorder

Sensory Processing Disorder was not a phrase I’d ever heard tossed casually into conversation between sips of merlot at a cocktail party. How about the weather we’re having this month? Where are you working these days? How about that misunderstood, silent neurological disability you’re battling? So when I was diagnosed with SPD back in 2010 at the age of 27, after decades of misdiagnosis, I found myself adrift, thankful that my lifetime of difficulties — those picky quirks and particular oddities that made me rigid and anxious — were more than just this New Yorker’s penchant for personal perfection — and yet alone in the sphere of a new diagnosis, one that a quick Google search revealed was meant for the toddling, drooling set and not for a grown woman in her adult life. I vacillated between the two extremes at the time — the relief of knowing my struggles had a name and the loneliness of (seemingly) being a sole traveler along a new path. In free moments, between learning how to properly employ the Wilbarger Deep Pressure and Proprioceptive Technique (my favorite sensory tool!) and starting my Master’s program in mental health counseling (a result of my inner struggles), I scoured the Internet for anything I could salvage and use on my journey. Most of the articles, books and blogs I came across were written for parents whose children had SPD. Although it was heartwarming to see I was in good company when it came to fluorescent lighting and haphazard sound-causing chaos and confusion, I still felt different. No one is more different than an adult with SPD. Growing up, we were called “sensitive” and “unusual” by teachers and peers, and we were often misunderstood and mocked when we expressed our unique needs. We didn’t have the words to explain we felt disconnected from ourselves and our surroundings, or to convey just how raw and scared and drained we were by the end of the day. We couldn’t explain why a soft touch on the shoulder from behind would send us into a tailspin of tears or why the smell or taste of a particular food would make us recoil in discomfort. After my diagnosis, I thought I’d immediately feel connected to a larger whole. After all, someone who is diagnosed with MS or Lupus or anything with a sponsored run-walk is immediately plugged in to a greater community, I thought. Support groups allow for catharsis and acceptance, awareness ribbons are attached to each lapel. SPD explained everything I’d ever experienced. Where was my community? Where were my people? And then I met Dan Travis, a fellow SPD adult. If SPD was a spiritual path, Dan would have been my prophet, my sage. I call him my mentor. I found his website for adults with SPD two weeks after my diagnosis, and I immediately sent him an email like a frenetic Morse code message. “S.O.S. SPDer in need of help. Send provisions, wisdom and unyielding acceptance.” Dan was – still is – the gold standard in human beings — the most warm and welcoming person I’ve ever met. He responded to my first email quickly, and within days, I was blissfully inundated with information and answers. I didn’t have to make excuses about my weird behavior to Dan, and I didn’t have to suppress my litany of questions and concerns. He gracefully understood each anecdote and addressed every query. He laughed with me when I described how I achieved my latest bruise and consoled me when I asked, over and over, why it had taken 27 years for me to be properly diagnosed. He taught me tricks to help lessen my symptoms and recommended tools to support me as I struggled. He once wrote: Rachel, you’ve had a very rough go at things, but you will make it though and you will thrive. I can tell.  I am simply amazed by you and your abilities. I feel like I’ve met someone who shares my passion and focus… I really have been waiting to hear from someone who is as active and caring as you are for the SPD cause. Remember that I’m rooting for you in your recovery and therapy. I’m proud of your accomplishments every step of the way. So Dan, thank you for your mentorship and friendship, your kindness and encouragement. You showed me what it meant to be a functioning SPD adult, and because of you, I’m now a fervent advocate and educator too. Because I met you, I’m proud to have SPD. Each time an SPD newbie sends me a message, I think of how you reached out your hand to pull me to safety. It’s my mission to always return the favor. For all of November, The Mighty is celebrating the people we don’t thank enough. If you’d like to participate, please submit a thank you note along with a photo and 1-2 sentence bio to community@themighty.com . Be Mighty. Like us on Facebook.