Adults and SPD

Please Turn Down Your Radio

Cwalker — Tue, 17 Dec 2019 23:42:49 +0000

Please Turn Down Your Radio Cwalker Tue, 12/17/2019 - 23:42

On the way to work, I ask a girl on the train to turn down her iPhone. Later, at a meeting, I ask a man to stop clicking his pen. Before the meeting ends, I’ve asked another person if he’d stop tapping his keys on the table. Next day, I’m browsing in a bookstore and find myself asking the manager if he’d please lower the music. That evening, I enter a restaurant with friends and ask for a table far away from waiters whizzing by. As I check the menu, I pray they won’t play music that throbs and pulsates and invades and dominates. That’s because I have a condition known as Sensory Over-Responsivity. I’ve had it all my life, and it’s complicated my relationship with nearly everyone—my siblings, my neighbors, my employers and my lovers.

Sensory Over-Reactivity is a syndrome defined as “having a tendency to react negatively, or with alarm, to sensory input which is generally considered harmless or non-irritating.” It’s a condition now recognized by therapists, but it’s not considered a disorder by the American Psychiatric Association. That leaves a person like me on shaky ground: my heightened sensitivities are classified sufficiently to warrant the title of “Sensory Over-Responsivity,” but they lack the dignity of a formal disorder. I’ll now abbreviate that title and refer to those affected by this condition as Sensory Over-Responders, or SORs.

This essay is my attempt to illustrate how I’ve gone through life dealing with my exaggerated reactions to light, sound, smell, taste and touch—reactions that other people regard as excessive, unreasonable, and even ridiculous. After all, real men are expected to tolerate minor irritations without complaining. So asking people not to whistle when I’m trying to read, or to stop cracking their gum, or to stop drumming their fingers on the table, or to please lower their voice, makes a SOR guy like me seem too demanding. Or too touchy. Or too fussy. Or too something. The heightened sensitivities that lead me to ask others to adjust their behavior strike them as unnecessary and even downright prissy. It’s no fun being a man who needs to ask another man to stop tapping his keys on the table. He’s probably never had someone ask that of him, so my request, no matter how courteously it’s expressed, seems odd and mildly annoying.

I want no reader feeling sorry for me—I’m essentially a very lucky person—but I’ll buy a new shirt and spend a good half hour trying to unravel the very tight stitching that binds the label to the neckline. I bought a special tool from a fabric store that can dig into the extraordinarily fierce threads to remove the damned thing. Otherwise, I’d feel that label torturing my neck anytime I wore that shirt; I wouldn’t be able to ignore the sensation of it against my skin.

How can I convey the intensity of feeling caused by that neck label? Here’s a way: imagine you’re working on a project when suddenly, somewhere in your neighborhood, a car horn gets stuck and keeps blaring. You can still do your work, but you’re so overwhelmed by the blare of the horn that your energies are now divided because your mind is also “working” to cope with the intrusive noise. You might even find yourself getting angry as the noise continues to wreck your concentration, and that anger usurps even more of your energy. SOR people like me just can’t ignore a neck label. Its intrusiveness is so annoying, its texture so abrasive, that I’d have to remove it to wear the new shirt.

When I was a kid at school, I’d place a wad of cotton between the label and my neck or else I couldn’t concentrate on my classwork. But boys in school avoid fussing openly about the abrasiveness of a mere neck label. Complaints of that sort strike other kids as ridiculous, and you’d likely get teased about your problem. Because boys of any age, properly headed toward manhood, are expected to endure minor irritations, and complaining suggests weakness.

Let’s stay in school a little longer. The classrooms of my suburban youth were lit with bright florescent bulbs, and occasionally one of those long, tubular bulbs would do something funny. When a connection was loose, they’d flicker and buzz, and the light would be uneven. Little eight-year-old me, undiagnosed with a super sensitivity I couldn’t understand, would cringe under those flickering lights and find myself unable to ignore the buzz or the flicker. And my classwork suffered from such distractions.

These sounds and motions grabbed my attention—overtaking it like a stormtrooper—leaving me very likely to lose my place, to forget, to not follow directions, and to then feel humiliated for failing to keep up with instruction, especially when my teacher scolded me in front of my classmates: Whaddya mean you don’t understand? I just explained that to the class. Weren’t you listening again, Johnny? Why don’t you pay attention?

Here’s another situation I encountered: the chairs in those schoolrooms had horizontal bars that held the back of the chair together. Now and then, some boy seated behind me would rest his feet against that horizontal bar and—you’ll find this hard to believe—I could “feel” his feet on my chair, as strongly as if his feet were exuding his very vitality, and that vitality was impossible to ignore. I felt invaded and imploded, and felt compelled to ask the boy to take his feet off my chair—a request that usually provoked a frown and a snarky reply.

I’ve never before revealed this problem to anyone, as I’m sure it must sound utterly silly. My feeling of being invaded by the very vitality of the boy behind me would be considered entirely imaginary. It might even suggest some underlying pathology. But if I avoid disclosing and describing the ferocious impact of other people’s closeness, I do myself and my readers the disservice of hiding an important component of SOR. Unwanted closeness—even the pressure of feet against a chair—can feel enormously invasive and very hard to ignore.

Here’s another way to suggest how it feels: imagine yourself reading something that engrosses you—this very essay, let’s say—and suddenly you become aware of a scream coming from somewhere, and that scream abruptly grabs your attention. It alarms you, expanding inside you like an airbag, blotting out everything else in your awareness. And even though you know the scream may be none of your business, the alarm you experience still rings inside you even after the scream has stopped.

Now imagine me in that classroom. The moment a boy would put his feet against my chair, my sense of alarm—my feeling of being invaded and overtaken—escalated inside me like a scream, a scream that functioned without sound but nevertheless felt as alarming and as impossible to ignore as the sound of a real scream.

That’s how vulnerable you feel when your sensory radar is stuck in high gear, when you live in the world out-foxed by the violence of your own nervous system. I was that boy in the classroom who forgot his assignments, lost his homework, misplaced his notebook, shielded his eyes from overhead lighting, and got distracted by the slightest irregular movement. It could have been a paper near an open window that fluttered from the breeze, or because the breeze made the window shade bang against the wall. I was that kid who always looked tense and confused, tired easily, and was always asking to use the bathroom.

You’d think the bathroom was a place I could finally relax and release. Yet with other boys milling around, and mirror reflections setting me crazy, I couldn’t stand at the urinal and hope to let go. I needed to be alone in a stall to release my water, but it had nothing to do with modesty, or with feeling squeamish about exposing my body part. I needed privacy not to avoid the eyes of others, but to shield myself from the overwhelming intrusiveness of kids moving around me, creating an awareness so vivid that I became paralyzed, like a deer on a country road at night stunned by the headlights of an oncoming car. So despite my uncomfortably full bladder, all the musculature associated with urination became blocked—an immediate muscular paralysis caused by feeling overwhelmed. It’s yet another instance of feeling defeated by—of being defeated by—a nervous system that’s tuned up way too high.

Touch is an especially complicated issue for SORs. I had a lover once who said that making love to me was like trying to play music on a fragile violin. I was jumpy, tense and demanding. Do it this way; not that way. Do that slower, please—but only over here, never over there. Ow! That’s too strong! Excuse me a minute, willya? I gotta pee. And how about turning up the heat a little. Thanks. I’ll be right back.

My freezing hands and my freezing feet resulted from tension that constricted my bloodstream, making the tip of my nose and the edges of my ears feel like ice. So now, before I make love, I do a little run to warm up my body and get my senses relaxed. I run to heat up my cold skin, but I also do it for my partner because—let’s face it—it’s no fun making love to a polar bear.

Years ago, I went to a therapist who specialized in biofeedback. One day, the therapist blindfolded me and covered my ears to block out all visual and auditory stimuli while I was wired to a monitor. But before he began the procedure, Marvin, who sat way across the room, crossed his legs to be more comfortable—a gesture I could neither see nor hear. Yet nevertheless, the needle on the monitor jumped. He was astounded that I was so exquisitely sensitive to a movement so far away and so silent. However, the needle had jerked way up, so apparently my sensory radar could detect it. I recall that incident as remarkable because we couldn’t understand how it could happen. But I also consider it unremarkable—and even reassuring—because it provided a kind of “scientific evidence” for the exaggerated sensitivities that have plagued me all my life.

I was born in January, so for my tenth birthday, my mother gave me a ring featuring my birthstone, a garnet. But I wore it only two days. I loved the deep red of the stone, but I found myself unable to ignore the ring once placed on my finger. I was constantly touching it, rearranging it, fidgeting with it. I soon realized I just couldn’t tolerate the feel of it against my skin. So I took it off and never wore it again. To this day, I cannot stand jewelry against my skin.

I’ve discovered rings at flea markets that I’d love to wear, with designs that would truly express my personality. But when I’d put them on my finger, I knew it was hopeless.

When you’re a boy who gets shamed for reacting to sensations that adults believe are “wrong” for boys to gripe about, you grow up with two choices: you can either voice your complaints and deal with the negative reactions your provoke, or you can suffer silently, enduring the discomfort you’re not supposed to be experiencing. If you share your bedroom with a brother, and you grumble about his habit of whistling while you’re trying to study, (so you can barely concentrate), or if you’re unable to ignore it when your sister picks her cuticles at the dinner table, (a repetitive action that would drive me nuts), you irritate your siblings, and the bickering that ensues provokes your parents. You’re regarded as the one who’s created the friction. You’re considered the spoiled perfectionist with the ridiculous demands. Why are you so fussy? Why can’t you be more like your brother?

Later on in life, you’re the employee who’s upsetting office procedures by complaining about a radio you find distracting. I once worked in a setting where a bookkeeper liked to listen to “Talk Radio” when she worked. I couldn’t imagine how anyone could do accounting with non-stop chatter spewing from her radio. When I asked her if she’d consider using earphones, she claimed she couldn’t do her work that way. When I asked her to turn down the volume, she cooperated at first. But it wasn’t long before she sneaked the volume up higher. When I asked her to please turn it down lower, she responded with an answer I’ve heard many times in life: You’re the only one who’s complaining. Maybe so, but that remark implies a judgment that I have no right to ask for things that I—and I alone—might benefit from.

Because of that radio, and for other distracting sounds around my office, I applied for a # 504 Accommodation, a concession an employer can make for a worker who can provide evidence that he needs a specific work accommodation (and not merely that he wants that accommodation). To support my case, I had to submit substantial medical evidence of a neurological deficiency. It took weeks of effort, and considerable cost, to substantiate a case for consideration, and until I won my case, I had to endure that Talk Radio. They finally conceded to have my office door soundproofed at company expense.

But I’ve since come to learn that the very sounds and movements that tend to derail my concentration are, ironically, the very sounds and movements that other people seem to need to maintain their concentration. My high school students, living in homes where a television is constantly playing, said they needed the sound of the TV to do their homework. They got so used to background noise that they’d actually come to require it.

And during test time in the classroom, when strict silence must prevail, I noticed that some students twitched and jerked their bodies. I don’t believe it was the difficult test questions that provoked these behaviors. I imagine it was their bodies’ unconscious response to a silence and a stillness that might reign nowhere else in their lives. These boys bounced their legs or chewed gum or drummed pencils on their desks. Such repetitive movements apparently helped them achieve and maintain focus, but were the very motions that often derailed other students’ focus.

The same paradox exists in the workplace: one worker’s concentration can get disrupted by the very music that fortifies and maintains another worker’s concentration. And here’s where ethical issues show up. For whose preferences should be given priority when you want music and I want silence? Or perhaps we should ask, when you need music and I need silence? Unfortunately, even when ethics are considered, the needs of SOR people like me get an unfair assessment. Whether it’s siblings bickering in the home or adults bickering in the workplace, the preferences of someone whose requests are considered excessive are likely to get rejected. They’re judged as selfish, unreasonable demands that seem childish and outrageous. The solution for ending the bickering is that the majority get their way, especially when the complainer is unanimously overruled.

So you go through life uncertain of what you have a right to ask of others. What’s considered reasonable to ask of family members when they’ve already scolded you with When will you grow up and stop fussing? And what’s acceptable to ask of co-workers when your supervisor has already suggested that You’re the problem here, Mister. Last week it was the cold air coming through your vent, and today it’s the bookkeeper’s Talk Radio. This is an office, my friend. It’s not a hospital. Y’understand? And what’s okay to ask of passengers on public transportation when you ask them to lower their radios, when you were hoping to ride in enough quiet to read a magazine or do a crossword puzzle? Because the response you’re likely to hear is What’s your problem, Man? Chill out, willya?

I can’t offer an unbiased solution for these encounters, but I’ll reveal a crafty maneuver I’m a little reluctant to confess: I’ve sometimes pretended to be more handicapped than I really am. I’ll put a quiver in my voice or a limp in my walk when I assume that’s the only way I’m likely to get the consideration I believe I’m entitled to. But—whoa, hold it—what right do I have to deceive people by pretending to be mildly impaired? Isn’t it unfair to manipulate people to try to get your way? Maybe so, but I pretend only at those times when I truly need to be accommodated, and only in those instances when I think I’ll be turned down unless I stir up “sympathy” for my condition.

It’s no fun paying an exorbitant price for a theatre ticket and then get distracted during the play by the light shining off someone’s cellphone. It’s also disconcerting to lose my focus because another audience member is “flipping” the pages of her program with her fingers, not realizing she’s teasing my attention away from the stage. Theatre folk who do these things aren’t inconsiderate bimbos. They may simply not realize how they’re distracting other people.

These days, it’s likely that before the curtain rises on a play, an announcement is made asking people to silence their cellphones, and even to open up their noisy candy wrappers right away, so the crinkle of candy wrapping doesn’t distract anyone later. I wish they’d also ask people not to light up the screens of their iPhones during the show. Any light, especially if it’s the only light in an otherwise dark theatre, will derail someone’s attention. I’ve spent the remainder of many a performance with one hand held against the side of my face to block out either the light from someone’s phone or the repetitive movements of someone’s arm or leg. I might ask them in a pleasant, courteous voice to turn off their screen or to stop fidgeting, but I’m not above pretending to be frail if that’s my best chance of getting cooperation. Unethical? Maybe so.

But consider this: when you see a man walking with a cane, or a woman in a wheelchair, or a person accompanied by a Seeing-Eye dog, their conditions—their limitations—are clearly visible. So your inclination to accommodate them is activated right away. However, while the limitations of SORs are far less severe, we go through life with no devices that would trigger the empathy of people we encounter. We cope with internal conditions. So when I find my capacity to concentrate disrupted by someone’s behavior, whether it’s a guy’s loud talking on a bus or an audience member’s unconscious flipping of her program, I believe I have a right to dramatize my discomfort or else I might not get the consideration I truly need. I cope with my condition the best I can, and if I discover I have to bend the rules a little to get through the day, I allow myself to bend those rules.

I offer two reasons. First, I’ve normally been a thoughtful, compassionate guy in my encounters with strangers—even in my childhood—so I feel I have the right to ask for what I need back from them. After all, they cannot “see” my hypersensitivities, so they cannot appreciate how much I need their cooperation. Second, if our roles in life were reversed—if they were persons with SOR issues and I were the stranger from whom they needed consideration—I’d sooner grant their requests than deny them, even if they seemed unnecessary. (I might regard them as unnecessary, and grumble about it privately, but I’d cooperate nevertheless).

SORs simply cannot ignore a repeating motion or sound. True, everyone’s concentration gets derailed by the incessant barking of a neighborhood dog. But even the drip, drip, drip, drip, drip of a bathroom faucet can rile me to the point that I’ll get out of bed to squeeze the faucets tighter. If that doesn’t stop the drip, I’ll get out of bed again to stuff a rag up the spout. In fact, whenever I hope to sleep, whether it’s an afternoon nap or when settling in for the night, I always turn on a big fan and twist the dial up to HIGH. It’s not the breeze I’m after; it’s the whirr of the fan that I need for sleeping. The sound of the whirring blocks out, or at least muffles, the household noises or outside sounds that would keep me awake, or that might awaken me after I’ve fallen asleep.

Some of us feel a need to sweet talk others into behaving in ways that are less strident to our senses. But you live and you learn. You compromise and you adapt. You ask for cooperation, and you learn which ways of asking work better than others. You learn never to have a scold in your voice when you hope to change what someone’s doing. You learn that just because someone stops tapping when you’ve asked him not to, you’ll return to your work with the lingering worry that he might eventually resume his tapping. You worry because you’ve learned that tapping, or drumming fingers, or clicking a pen, are unconscious habits that might resume whenever that person’s nervous system “needs” sound or movement to maintain his concentration. You learn ways to be patient with strangers and ways to accept that you’re not always going to get what you need. You learn to endure.

Because I’ve traveled through life jabbed by noise, jolted by light, sickened by smell and startled by touch, I carry around devices that help shield me from those frights—a blindfold to protect my eyes from the strident western light on a long train ride, a pair of gloves (even in summer) to protect my fingers from the frigid air conditioning on that train ride, and always a nail clipper so I can snip off a hangnail I just can’t ignore. I buy those foam things you can push in your ears to block out sound, but often they’re not strong enough to keep out louder noises that rankle me.

I found a great device in a rifle shop: big “earmuffs” that shooters wear when they hunt so their ears are protected against the loud blast of their rifle shots. Each ear gets covered with a cushioned plastic dome that effectively reduces both the volume and the impact of any sound. I carry a pair whenever I’m going to any theatrical performance where the accompanying music might be too loud or too shrill. Or whenever I plan to be riding on a bus or a train or a plane.

Why, though, are we so affected by sensations that others tolerate more easily? Try this: image yourself standing alone before a placid lake. You pick up a stone and toss it over the water. Then you hear that plop as it strikes the surface. The sound occurs, and then it ends. It’s over, and that’s that. But notice what happens after the stone strikes. You see concentric circles beginning to form, emanating outward from the point of impact. Watch as these circles continue—moment by moment—to affect the entire surface of the lake. One little stone, one little plop. And yet it can seem like minutes until the lake returns to its former stillness. As big a lake as it is, it can’t ignore the tiny plop, and it keeps on reacting with ever-expanding reverberations that reach far across its surface.

As these extended reflexes unfold in us, we’re inattentive, unable to listen, and confounded. Friends and lovers may find it too hard to tolerate our reactions and may eventually pull away, leaving us feeling friendless and hungry for affection. This is an ongoing challenge for SORs—balancing the give-and-take in friendships and close relationships while trying to get enough accommodation for our misunderstood needs without being too demanding.

Yet guys with my condition endure even greater discomforts than everyday neighborhood annoyances. Certainly, everyone gets distracted and irritated by unwanted music. But when you cope with SOR, you live in what one researcher calls a storm of sensation—an overwhelming influx of stimuli that utterly overtakes your consciousness. Your body tightens, your nerves freeze up, and your personality gets distorted by the invasion. Think of how a turtle behaves when he feels threatened: his head and his feet pull in under his shell, and then he looks like nothing more than a rock. SORs can feel their true selves disappear in the company of others when they get flooded with noise or overcome by frenetic activity. Their ability to stay focused and affable is severely compromised when so much of their personal energy is devoted to coping with sensations that overwhelm them.

And the cost is great: their very life space shrinks because they’ve become encased in defensive postures that make them feel numb. They’ve disappeared inside like frightened turtles. They’ve been jolted away from their here-and-now identity, so they end up feeling phony, like impersonations of themselves. Whenever their senses are freaked into panic, they’re wrenched away so fast they fracture, like trees cracked open by lightning.

What others behold is a personality that’s tight, plastic, and mechanical. We become caricatures of ourselves, feigning relaxation and spontaneity while trying to cope with anxiety. With so much going on internally, we’re usually wondering if we look stressed. So we try to hide our anxiety. But all these maneuvers eat up energy, and sustained contact with others quickly becomes exhausting.

Are there any advantages to being an SOR? Yes, for me and even for you. Because I’m the guy who understands why you’ve asked me not to wear that After Shave lotion. I know how smell can overwhelm and dominate a person. I’ll remember not to wear any lotion when I’m likely to see you, and I’ll even make a notation about it so I won’t forget. I’m also the kind of fellow who’ll readily accommodate you when you need me to stop doing something, or to stop doing it in a way that irks you. And the icing on that cake is that I won’t even zap you with the intrusive questions that normally get thrown my way: Why? You mean this annoys you? Really? How come? My hypersensitivity has made me acutely aware of other people’s sensory needs, and I’m often able to anticipate those needs before they feel a need to speak of them.

I’m an extraordinary masseur who’s instinctively able to interpret your breathing and know what your body wants in the way of pressure and temperature and comfort. I’m the visitor in your home who can calm down an anxious child or comfort a crying baby. I was the twelve-year-old grandchild that grandparents chose to confide in because they appreciated my deep and immediate understanding of their problems with vision and hearing, and especially their need for people to speak slower and to enunciate carefully.

I’ll be forever grateful to the writers and counselors who’ve identified, classified, and carefully articulated the dynamics of SOR. Some counselors classify the spectrum of reactions I’ve described as a sub-type of Sensory Processing Disorder. For a rigorous discussion of these conditions, and ways of finding help for them, I recommend Dr. Sharon Heller’s ground-breaking book, Too Loud, Too Bright, Too Fast, Too Tight.

Yet I’m grateful to these professionals not merely for their ability to grapple with sensitivities that were formerly misunderstood, but for a personal reason as well. Because when any person lives with an ongoing series of yet-unclassified symptoms, and when their etiology hasn’t yet been discovered to have a valid neurological basis, that person tends to evaluate himself just as he’s been evaluated by those around him—specifically, as a weirdo with exaggerated reactions that seem ridiculous, imaginary, and not truly deserving of accommodation. However, because I now realize I’m wired differently than others, I’ve finally let go of the shaming labels that once affected my self-esteem.

Decades have passed since I was that eight-year-old kid confounded by unwanted sensations. I’ve now come to understand the dynamics of Sensory Over-Reactivity, and with the help of astute counselors who’ve recommended everything from Pressure Suits to Brushing My Skin, I’ve learned ways to palliate my discomfort. Living with nerves that operate uncomfortably close to my tolerance level requires me to be assertive about my needs while also considering the needs of others around me.

Today I see the bright side of my condition, for just as the deaf develop new ways of sensing the world, and the blind evolve an exquisite ability to hear, SORs inherit a gift from their over-sensitivities—an uncanny ability to fathom and accommodate other people’s sensory issues, and, in turn, to be forever appreciated for their understanding.

You see, we’ve always hungered to enjoy life the way our friends do, by living impulsively and exuberantly. We’d really prefer to sleep under the stars on a camping trip than stay home just because we anticipate being bothered by the cold night or the morning dew or the sound of a dog barking at the moon. And on Saturday nights, we’d much rather hang out and party with our friends than cringe under their boisterous laughter and thumping music.

Come to think of it, we’d love to dine with the gang at that trendy new Italian restaurant, especially if we get seated at a quiet corner table. And we’ll enjoy wearing our brand new shirts for the occasion.

As long as we’ve first remembered to rip out those damned labels.

Jonathan Frank:

I grew up in an affluent neighborhood enjoying tremendous advantages. But my parent sent me to a child psychiatrist because I was failing in school and avoided people unless they were gentle and considerate. I was tense, disorganized, and not-at-home in myself. I felt counterfeit around other kids-—confused, uncomfortable and plastic. Eleven years of therapy hardly helped me with issues of concentration, follow-through, or self-confidence, though I eventually completed two master’s degrees and held a professional teaching job for 33 years.

When a friend loaned me a book entitled Too Loud, Too Bright, Too Fast, Too Tight, I highlighted many passages relating to my discomfort with noise and light and touch, and it opened my eyes to my underlying neurological condition. My essay reveals what I endure, and how I cope, with Sensory Over-Reactivity. Today—gratefully, I’m confident, happy and productive.

by Jonathan Frank

My Sensory Shutdown Was Not a Panic Attack

STAR Admin — Mon, 22 Oct 2018 20:43:05 +0000

My Sensory Shutdown Was Not a Panic Attack STAR Admin Mon, 10/22/2018 - 20:43

Untethered: it’s a word I’ve often used to describe the feeling of having a sensory shutdown. It’s the moment that my ears, unable to sort through the garbled heap of auditory input, stop trying to form words and derive meaning from sound. It’s when my eyes, unable to weave together fragments of the visual whole in front of me, turn the scenery sharp with parsed, unaffiliated details. It’s the moment my body gives up its battle to make a connection, however shy and tenuous, to the physical space I’m in. Like a helium balloon, I am untied and released with nothing substantial to guide me: not sight, not sound, not physical presence. It’s terrifying but survivable.

Before I knew about these things – how to talk about them, how to explain them to you, I was a child, teenager, and young adult with undiagnosed Sensory Processing Disorder (SPD). I was 14 in the summer of 1997. On family vacation in Quebec, a chatty French-speaking puppeteer and his wooden marionette chased me one evening through a souvenir shop. Absurd, I know. It’s a disturbing pairing in an unusual setting; a strange happening that one might choose to regale others with when one gets home. But for me, undiagnosed and on alert for undefined threats, it was a turning point. There was the moment before the marionette and the moment after, and in between was a massive, gruesome shutdown. Perhaps not my first, but certainly my most severe. I didn’t expect – and couldn’t make sense – of the vile puppet and his friend.

In an effort to shield myself from the barrage of foreign sounds and unusual, jerky movements accosting me, I was forced to disconnect from my senses. I remember sobbing on the stoop of the store, my face pressed into my mother’s stomach. She stood over me, clutching my head and rocking gently. I felt trapped within my own skin and unable to reach the world outside. I worried that I was starting to disappear somehow, that fragments of my body and soul were going missing. I thought: maybe I’ll have to live in this state of purgatory for the rest of my life, neither here nor there, not fully present.

Of course, I didn’t disappear: I just had a neurological difference that no one had identified. Assuming that my challenges were psychological in nature, I started psychotherapy. We analyzed the marionette episode and deemed it a panic attack – something I could learn to work through and minimize. Except it wasn’t that, and neither were the episodes that followed, swiftly and severely, and always, in hindsight, when my senses were most vulnerable. I couldn’t work through or minimize something I wasn’t actually experiencing.

Years later during my first OT evaluation, when I learned about SPD and saw my symptoms in context for the first time, I thought back to the marionette. He’d become a bizarre mascot for the unexplained somethingI’d been searching for since Quebec. It was the first time that my reaction made sense to me. I couldn’t contend with the visual rush of man and puppet, the auditory saturation of language and vocal shift, the unexpected and unusual circumstance in an unfamiliar setting – especially at a late hour, especially in my most vulnerable state. I had SPD and it’d gone overlooked for a long time. That same day, I started writing my blog. I named it Coming to My Sensesbecause for the first time, even the strangest moments of my personal history began to make sense to me. It was like I was waking up.

I make sense in my sensory differences because it’s who I am and how I’m wired. While this knowledge doesn’t make my shutdowns any easier (or meltdowns, for that matter), when I make it through the fog and detachment, when I am able to reboot and reconnect and tether my physical and inner being to the outside world once again, I’m able to explain what happened and what I need to do next.

Not even a puppeteer and his marionette can take that away from me.

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Rachel S. Schneider, M.A., MHC

With a Bachelor's in Psychology from Brandeis University, a Master's in Mental Health Counseling from the Ferkauf Graduate School of Psychology at Yeshiva University, and through my own experiences as an adult with SPD, I advocate on behalf of those like me who searched for years to find the explanation for their particular sensory challenges. I am passionate about SPD and how it affects adults. In common parlance, SPD is a childhood disorder, but this fails to recognize the innumerable adults who lacked a proper diagnosis in childhood, and now must learn to redefine themselves and their abilities in adulthood.

After my own diagnosis, I hungrily searched for material to support and validate my own experiences, but very little existed for delayed-diagnosis sensory adults. I began writing my blog, Coming to My Senses, to serve as an intimate picture of SPD diagnosis and treatment in adulthood.

by Rachel S. Schneider, M.A., MHC

Anxiety Disorder

Making Sense of Your Sensory Onion

STAR Admin — Fri, 05 Oct 2018 17:22:17 +0000

Making Sense of Your Sensory Onion STAR Admin Fri, 10/05/2018 - 17:22

Here’s a moderately interesting piece of information: of all the adults I know of who’ve been diagnosed with Sensory Processing Disorder, I am the only one who was diagnosed as a child - in 1996, to be exact. In fact, it used to be called Sensory Integration Disorder. That’s right, there was no “P.”

This has left me in a unique position. I've had nearly 20 years to experience my life with SPD fully knowing that I had SPD. (In case you didn't know, this is not common for adults with SPD.)

Unfortunately for lots of people, they live many - difficult - years not knowing what on Earth is going on with them. They have confusing and embarrassing issues that nobody can explain. Often, other diagnoses are used to account for the wide range of problems, but those diagnoses don't fit right. It's like forcing a puzzle piece into the wrong space when you're desperate to finish the dang thing. You know that particular piece doesn't work in that spot, but it's the closest one, and you're getting tired of figuring out this puzzle. You’re left with a wonky-looking puzzle, and an overwhelming sense of exasperation.

That's what it's like to be a sensory person without knowing that you are one.

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As SPD'ers, we tend to spend an outrageous amount of time attempting to make sense of ourselves and our place in a world that doesn't seem too perceptive regarding our comfort or functionality. We make charts. We make lists. We experiment. We talk and cry and share until we find some solution - any solution - on how to manage living with an atypical neurological makeup.

If only it was that easy! Unfortunately, we aren't gifted with a set of instructions for how to manage our sensory brains. We are left with the often daunting task of making sense of all that ourselves.

The ease of this task seems akin to climbing Mr. Everest on a cow.

The Sensory Onion

Understanding your sensory self comes in layers (yes, as Shrek said, like an onion). Once you discover one layer of yourself, it leads to things hidden underneath that you wouldn't have discovered if you hadn't peeled back that first layer initially.

For instance, you've always assumed that you despised getting your hair cut because you don't do well with small talk, but as it turns out, you're tactile defensive, and having your hair touched in any manner is distressing to you.

There's the first layer of the sensory onion. It makes sense that you can do well with small talk in other places, but at the salon or barber, your hair is being touched during conversation. The hair touching is the real problem, not the small talk. Yet, the small talk becomes more difficult because of the hair-touching distress, hence the confusion.

As it usually happens when dealing with onions, there will probably be a lot of tears when you start to peel back the layers.

The realization that your life-long struggles can be traced back to a singular disorder and it has a name and it's REAL - that's quite a moment. That's the kind of moment where Oprah pops out and starts dishing out Volkswagens like some kind of freaky Santa. It's also a moment where you want to fall to the floor hysterically crying. You are mourning the struggle you or your child has faced. It was long - too long - and you've probably developed additional health problems trying to figure out that you had sensory issues all along.

There were most likely too many times to count where thoughts in your head looked like this:

After realizing that your seemingly random issues can all be attributed to one source, it's liberating. Your perspective of yourself and your life is altered drastically, and when a situation arises, you know it's probably your SPD at the root of the problem. And once you know that, you can get access to the tools and techniques to solve the problem.

But, it's not all sunshine and caramel fudge brownies. Some days, you still won't make sense. But that's part of the sensory journey. Your sensory onion is gigantic, and you're still peeling away those layers. There will be sensory problems that you will continuously have to overcome, and there will be no easy solution. There will be days where nothing makes sense and then, days where everything makes sense, and you'll feel like you and Moo-lan really did make it to the top of Everest.

If there’s one thing I know for sure, it’s that despite my early diagnosis, I’ve still got a long way to go with peeling away the layers of my sensory onion. But with every layer I get through, the more I realize that all this sensory nonsense can and will make a whole lot of sense.

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Kelly Dillon is an adult with Sensory Processing Disorder, and the writer and illustrator of the blog Eating Off Plastic, where she humorously chronicles her life with SPD. She is a proud SPD advocate for children, teens, and adults. Kelly enjoys creature comforts, pacing in small rooms, and cupcakes. She has her Bachelor’s Degree in Psychology from SUNY New Paltz. Visit her website!

by Kelly Dillon

When You Realize It's Not Just Your Child That Has SPD

STAR Admin — Fri, 08 Jun 2018 20:19:14 +0000

When You Realize It's Not Just Your Child That Has SPD STAR Admin Fri, 06/08/2018 - 20:19

When we work with families at STAR Institute, we often come across parents who just get it. Parents with SPD get what’s going on with their kids, because it’s their life, too. When we think about parents like that, Laura is someone who immediately comes to mind. Her SPD story started when her son was diagnosed with SPD at an early age. She brought him to STAR Institute before we started the teen and adult program. As she went through the process of learning about SPD and understanding her son, Laura had a realization: “This is me! Wait a minute, this is describing me!”

As you may have seen in our Facebook Live videos, we talk all the time about how important support and understanding are for teens and adults with SPD. As we got to know Laura and her sensory “superpowers,” we became huge fans of her wit, openness and perspective. She is always striving to learn more and to be a caring advocate for her family and others with SPD.

About a year ago, Rachel Balderrama, family counselor at STAR Institute, interviewed Laura about her story. If you attended the Parent Workshop at our Symposium last October, you saw clips of her interview in Rachel and Sarah’s presentation. Here are some excerpts from their inspiring interview.

RB: It’s so valuable hearing about your experiences and your journey. There’s something so comforting about hearing a story like yours, because it can help families know they’re not the only ones going through something like this. I’d love to start out just hearing about your journey in learning about your own sensory issues.

Laura: You know, I was just always very particular about certain things. Growing up, there wasn’t any sort of information about SPD. I was my mom’s fourth child born within five years. All of a sudden, she had this kid who was just so much work. She used to go to seminars for The Strong-Willed Child. I was so demanding. Everything had to be tight – tighter, tighter, tighter (dresses, shoes). I don’t like it when things move on my skin. I had things like that forever. I didn’t ever know that wasn’t normal, or not typical. (laughs)

When my son got diagnosed and I started learning more about [SPD], I remember filling out all the forms for his evaluation, and I was like, “This is me! Wait a minute, this is describing me!” It was very eye-opening. I had the initial sense, “There’s something wrong with me! I’m damaged, or I’m not normal, whatever that is.” But that was short-lived. Once I got through the initial shock of it all, I was so relieved, because it explained so much. I was able to say, “Oh, that’s why I freak out if you touch one hand but not my other.” I have to [even it out], or it throws my whole body off. It gave me that sense of, “Oh, I just feel my body in such a different way, and that’s okay. There’s nothing wrong with me, I’m just built a little differently.” [That knowledge] was such a relief. It became something that gave me comfort [to be able to say], “Oh, that’s what’s happening.”

RB: Looking back, how do you think your challenges affected how you grew up?

Laura: I had the benefit of being the fourth kid in five years, so I had neuro-typical older siblings, so I knew how I should behave. I knew what was socially expected and acceptable and all of those things, and I think that helped me blend well. But I also remember a conversation I had with my sister when I was 15. She was 17. I was a freshman, she was a junior in high school. She was “Ms. Popularity” and I was the geeky little sister. (laughs) I asked her, “How do you have so many friends? Why do so many people like you? Why is that so easy for you?” Because it never was for me. I always had a couple of friends. There were a couple of kids I would hang out with at school, but I never had a core group of friends. Also, once school was out, my phone didn’t ring. But I also didn’t call anybody else. My friends were very much out of sight out of mind. I would just go home and do home things. I didn’t necessarily feel like I was missing anything, except I could see my sister out doing, doing, doing, doing, and I was like, “Why is she doing so many things?” It just didn’t make sense.

When I asked her why it was so easy for her, she said, “I see you at school, but you’re always looking down. You don’t look at people. If you don’t see people, they’re not going to see you.” I remember thinking, “You’re crazy. Whatever.” Then, the next day at school, I noticed I was looking down while I was walking down the hall. I’m so visually sensitive. When I was walking down the crowded high school hallway, and there’s hundreds of kids and they’re all bumping, throwing paper wads, with the fluorescent lights, I didn’t want to see it. When I realized she was right, I started to try to look up. It did not feel natural at all. I tried to pay attention and look at people. “Maybe they’ll see me if I see them.” It got better, and it got easier. I had to work at it. It wasn’t something that just came naturally to me. I come from a family of outgoing, talkative people who have never met a stranger. I was the only one that was not like that. But I’d seen it and I knew what it was supposed to look like. I just had to work harder to do it.

RB: So, being a teenager is already difficult enough. As teens, we all have to figure out who we are and how we fit. As a teenager growing up, not knowing about your sensory issues, how do you feel your sensory issues impacted how you thought about who you were in your family?

Laura: It was clear to me that I was different. I just didn’t know why. I think I spent my whole childhood burning all my calories because I was flipping and flopping everywhere. I was a gymnast. My mom used to say, “Laura doesn’t walk anywhere, she flips there.” I think because of that, I had a teeny-tiny frame. When we were in high school, my sister looked like a growing young woman, and I looked like a ten-year-old boy. I definitely had self-esteem issues growing up because I could never measure up to my sisters. Not only with my sensory self, I physically didn’t measure up to my sisters. I was the smaller, kind of skinny, knees and ankles girl. So not only did I have the physical difference, where I didn’t feel like I matched up, but I couldn’t even socially keep up. So, I became a jokester. When I get kind of uncomfortable, I’ll crack a joke. Or I’ll try to make it funny and try to lighten the tension that maybe I’m the only one that feels, but for some reason, I’m feeling it [in the moment]. Sometimes it worked growing up, sometimes it just came off as weird. (laughs)

RB: You have a really unique perspective on SPD because you are in real time, seeing it. You’ve lived it, through all the stages, and now you have two kids at different ages. All three of you have different nervous systems and react to things in different ways. What is it like to see that?

Laura: My kids are so different. I mean, completely different. My son got diagnosed very young because he was not developing on target. He never learned to crawl. He did a weird leg scoot thing because crawling wasn’t going to happen. He wasn’t talking. He wasn’t acknowledging that I was in the room. For him, it was so obvious there was something happening. We were very fortunate to work with a speech therapist through early intervention who had worked for STAR Institute. She was very familiar with sensory issues and was the one who told me his speech problems were coming from his body. They were body problems. She got us an OT consult and the OT confirmed it was his body that needed to be worked on. He had such visible challenges.

My daughter never did. In hindsight, now that I know what I know, she did. I was young when I had her, and I was living in Central America, so resources were much less than what they are here. I was alone. I didn’t have my family there. I had this baby who didn’t feel full as a baby. I would nurse her, and every feeding was about an hour and a half. Then she would profusely vomit, and then nurse again. Her doctor said she had reflux and that she would stop when she was full and to be sure to keep feeding her because she needed to eat. My son is the opposite. He doesn’t feel hunger. He never wants to eat. When I was nursing him, I thought I wasn’t producing enough. He was fine, but it was so different than my experience nursing my daughter. I don’t feel thirst. I can go all day and be brushing my teeth at night and realize, “I don’t think I drank anything all day.” It’s interesting how we’re all so different.

My son would have meltdowns and slam his head against the wall. I remember he would seek something hard, and I would put my hand in front of his forehead to shield him, and he would keep scooting because he was going to find a hard surface to slam his head on. He would have meltdowns that seemed to last hours. My daughter never did. She was super easy going, the most chill kid ever. She was clingy, and she was needy, and on top of me all the time. Whereas my son would really prefer if you never touch him. He’s perfectly fine with a high five and a thumb’s up.

RB: For your daughter, have her sensory issues changed as she’s gotten older?

Laura: Yes. When she was little, she was clingy, clingy, clingy. As she has gotten older, she has more of that startle response when I come up and put my arm around her. If she’s upset, my instinct is to hug her (even though I don’t particularly like hugs myself). I want to console her, but she doesn’t want me to touch her. She was never like that when she was little. I think that’s come with puberty. I think that was the same for me. When I was little, I loved snuggle time with my mom. Now, I constantly tell my mom to stop touching me. She is super touchy, and I have to tell her, “That’s enough.”

RB: Do you see similarities in how your sensory issues impacted you in how you see them impact your daughter?

Laura: Yeah, I do. In the same way I said my friends were out of sight, out of mind, it’s the same for her. Because I’m aware of that, and I know how that feels when you don’t get why all your friends were out this weekend but you weren’t there, so I’m the one mom in the world who says, “You need to be looking at your phone. You’re not texting enough!” She won’t even respond to her texts, so I’ll look at her phone and see group texts about plans and tell her, “You have to chime in.” I tell her, if you don’t make yourself known, you’re not going to be seen either.

RB: What makes that hard for her?

Laura: I think it really comes down to her not knowing how to get in there, the right thing to say. She has a core group of friends that are awesome. She has what I didn’t have. She has one friend in particular who is amazing. She really wants to understand my daughter. When I was explaining it to her what SPD is, how we feel things differently, she said, “It’s almost like you guys are the next evolution in man. You’re what’s coming next. You guys are like more evolved and more in tune with the world. That’s awesome.” I think that made my daughter feel good. When she first got diagnosed, she didn’t want anyone to know. She was embarrassed, she was ashamed, she was all those things. Thankfully, she got over it pretty quickly. Before I knew it, all her friends were totally aware, and it was good. I think she has some of the challenges I had as a teenager, but I have my eye on the situation and I will say, “You need to respond,” [when people text her].

RB: For you, how do you feel that having sensory challenges has made you stronger?

Laura: I think I see the world differently. I see more than the person next to me might see. I feel more. I’m also more understanding of people who are having a hard time for whatever reason, whether it is a sensory issue or dyslexia or something else I don’t have. Even though I don’t have that particular challenge, I know what it feels like when you feel like your brain should be doing something that it’s just not doing- or it’s doing it backwards, upside down, or whatever. It’s just that inner understanding of, “We are all so different.” I don’t think there’s somebody out there who could be labeled as a “normal person.” I don’t think that exists. I think everybody has something, whether they know it or not, that is a challenge for them. That, to me, is the biggest thing. For example, I’ll be playing on the playground with my son and other kids, and I’ll see a kid who is struggling with something. Even if I don’t know why, I just have the understanding of, “Let’s help that kid get his foot up there,” or, “Yeah, man, you’re having a meltdown because your cup got dirty. I get that! I hate that too! Let’s clean that up.” That’s what I like the most about [having SPD]. I feel like, whether I like it or not, I have to be understanding, because we are all so different and not one of us are broken, just different.

RB: In terms of advice for others, is there anything you’d like people to know about sensory processing disorder or your sensory challenges?

Laura: The biggest things that I always want to say are, “It’s scary at first because you don’t know what it means. Once you understand it, even just a little bit, [the better you’ll feel].” You know, I’ve been on this journey for years now and every time I walk through [STAR Institute’s] doors, I learn something new. The more you understand it, the more peace it gives you. It helps you understand yourself, why you’re feeling [a certain] way. Like, why do I get tunnel vision in this scenario? Why do I start shaking in this scenario? It starts to help you understand it, and then you know to calm yourself. “Activate coping mechanisms,” is what I always tell my kids. “Hey! Activate coping mechanisms. It’s very loud in here everybody!” And we do. That’s all we can do.

You start to feel if it’s your body screaming at you, or sagging, which can be the case sometimes, it helps you to recognize what it is that’s going on. While it never goes away, you learn to cope with it and you learn it doesn’t have to be that big a deal. You know, maybe, I need to take really deep breaths when my daughter makes me go into Forever 21. (Ugh, I hate that store, so much stuff in there!) You just kind of learn what your body is saying and then it’s cool. Just knowing this is what’s happening, and this is why. I can’t even tell you how much this has helped. My kids react differently in different situations. I can go in prepared. I can prepare my kids. For my young son, I know I need to tell him the steps, the experiences he will have. “I know it’s hard, I get it, it’s hard for me, too. Game face, let’s go.”

RB: What’s has been helpful in managing your SPD? Is it just understanding it?

Laura: A hundred percent. It’s been huge. Just knowing this is why this is happening, I can’t even tell you how much that has helped. For me, it’s empowering just to know, this is okay. I am not a weirdo. There’s nothing wrong with me. This is okay. Unfortunately, I’m still so much better reading my children than myself. Now, just finally starting therapy for myself has been an interesting change, because I’ve learned everything about me through my kids and through the education I get at STAR Institute. The [education] may be [about] my children, but, you know, it’s the same. It explains me. I recently had an episode at an allergist appointment. I held it together through the appointment. I had to, as an adult, and they were professionals. When I left, I couldn’t stop coughing. I was just in sensory overload and couldn’t control my cough. I couldn’t control my body enough to realize I had been under stress and it was meltdown city.

RB: You had an adult meltdown that was the equivalent of children holding it together in school and then losing it the second they’re in the car.

Laura: Yeah, it was awesome. It took me a while to realize what had happened. That’s what made me realize I need to figure out my body. If I had realized what was happening, I could have just asked them to turn the light off in there. That’s when it occurred to me that I should learn about me and my specifics. As much as learning about my kids has been helpful to me, and a lot of it applies, the one thing I can’t know is how they feel. That’s the one thing I haven’t been able to read about myself just yet, that interoceptive thing of what is going on in[side]? I know I’m tense, but I don’t know why. So often I’ll realize my whole body is clenched and I have to tell myself to relax and figure out why I’m tense. What is going on in the world around me?

RB: What a journey it is, even for an adult. We expect so much from kids, but our own ability to be aware of our body is doing takes a lot for us to slow down and identify. Being intentional and conscious in figuring out where [tension] is coming from, is a journey for adults with sensory issues. You have good perspective on how this affects an adult. It helps us think about the journey our kids and teenagers go through on the way to becoming aware of themselves.

Laura: My daughter got really aware, really fast. She started her treatment here, and I saw such drastic changes. It’s not that she’s not getting the sensory signals, she is, but she’s learning to recognize them. In a ridiculously short amount of time, she’s learned how to manage [her symptoms]. Before she learned what helped her, she was so forgetful. Now that she knows what helps her focus, she can do tasks so much better and can do a more complete job.

RB: What is one amazing thing (for your son, your daughter, for yourself) that has formed who you are as a person?

Laura: I think the message that I want my kids to have, so I’ll share that, is: “We just are who we are. We are exactly who we were meant to be.” It’s sometimes a little bit hard to navigate the world around us, not impossible, but a challenge. Ultimately, I think learning who we are and what makes us the way we are gives us that sense of self. That is who I am! I am overly stimulated by certain things. I don’t feel things the way you think I should, but that’s who I am and I’m never going to not be that and that is always okay. That is the theme of my home. We are who we are, we are all different. Even within our family with the same diagnosis, we are all so different. It looks so different on all of us. And that’s okay. I think we’re pretty awesome.

RB: Absolutely. I one hundred percent agree.

If you are looking for SPD treatment for yourself or your child fill out a child or adult intake form now to be treated at STAR Institute Treatment Center or search our Treatment Directory to find services in your area.

Sarah is a licensed and registered occupational therapist with experience in inpatient and outpatient pediatric hospital, school-based, early intervention, summer camp, and private practice settings. She graduated with a Master’s degree in occupational therapy from the University of South Alabama and spent several years working in Tennessee and Georgia before coming to Colorado.

Sarah is committed to helping individuals with Sensory Processing Disorder and their families experience life to the fullest. Sarah is trained in DIR/Floortime, Integrated Listening Systems (iLs), Interactive Metronome, Handwriting Without Tears, Therapeutic Listening, Brain Gym, NeuroNet, ALERT program and SOS feeding interventions, among others. She has extensive knowledge and training in Sensory Processing Disorder treatment and evaluation through participation in the Level 1 Mentorship program with the STAR Institute. She loves to read and is always open to learning new ways to help the clients and families she works with. Sarah is married, has two young children, and she loves exploring all the adventures Colorado has to offer in her free time.

Rachel Balderrama, M.Ed.

Rachel brings to STAR Institute a breadth of experiences and skills. She graduated with her Bachelor’s of Arts from the State University of West Georgia. Rachel received her Master’s in Education in School Counseling from Georgia State University and is a licensed Professional School Counselor. Following three years of work as a high school counselor, Rachel served for two years in Burkina Faso as a Peace Corps volunteer, working in the sector of Girls’ Education and Empowerment. Due to this work, she founded and is the Executive Director of a nonprofit organization dedicated to raising awareness about gender equality and building schools in poor African communities. Prior to coming to STAR Institute, Rachel worked in community mental health with families of children and teenagers who were in the foster care, adoptive, juvenile or truancy court systems. This multi-faceted work included conducting clinical assessments, providing consultative services for Child and Protective Services, and providing counseling and psycho-education for families and children. Rachel conducted seminars and mentored other staff on assessment procedures. Rachel has completed the STAR Institute Intensive Mentorship Program Level 1. As a STAR Institute Family Counselor, Rachel is passionate about educating, supporting and empowering families as they seek to improve quality of life for their children and themselves.

By Sarah Norris & Carrie Einck

Assessment, SPD

My SPD Diagnosis Helped Me Understand My Story

STAR Admin — Tue, 08 May 2018 16:55:40 +0000

My SPD Diagnosis Helped Me Understand My Story STAR Admin Tue, 05/08/2018 - 16:55

In September 2017, we came across an inspiring TED Talk by Jennifer Allison that made us instantaneous fans. Her ability to compose herself in a calm and organized manner while talking about sensory challenges, addiction, and joy struck us with awe. In her TED Talk, Jennifer shares her love for art and she is REALLY talented. About a week later, we had one of her prints hanging above the door of our shared office.

During that time, we reached out to Jennifer to see if she would like to collaborate. She agreed to go live on Facebook to talk with us about her story, her rambunctious childhood, and her sensory “superpowers.” Since we’ve started to share Sensory Processing Disorder (SPD) stories, we’ve realized that one of the many things a correct diagnosis can offer is new understanding and the opportunity for the individual to change their own inner story of themselves. We will let Jennifer elaborate through her own experience…

What inspired you to share your SPD story with others?

I know first-hand how challenging it can be to have SPD and the misunderstanding it can create in relationships. Decades of my life were marked with chaos and confusion because I struggled with everyday things that most other people don’t. However, I finally learned that I’m wired like this for a purpose...and there are PERKS to my perception! I share my story now to help others understand the struggle is real, but people who are wired differently can reach their full potential with the right support, and by being who they are meant to be.

How has learning about SPD changed the way you tell your story?

Most of my life I was told I was a difficult, strong-willed, ornery child. I often felt isolated, like I didn’t belong in this world. I believed that there was something wrong with me. As an adult I continued to struggle with the same issues, no matter how hard I tried. So when I FINALLY received my SPD diagnosis (in my forties) it COMPLETELY changed my life. The diagnosis gave me context to understand why I perceived the world so differently. It validated the unique experiences I had been having for decades. It helped me focus on the benefits of having a brain like mine. But most of all, the diagnosis played a big part in helping me restore many strained relationships in my life. Now my story has a happy ending!

What has happened in response to you sharing your story?

Sharing my story has connected me with thousands of other people who feel misunderstood or have similar struggles. I’m able to encourage them as well as receive support from them. I no longer feel like I’m alone in this world! Many people have thanked me through streams of tears for giving them better insight as to what their children or loved ones are going through too, which really motivates me. Sharing my story has given me hope and purpose, so all my struggles were not in vain.

What would be your advice to others who are thinking or planning on sharing their stories?

I would urge others be authentic. To always be yourself. Don’t aim for “normal” and stop trying so hard to fit into to a mold you were never meant to fit into. Instead, focus on learning how to use your special gifts in positive ways. Surround yourself with others who can support you. Find healthy coping mechanisms. Be honest and transparent about any special accommodations you need. Then embrace your gifts and share them with the world! It’s a win-win for everybody when we all do this.

We’re so grateful for the work that Jennifer continues to do for the SPD community. We look forward to sharing even more stories that we’re fans of in the future. Stay tuned!

If you are looking for SPD treatment for yourself or your child fill out a child or adult intake form now to be treated at STAR Institute Treatment Center or search our Treatment Directory to find services in your area.

Get the series now! Learn about five essential topics for adults and teens with Sensory Processing Disorder (SPD). This series is for individuals with SPD, parents, caregivers, and professionals working with the SPD population.

Presented by adult SPD specialists, Carrie Einck, MS, OTR/L and Sarah Norris, MS, OTR/L who have spearheaded STAR Institue's renowned adult and adolescent treatment program.

Carrie Einck OTR/L

Carrie graduated with her Master’s Degree in Occupational Therapy from the University of Wisconsin- La Crosse. She has extensive knowledge and training in Sensory Processing Disorder treatment and evaluation through participation in the Level 1 Mentorship program with the STAR Center and through participation in the SIPT Certification program. Carrie has also received training in iLs, Therapeutic Listening, SOS feeding approach and Handwriting Without Tears.

Before joining the STAR team, she worked in both the outpatient pediatric clinic setting and school settings in Chicago and volunteered abroad as an OT in order to further her understanding of occupational therapy from a global perspective. In Chicago, she also founded a community-based social skills group for kids of all ages and abilities that promote social skill building and motor development through a fun and motivating class taught on mini trampolines.

Jennifer Allison

At UPS, Jennifer Allison designs applications that allow customers to complete complex tasks that feel simple. Inspired by her personal experiences, she leads her UX team with a rare philosophy: designing solutions for disabled users will ultimately improve the experience for all customers. A user interface designer by day, by night, she is an artist. She is an avid painter, and has published several coloring books featuring her work. Jennifer graduated from the American College for the Applied Arts in Atlanta with a bachelor’s in commercial art. She is known by friends and fans online as “Rambunctious Kid.”

To hear more of my story about growing up with SPD, and how art helps me thrive, watch my TED Talk or visit my blog.

By Sarah Norris, Carrie Einck, Jennifer Allison

There Were Few Adults with SPD

STAR Admin — Tue, 08 May 2018 15:49:27 +0000

There Were Few Adults with SPD STAR Admin Tue, 05/08/2018 - 15:49

As STAR Institute therapists for the Adolescent and Adult Treatment Program, we’ve seen so many of our clients take their sensory processing challenges and use them as sensory “superpowers” and develop amazing abilities. These newly repurposed abilities have helped them succeed in work and parenting, become SPD advocates, and so on. Recently, we decided to share our own personal sensory stories. In that process, we learned just how difficult sharing personal life experiences can be and how helpful it is for the storyteller and the listener. We believe that there is power in community and that storytelling plays an important role in bringing people together.

This month, we’ve asked Rachel Schneider, author of Making Sense, to share her Sensory Processing Disorder (SPD) story with all of us. Like many present day adults with SPD, she was not diagnosed as a child and she found herself exploring an SPD diagnosis as an adult. We were immediate fans of her book upon its release and we were pleased to meet her at STAR Institute’s 3S Symposium in 2016. Rachel agreed to get on stage under the bright lights in front of hundreds of professionals and share her story. She did it gracefully and unfiltered, which made us even bigger fans on the spot. She’s an advocate in every way and always willing to share.

And this is what she shared with us…

What inspired you to share your SPD story with others?

When I started my blog, Coming to My Senses, in 2010, it was a way for me to reflect on my own experiences during evaluation and the early days of OT and help me make sense of the new things I was learning about myself. At the time, I hadn't come across more than one other adult with SPD, and I felt alone in my challenges, as I had my entire life, and assumed no one would ever find my blog or want to hear my story. When people started emailing me, telling me that they found my blog and were going through the same things, I was shocked but also excited. I love connecting with and helping people (my graduate degree is in Mental Health Counseling), and here was a new opportunity for me to help people who I understood so deeply because I was one of them. During the early days of my delayed diagnosis at age 27, I felt especially frustrated that there were so few resources for adults. People used to say to me, "isn't SPD a childhood disorder?" and I would say - "well, I'm an adult with it, so whether or not it impacts children, it impacts me in adulthood too." That frustration, along with my love of people, fueled my passion for being a leading voice of the adult SPD community. I wanted to scream: PAY ATTENTION TO US! WE ARE WORTHY OF YOUR CONSIDERATION! And I continued to do that through my blog, articles, social media posts, and eventually, books.

How has learning about SPD changed the way you tell your story?

It's not so much learning about SPD that changed how I share my story but accepting my diagnosis that changed the way I felt about SPD, and so how I tell my story changed as well. Sure, learning about SPD - especially the research that's been conducted - enables me to sound educated on the topic and it gives me a concrete, scientific basis for my experiences, but the more I share my story, the more I'm able to make sense of my past and present. It's like an ongoing therapeutic exercise. Each time I describe my particular sensory sensitivities, each time I revisit what I once deemed a traumatic moment of my past, each time someone else says, yes, I hear you, I understand you, it takes away the negative power that my then-unnamed condition had. Early on in my sensory education, I wove true tales about my life with a focus on the hurt and the drama. I was the victim in these stories, at the mercy of a nameless condition that altered the course of many moments of my childhood, adolescence, and early adulthood and impacted my self-worth. Through therapy and with the connections I continue to make in the SPD community, I've learned how to share my story from a position of strength. Here I am, I say. Here are what you may deem weaknesses, but I see them as respectable limitations and acceptable reactions to particular neurologically-based needs. I believe that telling stories and sharing our most personal hurts, especially with those who understand, give us the chance to restore our own power in the face of our differences.

What has happened in response to you sharing your story?

(Building on the last answer - some of these are intertwined), sharing my story has allowed me to become the heroine of my life. I once was the scared young woman who was at the mercy of some unnamed "thing" that impacted the way she comprehended the physical world around her and how she was able/unable to engage. Now I'm (mostly) at peace with what it's like to be me, and to love who I am exactly as I am. My theory still remains: this is my life and life is short. I have two choices. I can forfeit my time here, distraught and angry about my unique needs, and be miserable until the end, or I can celebrate, accept, and live peacefully with my differences and perceived limitations and be happy. Sharing my story has also allowed me to reach thousands of others like me. I like to think that my very public insistence that I'm okay and worthy in spite of my neurology (or even because of my neurology!) has helped encourage our field to look closer at adults, and I hope that I've given other adults with SPD the guts to stand up for themselves and share their own stories to make sense of their lives.

What would be your advice to others who are thinking or planning on sharing their stories?

Your story is important, it is valid, and it is beautiful. Do it. Don't deprive the world - or even yourself - of the deepest expression of who you really are. People may not like what you have to say, but that's their problem, not yours. You are worthy and deserve to make sense of the differences and special challenges you've had to face. Right now, someone out there with SPD is waiting to hear your story. They're drowning in an ocean of fear, doubt, and shame. It's a destination I used to haunt and it's one I know you're all too familiar with as well. Your story will be their life raft and your presence will be their rescue vessel. Quickly, go share!

We’re so grateful for the work that Rachel continues to do for the SPD community. We look forward to sharing even more stories that we’re fans of in the future. Stay tuned!

If you are looking for SPD treatment for yourself or your child fill out a child or adult intake form now to be treated at STAR Institute Treatment Center or search our Treatment Directory to find services in your area.

Presented by adult SPD specialists, Carrie Einck, MS, OTR/L and Sarah Norris, MS, OTR/L who have spearheaded STAR Institue's renowned adult and adolescent treatment program.

Carrie Einck OTR/L

Rachel S. Schneider, M.A., MHC

By Sarah Norris, Carrie Einck, and Rachel Schneider

Impact of SPD on Childhood and Adolescence

SPD and Sexuality: An Interview

STAR Admin — Fri, 13 Apr 2018 14:11:56 +0000

SPD and Sexuality: An Interview STAR Admin Fri, 04/13/2018 - 14:11

Can Sensory Processing Disorder (SPD) and sexuality impact one another? If so, how does this look, especially in terms of relationship?

In the following interview, we explored one young man’s experience as a self-identified gay man and person with SPD.

Woody is a 24-year-old recent college graduate who became aware of his SPD and his sexuality at young ages. Woody agreed to talk to us about what those discoveries were like and how they have, or have not, impacted one another throughout his life, especially in the development of his meaningful relationships.

Sensory Processing Disorder or SPD is a neurological disorder in which the sensory information that the individual perceives results in abnormal responses.

Sensory processing refers to the way the nervous system receives messages from the senses and turns them into responses. For those with Sensory Processing Disorder, sensory information goes into the brain but does not get organized into appropriate responses. Those with SPD perceive and/or respond to sensory information differently than most other people. Unlike people who have impaired sight or hearing, those with Sensory Processing Disorder do detect the sensory information; however, the sensory information gets “mixed up” in their brain and therefore the responses are inappropriate in the context in which they find themselves.

Jump to different parts of the conversation by clicking the links below...

Self-Identification

SPD Self-Discovery

SPD and Relationships

Sexuality Self-Discovery

SPD and Sense of Self

Self-identification

Mim: How do you define your self-identity in terms of your sensory experiences?

Woody: As far as my SPD goes?

M: Do you say you have SPD?

W: I say I have SPD.

M: Believe it or not, there are other options

W: Really?

M: Some people prefer “sensory differences,” “sensory challenges.” They don’t use the term “disorder.” That doesn’t mean that’s wrong. It’s just however you identify.

W: I like to call it as the scientific consensus calls it because I’m a “sciency” person.

M: How do you self-identify your sexual identity?

W: Gay…. It’s pretty accurate.

SPD Self-Discovery

M: What is your first memory around your sensory experience as being different from those around you? Do you have a memory like this?

W: Honestly a lot comes from stories that my parents have told. I have the great luxury of being someone who went through treatment at a very young age. I started treatment… I remember actually doing the initial testing.

M: How old do you think you were?

W: I must have been... I think it was around second grade.

M: So, like 7 or 8 years old?

W: Yeah. I remember my mom saying to me, “Hey after school, I’m gonna take you out a little bit early and we’re gonna go see this girl Andrea” -- who was my first OT. A different Andrea [from one currently working at STAR Institute], she lives in England now - lovely human being. I don’t know that I always… The thing that I always tell people, with Sensory Processing Disorder is that you can’t… it’s never really visible to you. Right? That’s just who you are.

M: Can you describe how you experienced SPD in your childhood?

W: I have plenty of memories of being really sensitive to loud noises. The one that I always tell, I told it in a video a while ago. We went to see “The Iron Giant.”

M: I remember that movie.

W: And we were a little bit late and when we got into the theater, the giant was crashing into earth and it was really loud and from what my dad says, I was on the floor with my hands over my ears because it was too much. Yeah... and once I got in, it was fine and then… this is a story that I haven’t told as much but I’ve always wanted to. I’m a huge Disney fan and theme park freak.

M: I know about your Disney love.

W: A little bit ironic. I don’t know if you’ve ever heard of “Dinosaur” the ride?

M: Yes.

W: Yeah at Animal Kingdom. You’re going through and you’re driving past all of these dinosaurs. Cars are on hydraulics so they kinda do all this weird (moves around in seat)… But the audio on that, even the introductory audio where they do the “time travel commences in T-15 seconds” is unbelievably loud. And so, when I was a little kid, I would go on the ride and I would just have to sit there with my hands on my ears. It wasn’t necessarily that I was scared of the giant dinosaurs. It was just so loud that my fear reaction was fighting me on every turn.

M: It is incredible that your love of theme parks was so strong that you put yourself in those situations. You refused to let these strong reactions stop you from the overall experience.

W: I remember when YouTube first came out and people would post videos of the ride and I just got to the point where I would memorize the dialogue so that I knew exactly when to cover my ears. I could kinda hang in there for some of the lighter parts but there were just a few points where I had to (places hands over ears).

M: Wow. That’s intense. So, listening to what you’re saying, it sounds like you describe yourself as someone who has over-responsivity to sound.

W: To sound. I have cravings for compressions. I have a weight blanket. Honestly, it could be 200 pounds and it wouldn’t be heavy enough. This is probably the most subtle of them all but, weird textures and stuff on my hand. It’s just kind of (shakes hands)…

M: Over-responsive.

W: Yeah. And it’s never bad enough, thankfully, that I can’t tough it out but it’s like “I want this off of my body… now.”

M: So, I am hearing you describe over-responsivity to sound and touch and that you seek out body input or deep pressure.

W: Yeah.

Impact of SPD on Childhood and Adolescence

M: So now I want to get into your memories of your SPD and how it impacted your childhood and even your adolescence. And it sounds like remarkably, through your resiliency and intrinsic motivation, you found work arounds.

W: I found work arounds. And it took the internet existing... and all sorts of stuff. And admittedly, I got a really great skill set from that initial treatment so that I knew... Andrea always used the Winnie the Pooh metaphor—Sometimes you’re Tigger and sometimes you’re Eeyore but you want to be Pooh. You want to be right in the middle. So, it... I had… and especially, just knowing what the issue was, made such a big difference for me. If it hadn’t been for my treatment at STAR Institute, we never would have known. And it would have just been “well he’s a scaredy cat.”

M: Outside of the Disney World anecdote, can you think of a time in high school or maybe middle school where that knowledge and understanding of yourself and your needs…

W: Basketball!

M: Ok. Tell me about that.

W: I have never played sports in my life.

M: Why is that?

W: I don’t know. I have always been more of an intellectual person rather than a physical person. Even though I’m this big lumbering guy... I’ve always... I’ve never had the coordination to do well in sports. And it always kind of… not only did I not really want to do it in the first place but I was kinda… it was kind of a demotivation, knowing that I had struggles with it. When I started playing basketball, I was awful. I had to play my freshman year of high school. I ended up on the team… because it was a requirement.

M: I was going to say, it doesn’t sound like an intrinsically motivating thing. But if it was a requirement, then you had to do something sports-related for the school?

W: I had to do something. I actually started out with a basketball conditioning course which was awful. It involved running ladders on the soccer field and, over time, it almost became a vendetta. Like “this is happening, dammit!” and there was weird coach drama… I was never like the star player but I did end up playing varsity senior year. We were really bad but I did play varsity and I was not the worst.

M: That’s huge!

W: Yeah. There was sports and there was video games. That was another one. My (younger) brother is absurdly good at video games. So, whenever we would play anything, I would get my ass kicked because when we would play just us, he would be better by default and when we would play online, it would always match towards (his skill level). And so, I had a long time where I just didn’t like video games even though I love and appreciate them so much as a medium. And it kind of took me going off to college and playing some games on my own to be like “you know what, I can do this.”

M: Because, for your age group, “gaming” is a real common occupation. It’s a social avenue and a leisure avenue.

W: And I love anything computer related and it was really hard early on. What video games taught me more than anything was the value of persistence. Like with Disney, when I watched the (ride) videos for fun and not even consciously realizing that “hey, this is preparing me for something.”

M: It seems that we return again and again to these examples of strength and resiliency.

W: Intrinsic motivation.

M: Yes, (laughs). It’s more than that, though. People can be intrinsically motivated but you, you have a lot of strength. The fact that you persist is a major part of you.

W: One thing I have learned in this world is “get knocked down seven times, get up eight.” It isn’t about who gets it done first, it’s about getting it done.

M: Do you feel that has to do with your experience with SPD?

W: Yeah. You know that they use that horse (bolster swing) that is suspended from the ceiling (in the clinic)?

M: Yes.

W: I always say, never has the saying “get back on the horse” meant so much. I remember trying and trying and falling and falling.

M: All of these stories have this common thread of how you were thrown more obstacles than maybe your peer group was and yet you still, because of intrinsic desire or personal vendetta, pushed through what would be debilitating for a lot of people.

W: And it’s not that I didn’t give up—because I did several times. But you have to ask for help. I had a friend who would play with me and he was so good at these particular video games and he would tell me, “every time you die, figure out what happened and don’t do it again.” Whereas, in the past especially with my brother, it felt like… I mean, we were playing first person shooters which are twitch reactions and if you don’t know what’s going on instantaneously, you’re dead before you can change anything. It became this different sort of learning process. I actually ended up beating the second to last boss on my first try.

M: That also speaks to one of your other strengths. You have a lot of cognitive abilities. A lot of people with SPD have to use their cognition to override their coordination issues, or problem solving or they even try to override that “ahh” feeling (mimics Woody’s hand shake from earlier).

W: The way that I would describe it is when something was going wrong, my brain had a plan and it was going to do that plan no matter what. Even if that plan was no longer viable. And it was learning to kind of recognize the situation and not just keep doing the same thing over and over again.

SPD and Relationships

M: You made mention of a friend. I want to start bringing relationships into this discussion. Do you feel that your SPD affected your relationships? How you made relationships? Who you made relationships with? What kind of relationships you had?

W: I tend to be very “huggy.” I tend to be a very physical person. So that can be kind of off-putting to people if they don’t understand where its coming from. Some people are ok with it. One person came up to me and she was like “hey it’s so good to see you” (and hugged me) and I was thinking “oh I’m sick I shouldn’t be doing this” but I almost did it by default and ended up hover hugging (mimes hugging without strong contact).

M: Do you feel like when you were a kid that you were drawn to more physical kids, then? Or quieter kids since you were sensitive to sound?

W: I was always drawn to kids… like my friend Morgan and I would sit at the picnic table on the corner of the playground and we would pretend it was like a giant super computer. I was drawn to… the more imaginative side of things.

M: You were drawn to kids that could keep up with you in terms of imagination and maybe weren’t making motor demands?

W: I was a talker… I wasn’t a mover.

M: You wanted the kid that could play super computer but not the kid that said, “hey let’s go kick a ball around and play some soccer.”

W: Exactly… Soccer was… a disaster (laughs). I tried soccer once and… I do not remember it this way. I remember calmly walking up to my parents and saying “I don’t want to do this anymore.” But apparently, I ran over (to them) screaming.

Sexuality Self-Discovery

M: I want to talk about when you became aware of your own sexuality. Was that something... from your memory, when did that start occurring for you?

W: The first memory… I was always… I don’t want to say flamboyant but I… I will commit to anything 100%. There’s this video of my brother and me dressed as the Cat in the Hat and I was like “I’m the Cat in the Hat! Who’re you?” And Lucas was like “I’m... Lucas.” And I was like “WELL I’M THE CAT IN THE HAT!”

M: So, you had a flare for dramatic?

W: That is a good way of putting it. The first memory of the word “gay” popping into my head was when we were sitting at Chili’s and some girl… this was like in fifth grade… allegedly started a rumor that I was gay. Initially I brushed it off like “No, no of course not.” But in my head, I was like “Oh god. She’s right.” It took... I didn’t come out until I was two weeks into college. It eventually got to the point where it was like “I can’t keep this a secret anymore. I just don’t know how to deal with it.” I… I hadn’t… I wasn’t the typical gay kid. Some of this relates to my SPD. I dress like this (gestures to his t-shirt and sweat pants) on most occasions. I wear sweat pants and T-shirts and jeans. Because that’s what’s comfortable. I don’t… I’ve always been the kind of person... it’s not what you look like. It’s not how you dress. It’s not necessarily the first impression, it’s what can you bring to the table. And that’s always the way that I’ve thought. Sometimes I wish the world thought a little more like that. So, I didn’t have these really typical markers. And I wasn’t... I wasn’t into fashion. I was a writer. Because of my fine motor skills, I was never an artist. And acting was fun but… but I think almost as a defense mechanism I almost strayed away from it. Which… I don’t regret anything but it’s still… yeah whatever. You were just kinda doing what you wanted to do instead of what you felt like you had to do.

M: You’re talking about when you went to college and where you put your focus?

W: Not college. This was in middle and high school. That was a really weird time because I had these conflicting signals. I’m a nerd. I like video game and computers... and I didn’t explicitly like boys but there were some times (hind sight being 20/20) where you’re like “yeah, no you didn’t just think they were great athletes…” But I was just... I just had these conflicting signals. And anytime that you’re different, it isn’t necessarily a strike against you but it is something that you have to overcome if you want to be a happy person. You have to be okay with the fact… with your differences.

M: You have to accept yourself.

W: And I was... I was never like the other boys. Never. And especially when I got to high school, that started to hurt a little bit. Because… I went… I went to a very small school. My graduating class was 76 kids. So I found myself trying to fit into this mold of… being somebody... trying to fit the mold of the typical...

M: In the group.

W: Yeah. Fit into the group. I… it took so much… I wanted to not be the different one and it inevitably back fired and I was the… I was kinda the... I’m prone to these awkward social situations where I kind of… cross the line. And also, I have really bad anxiety and really, really bad social anxiety. I also have a fantastic memory so I remember every little weird mistake so it’s like… “OK. So, everyone hates me.” That’s the mental image that I’ve got right now. And… I can’t be mad about it because… did it suck at the time? Yes. But everyone has times in their lives where things aren’t perfect. It wasn’t like I was miserable. While I didn’t get along with the kids as much, I got along with the teachers and professors. Like I would stay after class. Ms. Myers, she taught physiology, and we would just talk about music and all sorts of things.

M: You found that was a better match.

W: Yeah. And that’s something that extends to me now. Like my partner is 27 years older than I am. He’s like retired army... and we’ve been together for four years now. And most of my friends... tend to be older. They tend to be more the 40’s-50’s side rather than the 20’s-30’s side. I haven’t always identified with kids like that. And I have a few exceptional friends that are my age now.

M: That’s who you gravitated towards.

W: That’s who I gravitated towards. And I don’t know… maybe because I’m a little more emotionally mature than kids my age. Maybe because I’ve been… I’ve had a set of experiences where I don’t necessarily get along with kids my age. Because, kids my age tend to have significantly different interests than me. They’re catching up a little bit now since I’m in my mid-20’s.

M: I think it’s very interesting, you talked about what you wear. I think you used the term “markers” around, at least what your perceptions of, what a gay man would dress as or be into. You didn’t feel that you were meeting that perception, and maybe that was part of the confusion?

W: Yeah. And it like… didn’t happen until right around 2012 where... for example… I don’t know if you ever saw the show “Happy Endings.” Well there was a character. A gay character that did not present as “typically gay.” It wasn’t, it didn’t have that sort of...

M: Parody?

W: Yeah parody aspect of it. Like when I was a kid, I grew up watching Family Guy and American Dad and those are just… not great shows for that kind of …

M: Yes. Those are inflammatory shows for a lot of things.

W: This might actually be a relevant experience to this. I… the way that my coming out happened… I was watching “It Gets Better” videos on YouTube and I came to the Google one because Google did one. And there was one guy in there who, he… he was wearing like a college T shirt and... he didn’t present in the typical…

M: He looked straight?
W: I don’t want to say that he looked straight because I don’t like that terminology but… it was different from the perception that I had. Umm... and I actually wrote a little comment saying “I wish I could thank this guy.” Right after that, I put my parents on a conference call and told them I was gay.

M: So in that video... it turns out that he’s gay?

W: Yeah. Everybody in that series was LGBT. The fun part about this story is that I checked my messages on YouTube and he had actually written me back.

M: Wow! What did he say?

W: He was just like, “I was scrolling through the comments.” It’s usually just a bunch of inflammatory crap because YouTube comments are awful. And he saw my comment and said “I’ll send you a T-shirt or whatever. I’m so glad that I could help you out.” He actually sent me... they had these little android guys and they were holding hands and one of them was holding a little pride flag up. I cannot find the shirt. I think it got lost in one of my moves but it was… that was such an impactful experience for me. It was one of those few moments… ‘cause I’ve always been on the internet. The internet is where I grew up. I spent all my time on forums, websites. When social media first began, I was one of the first people to jump on that.

SPD and Sense of Self

M: For you, do you think there are any tie-ins between SPD and who you are now? Not just your sexual identity, but all aspects of you.

W: The way that I’ve always thought about it is that SPD has always been a part of me whether I have been conscious of it or not. And in the myriad of little decisions that each of us make every day… looking back, I can see how the SPD has affected some of those decisions and affected the way that I have kind of put myself out in the world and how I live.

M: Can we discuss that a little bit about that? About how you put yourself out in the world? Like I’m thinking of… I don’t know about how you maybe met your partner or previous partners or anything like that. My guess is that as someone with SOR, you’re not going to go to bars or loud places. Like that might not necessarily be your scene.

W: Oh god. Yeah. I’ve been mistaken for straight at gay bars. I don’t know how… well I know how I do it. I just kind of stand in the corner shaking.

M: Because of the sound?

W: The sound and the social anxiety. Sound has been become one of those things… It’s almost like… you know the saying that “a frog won’t hop out of a pot if you raise the temperature slowly.”

M: Yeah, you can acclimate.

W: I actually acclimate to sounds very well. And if it’s a song that I know and I know when it’s going to start and what’s coming, I love it. I used to love… in junior and senior year, I was really into electronic music and I went to a lot of Red Rock concerts. Admittedly, it was a lot to process but it was also… it was an experience… I was fascinated by the light shows and how much work goes into them because they were big and elaborate. I’ve always been a very sensory person at least in some regards. I love experiencing things. I love… whether it’s going on YouTube, going to Disneyworld, or concerts, I love new information. I love pushing my own limits because if you don’t, you’re gonna be stuck in the same place for the rest of your life. Nobody wants that. I want to grow and expand as a person. There are still limits that my SPD poses and I know that I will never be a professional athlete, but I don’t want to be running scared. It’s almost embracing… I don’t want to say pain… but discomfort or challenge. Just being able to learn and expand and push my boundaries. I think that’s something that having SPD, and going through the treatment model, instilled in me. The desire to push things and conquer my fears.

M: That you were safe to do that.

W: Safe to do that, yeah. The one fear I will never conquer is my fear of taxidermy.

M: That’s normal! (laughs) Has the SPD impacted your living with a partner versus living with a parent?

W: I think a little bit easier. Like he is… Mike is very like… he was in the Army for 20 years. He fills an entire closet with his own clothes. He’s very much my opposite in a lot of ways so it can be frustrating when… I do things… like it took me forever to kind of calm down and say, “you know what? I can dress nice once in a while. It’s not going to kill me.”

M: That’s one of those challenge areas?

W: Yeah. It’s the restriction of the clothes. It just drives me crazy. So it’s learning how… I’ve had to learn where sensory issues cause challenges with my partner and address them a little bit. I’ve had to do that with my anxiety. I’ve had to do that with… just being a 24-year-old dating at 51-year-old. There are inherent challenges to being with another person and my challenges are sometimes different from what other people face.

M: I like what you’re saying: Has my SPD created challenges in my relationship? Yes. Everybody has challenges in relationships. Some of my challenges happen to be around my SPD but not all of them.

W: I’m sure that if we talked for another hour, I could come up with another dozen examples. Again, it’s so entrenched in your brain... it’s not always apparent what’s causing the issue.

M: Like what you said, “I don’t have a conscious memory of these. They’ve always been a part of me.” There are times where you aren’t going to be able to see it.

W: I think we mentioned this the last time we talked. Whenever I get overwhelmed, I turn into a bit of an asshole. I just… I become antagonistic. It’s just my sensory…

M: It’s overload.

W: And what I’ve kind of had to learn to do is recognize the moments and sequester myself because I don’t want to say anything to hurt anybody and I know that I will and I won’t really mean it.

M: No because, you’re having a physiological response and its coming out in a behavior… it’s being prompted from this over-arousal…

W: It’s like electricity… I can physically feel it.

M: Now that you know that, you can identify it.

W: I struggled with that for a long time because I was like “I can say some really horrible things.” And it never occurred to me that SPD could be a factor for that.

M: Isn’t that incredible? Thanks so much for taking the time to talk with me and sharing such personal parts of your life with us.

If you are looking for SPD treatment for yourself or your child fill out a child or adult intake form now to be treated at STAR Institute Treatment Center or search our Treatment Directory to find services in your area.

Mim Ochsenbein, MSW, OTR/L has been a practicing pediatric occupational therapist for over 20 years. She has received advanced training in sensory processing (STAR Institute Intensive Mentorships, SIPT certification), listening therapy (Therapeutic Listening), feeding therapy (SOS) and infant massage (CIMI). Mim received her MSW in 2012. Her work with children and youth has occurred in a variety of settings including early intervention, school based, clinic based, mental health and private practice. In her role as STAR Insitute’s Director of Education, Mim creates and teaches STAR Institute trainings, oversees SPD University, and provides educational programming and resources for clients and families.

by Mim Ochsenbein, MSW, OTR/L

Intervention

Relationship Focused Sensory Treatment: We Shouldn't Just Treat Individuals

STAR Admin — Thu, 05 Apr 2018 21:35:43 +0000

Relationship Focused Sensory Treatment: We Shouldn't Just Treat Individuals STAR Admin Thu, 04/05/2018 - 21:35

I’m Carrie Einck and you know me from the STAR Institute videos on Sensory Processing Disorder (SPD) for adults and teens. Today, I’m sharing my story of what drove me to work with families dealing with Sensory Processing challenges and how I address sensory challenges in my own life.... (BUT don't forget to read Sarah's story too!)

I first learned about sensory processing in my occupational therapy graduate school courses. I remember the moment I learned that there were more than the five senses I had learned in elementary school. It was this “aha” moment, both personally and academically. Learning about the additional three senses (proprioception, vestibular, and interoception) helped make sense of why some of my hobbies (running, yoga, etc) were so beneficial for me. It also helped me learn about the “just right” arousal in order to study for quality instead of quantity. As I have studied and worked in settings where I assess and treat sensory processing concerns, I continue to learned and refine what my own sensory profile is. In general, I have learned that I seek olfactory (smell), proprioceptive, and vestibular inputs. I can accomplish this daily through using essential oils and also through the movement I receive treating individuals in the sensory gym, as well as, incorporating my own movement into my daily routine. I have found that rebounding, stretching, yoga, and running tend to have the most benefits toward my arousal. Contrarily, I tend to be somewhat sensitive to visual and auditory input. I have learned that I am more sensitive on some days than others, but my best supports for this are using natural/lamp lighting in my home and work spaces, wearing sunglasses when I am outside, and limiting the amount of time I am in noisy spaces.

Learning what best supports me now has led me to ask questions about what I was like as a child. To no surprise, I was the child who loved spinning myself quickly on the backyard swing, climbing all over every piece of furniture from the moment I could crawl, and always asking people to be quiet when I was sitting with them at mealtime. For me, this helps validate that sensory processing is lifelong and that strategies do work. By staying attuned to my own sensory preferences and challenges, I can better emphasize and strategize with my clients. I find that when my equilibrium is thrown off by lack of sleep and/or sickness, all of these sensitivities become heightened. I begin to imagine that these feelings may be what some of my clients may be feeling on an everyday basis.

I think my desire to work within the Sensory Processing Disorder (SPD) population stems from that initial “aha” moment I had in graduate school. Sensory processing makes sense for me on a personal and professional level. I have seen sensory-based interventions change lives and bring joy for the first time to entire families. Getting the opportunity to help create a program at STAR Institute for adolescents and adults with SPD and their families has been life changing to me. It is a service that has rarely been available for them in the past. I have seen how powerful it can be even after 30-40 years of no intervention. I believe it has saved lives, marriages, and relationships between parents and their child/ren.

I was led to work at STAR Institute when I learned the model was focused on entire families and relationships, not just one individual. I have been able to listen and work with moms, dads, siblings, spouses, and significant others, as well as, the individual. I find this so very important. When I was just starting elementary school, I learned that my younger sister was diagnosed with a chromosomal condition called Turner Syndrome. I remember the time my family got this diagnosis. It was scary and shocking all of us. As an older (but not very old) sister, I felt confused. I remember instantly feeling that it would be my role to be brave and helpful in any way that I could. I remember asking my mom what I could do to help and neither of us having any tangible solutions. Later on, my mom would go on to tell me that the doctors told my parents to “treat her as any other child and she will be fine.” The thing is, that this condition does change things for her and for our whole family. She would go on to receive daily painful growth hormone injections that led to very frequent meltdowns, panic, and fear from everyone in the family. As time passed, she developed differently emotionally, socially, and physically. As a sister, I continued to take on my role of learning what I could, trying to give the advice I could, but more importantly trying to be the strong and (hopefully) helpful one.

Reflecting on that experience, I wish that a family like mine could have had a relationship-based professional validating and helping our family system. These services are few and far between, but even the littlest bit of validation and understanding from a professional can go a long way. I hope to help entire family structures have the validation and understanding that neither me nor my family had throughout my childhood. I hope that I can be someone who can let families know that getting help and understanding can be pivotal not just for the individual, but for the entire support system around them. I am grateful for all the practice I have had in helping, empowering, and learning about myself as well as the neuro-differences we all have that makes each of us unique. It has helped me really understand, grow, and sit with each of the families I work with here.

If you are looking for SPD treatment for yourself or your child fill out a child or adult intake form now to be treated at STAR Institute Treatment Center or search our Treatment Directory to find services in your area.

Presented by adult SPD specialists, Carrie Einck, MS, OTR/L and Sarah Norris, MS, OTR/L who have spearheaded STAR Institue's renowned adult and adolescent treatment program.

Carrie Einck OTR/L

by Carrie Einck

Intervention

My Life Path with Sensory Processing

STAR Admin — Thu, 05 Apr 2018 20:54:54 +0000

My Life Path with Sensory Processing STAR Admin Thu, 04/05/2018 - 20:54

I’m Sarah Norris and you probably know me from the STAR Institute videos on Sensory Processing Disorder (SPD). Recently, we’ve been asking the adult SPD community to share their sensory stories with us so we can create more community and awareness for all. Today, I’m sharing my story of how I’ve chosen this career and how I address sensory challenges in my own life.... (BUT remember to read Carrie's story too!)

As an occupational therapist, I have gradually become aware of my own sensory processing challenges. As a kid, I was labeled a tomboy, and that pretty well captured my sensory profile. I hated “girly” clothes, loved to play in the dirt and mud, climbed trees, and even broke my collarbone playing rugby with the guys in sixth grade.

As a teen, I was labeled a geek, and that captured me pretty well, too. I loved reading, writing, math, science—everything except history. I was an athlete, musician, in drama, and always, always busy. I attended small private schools and did really well. I was able to explore all my interests with the level of intensity I craved.

Then, college happened. I made it through, but it was a big adjustment and so much harder than high school. The schools I went to for college were too big to know everyone. In fact, I knew almost no one, and didn’t know how to “put myself out there” to meet people very easily. The cafeteria was massive, loud, and always stinky. Assemblies and most of my lecture classes were overwhelming.

I shared a room for the first time since childhood (with a stranger, no less), and my go-to strategy of “escape to regulate” didn’t work. I no longer had a “sensory safe space.” It didn’t help that I really hated my roommate’s musical preferences. I poured myself into my studies, gave up on making friends, and just got through it. I holed up in my dorm room when my roommate was gone, then left for the library or my boyfriend’s apartment when she was around. During that period of time, I was diagnosed with depression, and looking back at that time, it’s no wonder I was depressed. I started counseling and taking medication, which helped me some.

Another layer to my story is that my mom was diagnosed with brain cancer when I was seven. She had a tumor in her frontal lobe that was the size of a man's fist. She underwent brain surgery followed by aggressive chemotherapy and radiation treatments. Doctors did not anticipate her living beyond six months, but she ended up living for more than 20 years after her surgery and subsequent treatments. She was the first survivor for the kind of brain cancer she had. While she was a medical miracle, she was forever changed by her disease. She never returned to "normal."

At the time, doctors had very little understanding about the long-term effects of her cancer and the treatments they used on her. They did not know what to tell my family to expect, nor did they know what supportive services she/we needed. No one really knew. As you can imagine, living with someone who has significant neurological damage had its challenges, not only for me, but for the rest of my family as well. My family and I were fortunate to have many wonderfully supportive people in our lives, but nothing could "fix" my mom or the vast disruption in normalcy her disease caused in our family.

I've done a lot of counseling and worked through a lot of big emotions around losing my mom; once at seven, and again, for good, at 29. The silver lining of all this has been the heart this experience has given me for all people with disabilities, especially those with neurological conditions. I believe growing up with a disabled parent is one of the biggest factors that led me to becoming an occupational therapist.

As an adult, I’ve really poured myself into my job, marriage, and kids, and I really love my life. But I have also experienced a lot of imbalance and have struggled to take care of myself along the way. I’ve done a lot of counseling, read a lot of self-help and therapy process books, and tried various medications. I’ve been diagnosed with fibromyalgia and an anxiety disorder. I’ve worked for years to understand myself and learn to take care of myself.

Being an adult is hard. Most days I cannot believe I am actually considered an adult. On my good days, I consider myself a “highly sensitive person.” On my “sensory” days (where I’m easily overwhelmed and triggered by my sensitivities), I fall more squarely in the Sensory Processing Disorder camp.

My sensory challenges (and those of my children) have honestly made it kind of hard for me to figure out what is normal and what is dysfunctional. Luckily, I work with some really amazing people who help me figure it out as I go. Because of my knowledge about sensory processing, I am pretty sensitive to my kids' sensory needs. They definitely inherited some sensory processing challenges from me. I’ve also noticed my knowledge of sensory processing differences has really helped me understand points of conflict and differences in opinions and preferences between myself and my friends and loved ones. I've found the knowledge of sensory processing (and neurological differences in general) has made me way more understanding and open to others' perspectives than I was before I knew about it.

Here is what I have figured out about my sensory profile so far: My biggest challenge is my over-responsiveness to sounds. The sounds my kids make (especially crying, whining, and screaming) and background conversations are especially challenging for me. I get visually over-stimulated by fluorescent lights and clutter, so grocery shopping is really challenging for me, especially in unfamiliar stores. I react strongly to smells, both positively and negatively. Certain smells really soothe me, but perfume can give me headaches. I am sensitive to light touch and can over-react to being touched unexpectedly, but I love deep pressure touch, fidgeting, and really hot showers. I hate crowds and almost always have a meltdown or migraine during/after professional conferences. I am under-responsive to my bodily sensations, including vestibular (movement), proprioceptive (position), and interoceptive (internal bodily sensation) signals. I have bad posture, need to move frequently to stay awake, keep from getting stiff and sore, and to recognize when I am hungry, thirsty, or need to use the bathroom. I have joint laxity/low tone and get injured easily, especially in my lower back, knees, and ankles. When I am still for too long, I don't pick up on my body signals until they're really strong (like "there's no way I'm making it to the bathroom" strong; pregnancy/birth has NOT helped this challenge).

One huge benefit of my job is that I have amassed a huge volume of information about sensory processing. I’ve found a lot of helpful strategies to overcome my sensory challenges. Some of them are more functional than others. For example, to manage my sound sensitivities, I constantly tell my kids to be quieter, use their inside voices, or that what they are doing is bothering my ears. I use noise-canceling headphones or earplugs often. I keep some high-fidelity earplugs in my purse because I need them anytime I'm shopping, in a busy restaurant, in movies, or at concerts. I've found music and auditory input really affects my energy level. I use brainwave music, guided meditations, or playlists of my favorite artists/songs to help wake me up in the morning, focus at work, drown out noise when I'm shopping or traveling, and calm me down so I can fall asleep in the evenings. My kids know if they want to listen to songs with lyrics in the car with me, they cannot also talk, or I turn the music off. I like background music during dinner, but it can't have any lyrics. I almost never have my phone ringer on and snooze my alarm immediately when it goes off (all 3-5 times). I prefer to read subtitles or transcripts for videos and almost never have the sound on for video games (or if I do, it's at the lowest possible volume). I cannot process very much auditory information without also fidgeting, taking notes, and/or seeing things in writing.

To manage my visual sensitivities, I have taped over everything in my bedroom that emits light with black electrical tape, do my best to conquer clutter in my house (it's SO HARD with kids), and try to get outside in nature at least once a day to soak in some natural lighting and nature scenes. I have an alarm clock with a daylight/sunrise function that turns on about 30 minutes before my sound alarm that helps me wake up in the morning (since I don't let my alarm go off long enough to wake me up). I keep three different kinds of tinted glasses in my purse; sunglasses, "computer" glasses that block blue light, and blue tinted glasses that make driving at night or being in a place with a lot of fluorescent lighting tolerable. My office mates and I never use the overhead fluorescent lights in our office and use lamp lighting instead (I am so fortunate their visual systems are similar to mine).

Things I have found that support my responses to smell are largely related to the environment I am in. In my office, no one wears perfume/cologne or uses strongly scented body products. I personally use unscented or naturally scented products for washing my clothes, cleaning, and bathing. I love essential oils and have a pretty big collection of scents that I use for a variety of purposes. When I am not in a supportive environment, I tend to breathe shallowly because it protects me from getting big whiffs of unpleasant smells.

As far as touch goes, I have always loved big, long, tight bear hugs. Weight, pressure, heat, and vibration are hugely calming for me. I have a 20-pound weighted blanket that really helps me relax and unwind. I have a cat who loves to lay on my chest and purr loudly - it's the best thing ever. I usually enjoy snuggling with my kids or husband, although sometimes I can't handle it. My husband has learned he cannot touch me without warning me and getting permission first, especially if I'm immersed in a task and don't see it coming (I may have hurt him and/or his feelings more than once). I take super-hot showers and constantly turn up the heat to cancel out the sensation of the water droplets on my skin. I tend to dress in layers and keep blankets handy because I do not like being cold or being touched by anything cold (another thing my husband has learned to put up with my over-reactions about).

As I mentioned before, I use sound, visual input, smells, and touch input to help me regulate. I also rely heavily on caffeine, chewing gum, and video games. I struggle with being motivated to get up and move, especially when I'm really focused on a task, but man, does it make a difference. I have a smart watch that reminds me to get up and move every hour if I haven't, which really helps me remember to at least get out of my chair and stretch, go to the bathroom, or get a drink of water. I am really lucky to work in a profession where swings and large exercise balls are readily accessible, because they are really helpful in bringing me out of an energy slump quickly. I also rarely get to stay in one place for long in my job, which is great for me. I really enjoy exercise when I get around to doing it (as long as I don't overdo it, which is another thing I struggle with). Running, swimming, yoga, pilates, and high intensity interval training work well for me. I've found that making a rule for myself to get out of the house every day on the weekends, at least once, makes a huge difference for me, too. I tend to be overly sedentary and it is not good for me for so many reasons. I have three different kinds of swings, two exercise balls, and a rocking chair at home that have helped me cope with a rough day more times than I can count.

Working at the STAR Institute for SPD has deepened my understanding of sensory processing and all the different ways it impacts all of us in all of our different states of functioning. I think the STAR Process is so effective because it recognizes the widespread reach that neurological differences have on a person's life, and that the impact spreads far beyond the individual. The STAR Process beautifully combines the scientific basis of how sensory integration works with addressing the relationships and mental health factors that surround and complicate SPD. It's a strengths-based model that focuses on what an individual CAN do, not on what they cannot do. The intensive model helps disrupt habits and behavior patterns that get in the way of clients making progress and identifies supports and strategies that can get them back on track with growing, improving, and feeling good. I've seen this approach not only give people hope, but empower and transform their lives. It's a beautiful thing.

If you are looking for SPD treatment for yourself or your child fill out a child or adult intake form now to be treated at STAR Institute Treatment Center or search our Treatment Directory to find services in your area.

Presented by adult SPD specialists, Carrie Einck, MS, OTR/L and Sarah Norris, MS, OTR/L who have spearheaded STAR Institue's renowned adult and adolescent treatment program.

by Sarah Norris

Parent experience