Sensory Processing Disorder

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

Dr. Lucy Jane Miller Announces Retirement

akronberg — Wed, 02 Oct 2019 14:51:54 +0000

Dr. Lucy Jane Miller Announces Retirement akronberg Wed, 10/02/2019 - 14:51

Following a 45 year career in the field of research, education, and treatment of Sensory Processing Disorder (SPD), Dr. Lucy Jane Miller announces her retirement from her position as Founder and Executive Director at STAR Institute for Sensory Processing Disorder, effective October 1, 2019.

Dr. Miller’s name is synonymous with sensory research, education, and treatment as she and her team have worked towards widespread recognition of SPD. Due to Dr. Miller's mobilization of the research community, SPD now appears in two diagnostic manuals: the ICDL's Diagnostic Manual for Infancy and Early Childhood and The Diagnostic Classification: Zero to Three. Her 14-year process of applying to have SPD included in the latest revision of the Diagnostic and Statistical Manual (DSM-V) 2013 resulted in sensory characteristics being included for children with autism. In addition, she has written and published 10 nationally standardized norm-referenced tests that screen for developmental disorders and provide diagnostic assessment of various domains of function.

Among her long list of career achievements Dr. Miller founded the first comprehensive SPD research program nationwide and authored two groundbreaking books, Sensational Kids: Hope and Help for Children with Sensory Processing Disorder and No Longer A SECRET: Unique Common Sense Strategies for Children with Sensory or Motor Challenges.

Dr. Miller’s legacy will be carried forward by STAR Institute’s new Executive Director, Virginia Spielmann. Virginia is a founder and former Clinical Director of SPOT (Speech, Physical, and Occupational Therapy) Interdisciplinary Children's Therapy Center in Hong Kong, where she led a large and widely respected inter-disciplinary team. "As we move forward at STAR Institute, Dr. Miller’s legacy will take us into 2020 and beyond with more potential for the field of sensory processing than ever before. Dr. Miller has handpicked an outstanding team I am delighted to now be part of,” says Virginia Spielmann, Executive Director at STAR Institute.

Also appointed by Dr. Miller are Andrea Stoker, Chief Operations Officer, Dr. Sarah Schoen, Director of Research, and Mim Ochsenbein, Director of Education who continue to bring the vision and mission of STAR Institute into the future. “The field of sensory processing has come a long way in the last forty years, but as STAR Institute moves into this new phase of leadership there is still far to go before everyone with sensory processing challenges is provided the support they need to thrive. I’m confident the team I have handpicked will carry on my legacy and continue to be innovators in the field of sensory processing through cutting-edge treatment, research, education and advocacy,” says Dr. Miller.

Donations can be made directly to the STAR Institute non-profit as a way to honor Dr. Miller’s legacy and to ensure that her progress continues to live on through this important work. Click here to make an impact in Dr. Lucy Jane Miller’s name.

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.

Navigating the Limits of Special Education

STAR Admin — Mon, 29 Apr 2019 20:22:10 +0000

Navigating the Limits of Special Education STAR Admin Mon, 04/29/2019 - 20:22

My daughter was three years old when we made our first trip to STAR Institute for Sensory Processing Disorder. The staff’s appreciation and awareness for both the subtle and overt challenges she faced brought us back to Denver from Northern California three more times for therapy, testing, and treatment. With each visit we took away something new and constructive to help our daughter find peace in the midst of the brain-body conflict of her non-typical sensory processing abilities.

Many parents and children struggle with the transition of early intervention services to the school based system of identification for services at age three. For many reasons, large percentages of children lose access to public services during this transition time. Even if a child remains identified, the level and type of services can be drastically different than they were during those first few years.

The absence of Sensory Processing Disorder from the DSM further complicates matters for parents who are grasping for any form of proof to show their school district why their child needs the ongoing help; especially as the child now has to cope with integrating academic demands into their life. Dwindling regular education and special education budgets only exacerbate this problem.

Focusing upon the functional outcomes of your child’s disability can sometimes be an effective strategy when engaging school district personnel. At home, parents learn to minimize or mitigate stimuli that can be noxious to their child, but in schools, it is frequently unavoidable. Successfully asking a public school to reduce the amount of sensory triggers for your child can be incredibly difficult. Parenting a sensory child requires ongoing and creative advocacy. Unlike private or early intervention services, simply describing what your child struggles with to a school may not be effective. Semantics and delivery matter – put the focus upon the academic access and outcome issues as they relate to how your child processes the world.

If you are unsuccessful on a personal level with your child’s teacher and administrators in getting the help that your child needs, the only obvious options for families seem to be to simply agree with whatever the school is, or is not, doing for your child; or to engage an advocate or attorney. The former puts your child at risk for emotional and developmental harm, the latter will almost always frame you as confrontational or difficult parent. An often overlooked or unused avenue to explore is the use of political pressure and leveraging the human connection.

Just about every school district is overseen by an elected board of trustees. It is the school board’s responsibility to represent the public’s interest – they are not employees of the school district. Children in special education represent 13% of the national public school student body. The CDC estimates that the number of disabled children is higher (reporting that one out of every six child is disabled). Special needs parents represent a large block of the voting and tax paying public, yet we often are underrepresented. Some ways to advocate for your child in a manner that can be viewed as less confrontational by your school district could be to:

Ask for some face time with one, or several, of your school board members to discuss your concerns. (Your school board members’ contact information should be publicly posted on your school district’s website)
Ask to be on your district’s parent advisory committee for special education. And if there is not one, form one. (There should be a link on you school district’s website, if not email your superintendent directly)
Form a special needs/special education parent teacher organization. This can put teachers, administrators, and parents into a different social situation that allows for all parties to see each other as cooperatives not competitors. (More information on how to start a PTA can be found here: https://www.pta.org/home/About-National-Parent-Teacher-Association/join/start-a-pta. More Information on how to start a PTO can be found here: https://www.ptotoday.com/pto-today-articles/article/837-how-to-start-a-pto)
Organize similarly situated parents in your community and present your concerns at a public school board meeting. Ask to have special education placed on a formal school board agenda. (Your school district’s website should provide you with contact information for your superintendent, director of special education, and school board members)
Run for school board yourself and make special education your platform. (Filing practices and timelines will vary depending upon your municipality, contact your city offices for more information about how to get on the ballot)
Engage your local newspaper to report on special education related issues and get special needs families to write letters to the opinion/editorial section of the paper describing the difficulties they have had with appropriate school based services. (Check with your local paper for contact information)

At the end of the day, potentially the most effective method of driving change in your district is to get the topic of special education discussed openly, honestly, and in a public forum. For far too many families the issues we face get trapped inside the walls of IEP meetings and parent-teacher conferences. Once administrators and elected officials begin to discuss the shortcomings of special education in the public space, a large portion of the ownership and burden of that imperfect system is lifted from your shoulders and placed upon theirs.

Aaron J. Wright is a Family Nurse Practitioner and the Trauma Program Manager for a Level 1 Adult and Pediatric Trauma Center. He is also the author of Daisy Has Autism and runs the website www.daisyhasautism.com. He and his wife have two children and live in the San Francisco Bay Area.

By Aaron J. Wright RN MSN FNP-C

ADHD

Occupational Therapy

Sensations: Too Much, Too Confusing, or Not Enough?

STAR Admin — Mon, 01 Apr 2019 19:57:21 +0000

Sensations: Too Much, Too Confusing, or Not Enough? STAR Admin Mon, 04/01/2019 - 19:57

Sensory processing challenges appear in a variety of ways...

What is the matter with Mary Jane?

She’s crying with all her might and main,

And she won’t eat her dinner—rice pudding again—

What is the matter with Mary Jane?

A.A. Milne’s poem about miserable Mary Jane used to mystify me. As a child, I knew that not everyone loves rice pudding, but I wondered why she was having a tantrum. Couldn’t she say, “No, thank you,” and then just get over it?

Now that my older eyes are open, I’m more sympathetic. Evidently, Mary Jane can’t communicate to her grownups that she hates rice pudding. Maybe she’s two, so she behaves like a two-year-old. Maybe she is full. Or—what is now my go-to answer—maybe she has Sensory Processing Disorder (SPD), which makes “just getting over it,” all by herself, difficult or even impossible.

Like Mary Jane, some children withdraw not only from grainy or odd-textured food, but also from physical contact. They may refuse to participate in experiences that other kids enjoy, communicate ineffectively, and respond in unusual ways to ordinary sensations of touch, movement, sight, sound, smell, and taste. These kids may have SPD, so they don't behave as we expect—not because they won’t, but because they can’t.

SPD is real—and it’s common, affecting about 17 percent of children and adults. SPD begins as a physical condition but may later develop into a psychological condition; if underlying sensory issues are ignored, a little kid often begins to feel shame, low confidence, rage, and loneliness.

Sensory processing is what everyone does, all day. Sensory messages come in through receptors near the surface of, and deep within, the body—the skin, eyes, nose, mouth, outer ear, inner ear, muscles and joints, and internal organs.

For a typical person, the central nervous system efficiently processes the incoming sensory information so she can use it to yank her hand from a scorching frying pan, pull the right boot onto the right foot, or catch herself before she trips.

But for an atypical, “out-of-sync” person with SPD, an inefficient central nervous system garbles sensory messages—meaning that he can’t use them to function smoothly in daily life. He burns his hand on the pan handle; he mismatches his boots and feet; he stumbles and falls.

The most common and easily observed SPD issue is over-responsivity. Over-responsive kids may be provoked by an unexpected touch, lumpy sock, speed bump, siren, fluorescent light, scented crayon, rice pudding, and so forth.

But though this is SPD’s most common outward presentation, not everyone with the condition has over-responsivity. In fact, children or adults with SPD may not be bothered by sensations at all and may seek more, not less stimulation. Many of these individuals have less obvious types of SPD—these can look like ADHD, Oppositional Defiant Disorder, or other psychological issues in the DSM-V.

What is the matter with Mary Jane? SPD may be—or it may be exacerbating—the main problem. Put on imaginary “sensory spectacles” to examine the situation and ask yourself, "What sensations are too much, or too confusing, or not enough?"

Here are possible reasons for Mary Jane’s behavior:

Sensory over-responsivity. Sensations threaten her. She sees and smells the dessert and anticipates how disgusting it will feel and taste in her mouth. Her sensory systems say, “If you eat it, you’ll die.”

Poor sensory discrimination. Sensations confuse her. She may be unable to discern textural differences between grainy rice and smooth pudding in her mouth. Even if she likes the flavor, rice pudding may make her gag.

Sensory craving. Ordinary sensations are insufficient. She needs constant, intense sensory input. Pudding is not the problem; inactivity is. Today, she hasn’t played outdoors enough, and her body yearns for sensory-motor activity. She may feel as though she cannot sit still a minute longer.

What helps? If, through your sensory spectacles, you see that Mary Jane is overwhelmed, then lower the sensory load. Replace the offending food with one she likes so she will stay peacefully at the table. Or, if you see that she is fidgety and craves movement, then raise the sensory load. Let her go jump rope, stretch an exercise band, dance to music, or hang from a chin-up bar.

If Mary Jane’s behavior is frequently out-of-sync at school, at home, and out and about, it may be necessary to have an occupational therapist who uses a sensory integration approach evaluate the child. Insisting that she eat rice pudding will never work; addressing her sensory processing challenges with understanding and appropriate treatment will.

*Original article featured on Psychology Today

Carol Stock Kranowitz is an internationally-recognized expert on sensory processing disorder (SPD). She is the author of the “Sync” series, which began with the acclaimed The Out-of-Sync-Child.

As a music, movement, and drama teacher for 25 years, Carol observed many out-of-sync preschoolers. To help them become more competent in their work and play, she began to study sensory processing and sensory integration (“SI”) theory. She learned to help identify her young students’ needs and to steer them into early intervention. In her writings and workshops, she explains to parents, educators, and other early childhood professionals how sensory issues play out—and provides enjoyable sensory-motor techniques for addressing them at home and school.

by Carol Stock Kranowitz, M.A.

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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Help us make information about sensory processing challenges

available in 6 additional languages and accessible to 2.4 billion people.

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

Shopping for Socks With Sensory Processing Disorder

STAR Admin — Thu, 11 Oct 2018 17:38:35 +0000

Shopping for Socks With Sensory Processing Disorder STAR Admin Thu, 10/11/2018 - 17:38

I have to tell you about my shopping trip but first I'll need to explain a few things. My 13-year-old son, Jackson, has Sensory Processing Disorder. His tactile sense tends to work against him more than in his favor most days especially when it relates to clothing. One of the hardest things to find for him is socks. Socks with pesky seams, elastic at the top, too high, too short, too rough, you name it. They just stink before they ever get on his feet. Those of you with tactile sensitive kids will understand my outburst of joy at Target regarding socks.

Several months ago while going over my packing list for our trip to Colorado, Jackson mentioned that he needed more socks. No worries. We had been buying the "perfect" socks at another store for the past several years. They always had them. Those socks were a staple item there. We hopped in the car and went to grab some and that's when the panic did set in. They were gone without a trace. No empty peg, no shelf tag with an empty space above it. They had vanished from the face of the earth. I quickly pulled up the company website and found they had been discontinued. I wasn't sure if I was about to break into an ugly cry or a fit of hideous laughter as once again the real world played a sensory joke on me the day before we left on vacation.

I assured him that we would find something else and we dashed off to Target. He checked out every pair of socks in the store and found some that were a similar style and even came in colors that he liked! Score! We grabbed a few pairs of the socks, went through the check out and the next day headed out for Denver and our mountains with happy feet.

Fast forward a month. Jackson had decided to go back to Target with me to grab a few things, again a rare occurrence since he's not fond of shopping. We passed by the men's department on the way to another part of the store and I mentioned that we should stop and get him a few more pairs of socks. I went straight to where they'd been on the end cap of the display. No socks. I ran around the side of the rack. No socks. No socks at the end of the isle either or on the other side. Panic started to creep back in. They can't do this to me (I mean him)! I happened to look on the back wall that said "Clearance". There were two pegs with about 8 pairs of his socks on each peg. One peg held crew socks for winter and the other had shorter ones for summer. He was just as excited as I was and reached up and removed a package of each. This is when I think he thought I'd lost it. I removed one entire peg from the wall and dumped it into our cart. Then I did it again with the entire peg of crew socks. His eyes got wide and he said, "What are you doing?" With a maniacal laugh I said that we were NOT going to have to worry about sock hunting anytime soon. This mom has been around the SPD tree too often. I know how to play this game!

As we finished our shopping I was on cloud nine to think that we'd found socks in what appeared to be the nick of time. At the register we piled the conveyor belt with socks. The cashier gave us an odd look and said, "These must be really good socks!" I just smiled and told her that she had no idea just how good they were. I'm certain she had never had a customer be so excited about socks before and might never see it again. All I know is my Jackson walks with happy feet because his socks feel so good. That's all that matters.

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.

Please Support

Project 2.4 Billion

Help us make information about sensory processing challenges

available in 6 additional languages and accessible to 2.4 billion people.

Meggin has recently achieved a long term goal of founding a non-profit organization, Sensational Hope (www.sensationalhope.org), which provides community awareness about SPD in the Kansas City Metro Area. It connects families as well as assists children with SPD in the purchase of needed therapy equipment. Meggin resides in the Kansas City area with her husband of 15 years, Erich, her two sons, Bryce and Jackson, her two furry children (dogs) Chance and Sadie, two Rabbits (Max and Bailey), and last but not least, 10 fish. Meggin is honored to blog for the STAR Institute and is looking forward to connecting with other SPD families.

by Meggin

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.

Instructions Unclear, Please Try Again

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.

Please Support

Project 2.4 Billion

Help us make information about sensory processing

challenges available in 6 additional languages.

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

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 Norris, MS, OTR/L

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

Occupational Therapy

Assessment, SPD

The Two Days That Renewed Me as an SPD Parent

STAR Admin — Fri, 18 May 2018 18:50:32 +0000

The Two Days That Renewed Me as an SPD Parent STAR Admin Fri, 05/18/2018 - 18:50

Last year I attended a two-day event that renewed my fighting spirit like no other. I felt as if I'd been bathed in waters that brought my spirit to life again. There are days in our individual communities when we have to fight such an uphill battle that we forget about our villages. I spent two days surrounded by "my village". Everyone there spoke my language, cried my same tears and celebrated my same victories. We were all fighting the same fight for Sensory Processing Disorder (SPD).

What was the event that inspired and renewed me?

It was STAR Institute’s International 3S Symposium that I attended last October on behalf of my non-profit, Sensational Hope.

My organization networks and helps families in the Kansas City area with Sensory Processing Disorder. I decided to attend STAR Institute’s symposium because I knew I would have the opportunity to network with other like-minded individuals. On top of that, let's just get real, who could pass up the opportunity to be in the company of Dr. Lucy Miller?

The symposium in Denver offered two tracks. One was more strategy focused for both parents and therapists and the other one was a research track. I opted to take the strategies track first hoping I could snag the research articles at a later time which I was able to do.

I hit the road early on Friday morning towards the conference venue, and I was giddy with excitement. I knew that I was about to see familiar faces and, most of all, I was going to be back in a room of hundreds where everyone was SPD-friendly. They get it!

Upon arriving, I checked out the exhibitors and found a ton of things that I "needed". There were so many companies there that support SPD and make life a little easier for our kids.

At the opening session my hero walked on stage, Dr. Lucy Miller. Her passion for SPD is endless, and she fights for individuals with SPD like nobody else. Yes, I cried when I saw her. She'll never know the number of lives she has touched and changed. But wait! Who's this new Virginia Spielmann? Jury's out I thought. She's not Dr. Miller (keep reading please because you'll find out that she actually is).

I attended multiple sessions over the next two days. Diana Henry always amazes me. Her depth of wisdom and years of experience in this field are priceless. A panel of STAR Institute Occupational Therapists led a discussion that was so beneficial to everyone. One OT shared her own personal journey that was incredibly touching. It was the first time she had shared it in public and it was moving to all of us there. The list goes on and on regarding the amount of information that was shared. The speakers were spot on.

One of my personal highlights occurred while waiting for a session to start. I was digging for a peppermint in the candy dish on the table when a woman sat down next to me. I looked up to say hello and holy cow, it was Carol Kranowitz! Good thing that mint wasn't in my mouth already because I would have inhaled it straight down my windpipe! It just got better when she remembered who I was, and we had some amazing conversations over the next few days. Those of you that have read The Out of Sync Child along with the rest of her library know what an amazing woman she is. Carol is another that has fought for individuals with SPD for years and never gives up on the battle. She's another hero of mine and one who will never know the impact she has had on the SPD world, our families and kids.

At the networking luncheons we had various conversations about adolescents and teens with SPD, service animals and SPD and a slew of other topics we could check out from table to table. It was so wonderful to chat with therapists of all types, fellow parents and others that were just there to learn more. I kept thinking that I wish every disorder that exists had the opportunity for this many brains and champions to sit down together and figure out how to make the world a better place for those affected by their disorders and diseases. The ideas that came out of those table discussions were invaluable.

I was truly honored when I got invited to attend the Speaker's Dinner on Friday night. I could barely eat as I sat in the company of people I'd only read about in books. My most embarrassing moment was speaking with a lovely lady for quite some time while we ate. I then apologized that I hadn't introduced myself and asked her name. She said it was Dr. Margaret Bauman. Again, thankfully I didn't have food in my mouth so I didn't choke. I was sitting next to the woman who established the Autism Research Foundation! This folks, was my equivalent of attending the Academy Awards. These are my stars and that was my Hollywood.

So, back to this Virginia Spielmann. Who was she?

She seemed nice with a really cool British accent, a great sense of humor, and it was obvious that she was an SPD genius. By the end of the conference I had been able to catch her here and there as she sprinted around overseeing this amazing conference. Virginia, my friends, is another Dr. Miller. She is here and she is fighting for us. She moved from Hong Kong to take the job at STAR Institute. She was handpicked by Dr. Lucy Jane Miller and we couldn't be in better hands. This had been a real fear of mine because I knew that Lucy would eventually want to retire. Who could possibly step in to replace her? Well, we’ve found her. Virginia and Dr. Miller together are a force to be reckoned with and we are very blessed.

To see the passion of the STAR Institute therapists and staff, OTs from around the globe, fellow parents, leading researchers and countless other individuals was awe inspiring to say the least.

Tears flowed as I pulled out of the parking garage that day. The same tears that I had cried as we left the intensive treatment program with my son at STAR Institute almost six years ago. Tears filled with thankfulness, joy and a little sadness to know I was going back home to continue the battle somewhat alone. Most of all though, my tears were filled with hope. Hope and reassurance that we are making progress with SPD. More and more people are hearing us and seeing our kids. So keep up the fight; help spread the awareness. Most of all know that you do have a really, really awesome village.

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.

Registration for STAR Institute's 21st International 3S Symposium and Pre-Symposium Parent Workshop in Atlanta is NOW OPEN! Find out more information about these events and register here.

Can't attend in person? Register for the livestream of the Parent Workshop here!

Meggin has recently achieved a long term goal of founding a non-profit organization, Sensational Hope (www.sensationalhope.org), which provides community awareness about SPD in the Kansas City Metro Area. It connects families as well as assists children with SPD in the purchase of needed therapy equipment. Meggin resides in the Kansas City area with her husband of 15 years, Erich, her two sons, Bryce and Jackson, her two furry children (dogs) Chance and Sadie, two Rabbits (Max and Bailey), and last but not least, 10 fish. Meggin is honored to blog for the STAR Institute and is looking forward to connecting with other SPD families.

By Meggin