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Monday, December 28, 2015

My Neurotypicals' Guide to SPD Picked as a Top 10 Post of the Year!

Friends! I'm so excited to share that my Neurotypicals' Guide to Adults with Sensory Processing Disorder was the SIXTH most popular post on The Body is Not An Apology in 2015! To honor this, they've re-featured the piece on their website:








As many of you know, this is the article that inspired my upcoming guidebook, Making Sense: A Guide to Sensory Issues, which will be released on February 1, 2016 and is still available for pre-order on Amazon and Barnes & Noble.




It's been an awesome year of advocacy, and I can't wait to see what 2016 brings. Thanks to all of you for the endless love and support!

My Latest Article for The Body Is Not An Apology - Surviving the Holidays with SPD

This one should look familiar to most of you loyal readers :) It's a blog post of mine from last winter about surviving the holidays with SPD Always a treat to have a post featured on The Body Is Not An Apology!

You can find the article here.














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Shameless Self Promotion: Want to learn about SPD from a delayed-diagnosis sensory adult's perspective and hear more from yours truly? Pre-order Making Sense: A Guide to Sensory Issues today!

Wednesday, December 16, 2015

Jack of All Excuses, Master of None

In what feels like another lifetime, and many years ago, I sat in my (now) ex-fiance's tiny studio apartment one evening and stared at his faux brick fireplace. Actually, "stared" is wrong, I attempted to bore flaming, angry holes into the wall with my eyes. It was late by my standards, way too late for any last minute surprises, and yet here we were, he and I, debating the merits of meeting up with two of his old college friends who "just happened to be in town for the night" and wanted to grab a quick drink and catch up. I was already in my comfiest of around-the-house clothes, having peeled off my work-casual attire hours before. I was unfamiliar with his neighborhood, as he'd just moved into the tiny postage stamp of an apartment to share a city with me. And did I mention that it was late and a surprise? It was late. And. A. Surprise.

Me, near tears: "There's no way that I'm going out now. I can't handle it."

Him, frustrated: "Well, what do you want me to tell them? They're going to ask why you didn't come! They're going to think that you don't like them."

Me: "Tell them I'm sick. Tell them I'm on a work deadline. Tell them I'm busy. Tell them anything you want."

This was about half a decade before I even knew that my rigidity and sensitivities had a name and a neurological origin, five years before I'd meet the man I was supposed to marry - the one who knew how to accompany me on my complex journey, and one year before I'd wriggle away from the well-meaning but undesirable clutches of the man who made my excuses that evening to some nameless college friends, a lifetime ago.

I can't remember if I sat alone and cried, terribly ashamed for my perceived shortcomings (most likely what happened), or if he popped down to meet his friends for just a few minutes while I calmly watched TV (highly unlikely), or what happened next, really. Time is kind and polishes even life's roughest edges down to a shine.

But the point is that for the first 27 years of my life, I was the Queen of Excuses.

HRH, Queen Rachel of Excusington
*waves*

Holiday party? Doctor's appointment, sorry. Birthday dinner? Cousins are in town! Dance troupe performing in an abandoned warehouse downtown? Can't get over this damn flu. I kept a running list in my head of all of the reasons - sensical and nonsensical - that a typical human wouldn't be able to go places, and I accessed them like a pocket-full of candy: grandma died, cat is sick, menstrual cramps, slipped and fell, rescuing lost puppy, joined a cult, forced religious fast day, mild hypothermia from a brisk run in the park. 

The truth was I didn't know why it was so hard for me to not only get around, but be around. I knew that there were many things that I didn't feel comfortable doing, and I didn't have the words to express why. I also knew that, "sometimes having fun in new and busy places is actually scary for me because it feels weird in my body and I want to hide and I can't see things and sound gets weird and I feel embarrassed and get anxious and want to negate myself" just wasn't going to cut it. 

And so, from the outside and for most of my 20s, I was the busiest and most unlucky girl alive - always filled with plausible excuses for how I was spending my free time. I didn't make it to group gatherings, especially late at night, especially in unfamiliar and busy places. Instead, feeling guilty for lying and ashamed of being different without knowing what or why, I sat at my laptop in my comfiest around-the-house clothes and cried as I flipped through photos of my friends, my family, and my coworkers having fun. It was in these moments that my inner voice turned punitive. "What is wrong with you?" I said to myself, sharp and unforgiving. "Why can't you have fun for a change? Why aren't you normal?" Jealousy and self-hatred ran through my veins. 

You'll be glad to hear that I'm no longer the jack of all excuses. These days, I know much more about who I am and how I'm wired. I advocate for people like me. Hell, I even wrote a book on the topic. When someone invites me to something I can't handle due to my SPD, I tell them so. If they've never heard of Sensory Processing Disorder, or sensory issues in general, I use it as an opportunity to teach them about my challenges. I even begin the conversation sooner, when I meet someone and we get to know each other for the first time, so that when they invite me to that midnight rave/flashing-light-parade/impromptu ironic sockhop, they're not surprised to hear that I'm not coming. With the truth, I've also freed myself from the pit of shame. I no longer have to make excuses for being different, for being me. 

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Shameless Self Promotion: Want to learn about SPD from a delayed-diagnosis sensory adult's perspective and hear more from yours truly? Pre-order Making Sense: A Guide to Sensory Issues today!


Wednesday, December 2, 2015

The One Thing You Should Never Say to Someone With Sensory Issues - My Latest Article for The Mighty

Friends, I'm proud to share my latest article for The Mightya news-media website dedicated to sharing stories about disabilities, disorders, mental health issues, and the human spirit. I chose to write about an experience that many of us in the greater sensory community deal with on a regular basis, and the ways in which we can all work together to change this experience. 

For more, click here



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Shameless Self Promotion: Want to learn about SPD from a delayed-diagnosis sensory adult's perspective and hear more from yours truly? Pre-order Making Sense: A Guide to Sensory Issues today!

Wednesday, November 25, 2015

I'm Thankful for YOU

On my blog's Facebook page this morning, and in honor of Thanksgiving, I shared a note of thanks with many of you. Here it is again, just in case you missed it. And I mean every single word.

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Dear Sensory‬ Friends,

I am incredibly thankful‬ this year. When my Neurotypicals' Guide came out on The Body Is Not an Apology in late December 2014, I had no idea what it would mean for me in 2015. And then in March, Sensory World asked me to write a guidebook modeled after the article, explaining sensory issues. I'd dreamed of writing a book ever since I was tiny, and in a single moment, one of my oldest, most deeply-held dreams came true (and it's due out this coming spring! WOO!) After that, this year of ‪#SPD‬ advocacy and education caught on fire. I have absolutely loved working with the Sensory Processing Disorder FoundationSPD Parent Zone Organization, and The Sensory Spectrum on all sorts of conferences, articles, videos, and projects, and it's been an honor advocating alongside some of my favorite members of the greater sensory community, namely Eating Off PlasticAnnetta Nesler - SongstressSPDlife.orgspdlife.org, and Chloe Rothschild.

What am I most thankful for, though? YOU. Every single one of you. I continuously can't believe that you not only let me tell my story, you applaud it. You even seek it out. You leave me notes here and on my blog. You email me and message me. You open up to me and share your innermost secrets and fears about your sensory self and your sensory children. You let me laugh with you and cry with you. You let me cheer on your triumphs and sit with you during your challenges.


I used to wonder why I was so different and why I felt in constant retreat from the world around me. I was quietly angry and disappointed with myself for what I perceived to be my shortcomings, and at times, I even hated who I was and mourned who I could never be. I now know that I was just in training for the future, for a time when I'd need to step up to the plate and speak my mind about the very thing that made me who I am. I was learning how to be proud of my differences in ‪#‎neurology‬ and to demand the respect that I deserved as a human being, regardless of the very same differences. I was preparing for this - the book, the blog, the articles, the conversations - all of it.

I was getting ready for you.

Thank you for being the most important part of ‪#MySensoryLife‬. An advocate is only as good as their community, and I am honored to be a part of the very best one.

Big things are coming in 2016, so stay tuned!

I love you all,

Rachel
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Shameless Self Promotion: Want to learn about SPD from a delayed-diagnosis sensory adult's perspective and hear more from yours truly? Pre-order Making Sense: A Guide to Sensory Issues today!

Thursday, November 19, 2015

My Presentation for SPD Parent Zone's Online Sensory Conference

This past weekend, I had the great honor of speaking about #MySensoryLife at SPD Parent Zone's Online Sensory Conference with some other amazing leaders of the Sensory Community


I was the first presentation of the day and I had (have) a raging, nasty cold-bug-thing (akin only to the Plague, btw), but I managed to ply my system with decongestants and still sound relatively coherent during my 45-minute slot. I spoke about my life with SPD, from my undiagnosed childhood to my first major shutdown at age 14 to misdiagnosis and therapy and SPD diagnosis and beyond. It was an incredible experience to share the things I've learned - both about myself as a sensory being and about life and attitude towards sensory challenges - with the 500+ people who signed up for the conference. And now, I'm really excited to share all of this with you! 

The entire full conference, every speaker's slides and presentations and all, is available here for a $5 donation to support Chicago's First Sensory-Friendly Cultural Programming Summit in April 2016, at which I'm also speaking (click the Buy Now button towards the middle left of the page).

For those of you who just want to check out my slides presented without spoken text (which you'll probably need to understand what's going on in the slides, sorry!), they're below.

A truly wonderful experience! Thanks again to those of you who came to listen, and especially to my dear friend Kelly Jurecko of SPD Parent Zone, who continues to make all of my dreams and craziest schemes come true.















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Shameless Self Promotion: Want to learn about SPD from a delayed-diagnosis sensory adult's perspective and hear more from yours truly? Pre-order Making Sense: A Guide to Sensory Issues today!

Monday, November 16, 2015

My Latest Article for Sensory Focus Magazine - Body Lost in Space

I'm always proud to add my voice to the latest Sensory Focus Magazine, and this season's article is no exception. It's about my struggles with one of the lesser-known senses, proprioception, or where your body ends and the world begins. Where we physically exist in space is a concept that most people don't ever consider, but for some of us with SPD, it's a daily struggle to connect our body to the spatial world. We're always covered in cuts and gashes, and we wear bruises like badges of honor.

Sound familiar? Read on.

~Rachel







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Shameless Self Promotion: Want to learn about SPD from a delayed-diagnosis sensory adult's perspective and hear more from yours truly? Pre-order Making Sense: A Guide to Sensory Issues today!

Tuesday, November 3, 2015

The Sensory Implications of Daylight Saving Time

Monday morning, as I stirred from the haze of sleep, I caught a sliver of light peeping in through the slats of our bedroom blinds. Light hasn't poured into our bedroom that early since the summer, and so for a quick second, I couldn't place the season or make sense of the time. It's chilly but it's bright but it's early. I normally don't "compute" so well first thing in the morning, especially when it comes to making sense of the sensory world around me, and I felt a gentle cascade of anxiety swell and dissipate. It felt much later than the alarm clock suggested. Much cooler out than the light implied. Where was I? What was going on? Why did life feel so wonky even before I'd even stepped out of bed?

And then I remembered. Daylight Saving Time ended on Sunday. 

This clock is happy because he's clearly insane

I made my morning smoothie, laced up my sneakers, threw on a coat, and moved out the door for my brisk morning walk around the neighborhood. It's a brief foray into the sensory world, a mini-exposure-therapy, if you will, for a woman who works blissfully remotely, and so doesn't always have an excuse to step outside and face the intensity of the world she can't always process properly. These days, this walk is typically relatively pleasant. I watch the faces of school children, cheeks rosy from the early November wind, as they trot alongside their parents clutching backpacks. I coo at babies and smile at dogs and their owners. I don't think too much about sensory input, aside from the joys of spotting the daytime moon on a clear, blue morning.

On Monday, completely discombobulated, steps out of our apartment I smelled something old and fishy. A truck chugged by and I clamped my hands over my ears. The giggles of children whirring by on Razor scooters made me leap closer to the sides of the buildings. I fought the urge to run my fingers along the concrete and glass as I strode ever further down the street. Under my breath, I quietly cursed Presidents Wilson and Roosevelt for instituting Daylight Saving Time in the first place.

 
Why, Gentlemen. Why?

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The rule of thumb in the sensory community is this: if a neurotypical is struggling with something, especially with some sort of change or sensory challenge, there's a good chance a sensory person is struggling tenfold. Is the hum emanating from the airplane engine bothering you as you soar above the clouds? The person with the Sensory Modulation Disorder subtype of SPD, especially one who avoids sensory input, is probably already scaling the plastic walls and digging in their carry-on bags in search of ear protection. Do you wince as the swirl of police lights sporadically light up the night as you drive past a squad car on the highway? This same person with SPD, again an avoider, is momentarily blinded and disoriented and probably struggling to keep their car on the road to begin with. Can't quite get the hang of a dance routine or tennis with the in-laws or playing darts with the after-hours coworker crew without maiming a colleague? The person with the Sensory Based Motor Disorder subtype of SPD is probably frustrated and embarrassed, feeling clumsy and uncoordinated, making you look like Venus Williams. They may have already even given up, even as you try your damnedest to kick-ball-change.

Daylight Saving Time is miserable for neurotypicals and sensory people alike. No one likes to suddenly lose an extra hour in their day, and for those who claim that ending Daylight Saving Time means that they get to sleep even later, talk to me when your body clock has you up at an ungodly hour anyhow. Everyone - from parents to pup-owners - fight the haze and disorientation of Daylight Savings.

Now envision that you have neurological differences that make you incredibly sensitive. Imagine that you rely on certain basic, rigid patterns and routines to keep you feeling safe in a body and brain that are perpetually telling you that you're in danger. Think of the importance of sleep in this routine, of the loss of sleep leading to intense neurological episodes of tears, detachment, and anxiety where your eyes can't make sense of sight and your ears can't make sense of sound and you lose your footing in an already precarious world. Visualize your reliance on certain principles of time and space, of light and dark, of stop and go because they're not always felt internally. Picture dreading change because predictability is the only real guide you have in a world you often can't understand.

And now set the clocks back one hour and watch chaos ensue.

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I'm not even sure if this post is coherent. I left my authoritative, cogent writing voice back in October, along with a sensical circadian rhythm and a watch setting that displayed the time one hour later.

Tonight, as it gets incredibly dark supremely early, I won't mind Daylight Saving for a chance few minutes. Most people in both the neurotypical and sensory communities hate when it gets dark so quickly, but I love the logical, fixed division of evening = darkness and daytime = light like the predictable, reassuring ebb and flow of the tide. I'll feel settled then for a few moments, sleepy but grounded in the cool comings-on of the evening, thick with autumn.

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Shameless Self Promotion: Want to learn about SPD from a delayed-diagnosis sensory adult's perspective and hear more from yours truly? Pre-order Making Sense: A Guide to Sensory Issues today!

Wednesday, October 28, 2015

Between the Lines

Hours before the dawn ever considered breaking, my Handler and I arrived at the airport on what was barely a Saturday, our carry-on baggage in tow. I hadn't flown in a few years - hadn't moved through the cavernous, blinding terminal or walked the long, unstable plank to the plane's tiny hatch door - and so, as you might expect, I was particularly anxious. Because it was so early (or perhaps "because it was so late" depending on your Friday night going out tolerance), my senses were already particularly challenged. Half asleep and unsteady, I played Follow the Leader with my husband as he moved through the rotating airport doors. He moved his left foot, now you move your left foot. He walked to the right, now you walk to the right. Good girl. I dragged his small suitcase behind me like a toddler blanket.

And then I looked up. In front of me, more than eighty people long, was one of those long, snaking lines people sometimes call a "queue" leading up to the security checkpoint; a maze writhing with yawning children, chatting friends, and unkindly officers ushering passengers through shifting elastic barricades.

Truth: Sensory people don't like lines.

Oh, hello nightmare situation

And I hear what you're saying, dear reader, Oh, but Rachel, no one likes a line. And yes, barring some eccentric Linear Awaiting Expert, whose sole mission in life is to strategically assess the motion and positioning of lines by standing on as many of them as possible, most people don't like lines most of the time. I'll give that one to you. But if neurotypicals don't like lines; especially snake-y, queue-y ones; people with sensory issues can't stand them.

Imagine, if you will, that you are being punched in the face over and over and over by some random invisible assailant. You spend most days in this state, somewhat uncomfortable and somewhat irritated, and so you're logically used to the abuse of your unique neurology. But today, it's especially early. The lights are blindingly bright. The hallways echo. Shoes squeak menacingly against the slippery floors. You are not only uncomfortable, you hurt as each knuckle crashes into your poor assemblage of a nose and tender eyes. Now picture you're being punched as you're waiting in line. You're roped into a loopy, pre-set path, and society requires you to continue forward in order to get where you're going. The assault to your being will only lessen at the end of the line. You need to keep an eye on your luggage as you try to protect your aching ears. You need to escort your body forward even as your skin is bruising and your bones begin to ache. You need to discern the distance from yourself to your assailant, from your assailant to the next person in line so that you're not given sideways looks by strangers as you plow directly into them. You hear snippets of their conversation, even as you are clocked in the chin, and with each twist of the line, new snippets and new strangers are sent to march beside you, blocked only by a thin rope. The visual array of people in controlled-motion, moving in the pre-set space allotted, is overwhelming.

If you feel like getting out of the line, you can. This is America after all, and you're not legally required to be on this line or any line. You can step out of line and take a sensory break. You can hail a cab and go the hell home. You can run up and down the entire length of the airport vestibule clutching pinwheels and whistling dixie. But if you want to get to Point B, to the place you need to go, through the metal detector to your terminal to the plane with the seats that you booked to your destination, you must stand in this line. You must move through it, even as you plead with your sensory assailant and pray that no one notices the extent of your seemingly inexplicable discomfort, because there's nothing worse in a moment like this than starting the diatribe that begins, "My name is Rachel and I have a neurological condition called Sensory Processing Disorder." Like so many things in life, the only way out is through.

You know I made it through because you know we always make it through. My reward for surviving the queue was getting to be here for a few days:

Be still my heart

That's the thing about life with SPD. Short of having a shutdown on live train tracks or a meltdown midway through a skydive, you always come out alive. But the unseen battle deserves to be highlighted too. We owe it to ourselves to explain our struggles (and successes) with the seemingly inane so that we can better understand why we behave the way that we do, and people without SPD will only understand our inner-workings and our hidden challenges when we cast them into the spotlight.

Let's celebrate even the smallest things. This week, I survived the thrash and flail of two long, snaking lines. That surely deserves a gold star.

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Shameless Self Promotion: Want to learn about SPD from a delayed-diagnosis sensory adult's perspective and hear more from yours truly? Pre-order Making Sense: A Guide to Sensory Issues today!

Monday, October 19, 2015

The Most Important Thing to Know About SPD (IMHO)

Sensory Awareness Month is still in full swing, and as you may remember, I'm sharing one fact about SPD every single day in October from my book, Making Sense: A Guide to Sensory Issues, which is available for preorder now (woo-oooo!)

One of the most important facts is the one I shared yesterday on my Coming to My Senses Facebook page, and something that I explain in further detail in my book. IMHO, it's perhaps the most important thing to know about SPD, because it speaks to the underpinnings of the disorder. What causes SPD? Why do people have sensory issues?

As part of the SPD Foundation's Scientific Working Group, a team of amazing researchers have found that in brains with SPD, the tracts of white matter, or the bits that connect the other areas of the brain, are actually less well-connected than in people without SPD. It makes sensory processing not only more difficult, but sometimes impossible.

You can read more about this groundbreaking study here and follow me on Facebook for other important things to know about SPD.


Wednesday, October 7, 2015

10 Sensory Quirks Only Someone With SPD Will Understand

Woo, my latest joint-project for Sensory Awareness Month is LIVE!

A team effort with my favorite sensory illustrator, Kelly of Eating Off Plastic. I am clearly biased, but I just love everything the two of us create together.


Thanks to the awesome Jennifer of The Sensory Spectrum and The Jenny Evolution for hostin' our postin'!

You can find 10 Sensory Quirks Only Someone With SPD Will Understand on Jennifer's page HERE.

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Shameless Self Promotion: Want to learn about SPD from a delayed-diagnosis sensory adult's perspective and hear more from yours truly? Want to see more hilarious illustrations by Kelly Dillon of Eating Off Plastic? Pre-order Making Sense: A Guide to Sensory Issues today!

Saturday, October 3, 2015

Pride (In the Name of SPD)

Controversial Statement Warning:

I am proud to be an adult with Sensory Processing Disorder.

I Made Dr. Zoidberg Sad. Sorry Buddy.

This pride seems totally counterintuitive to the limited form of life I lead. It seems silly in the face of the therapies I've undertaken and the money I've spent to feel only sort-of-well. It appears to be misplaced pride when I'm in the thick of yet another sensory shutdown or another meltdown and the world around me is waiting for me to just get my sh*t together already.

How can I be proud of the very thing that so frequently holds me back? How can I be proud of the attributes that keep me feeling just shy of "normal" and at arm's length from the fully-engaged life enjoyed by so many others?

How can I be proud of my neurological differences when they impact every corner of my life?

My reasoning is simple:

I have SPD. I was diagnosed long after I developed anxiety issues. I spent years feeling hypersensitive and embarrassed by the very things I couldn't control and didn't understand. I interact with the world differently because of the way I'm wired. I cry more easily. I don't know how to relax. I am sometimes especially challenging and inflexible and emotional.

And yet, this is who I am. I am also supremely loyal and intuitive. I can tell you how you're feeling long before you've even opened your mouth to speak. I feel your pain and your triumphs so intensely, that I am the one you call when you are at your lowest point in life and your highest. I sit with you in the trenches of your misery and dance with you on the shores of your joy. My value in life stems directly from shepherding you through these times both unscathed and with some humility. I feel music somewhere deep within my bones. Every stride I take through this world is laced with poetry.

Even with these incredible traits, I still spent years sitting with the shame of some unknown attribute that made me feel lesser-than. I can't handle things, I'd say, burrowing even further under the covers. I was ashamed of who I was for the first three decades of my life. I spent most of this time having no clue that who I was was something to be celebrated.

I can't change the fact that I have SPD. I have always been and will always be wired differently than most. Feeling ashamed of this won't change who I am or how I live my life. For me, the opposite of shame is pride. Life's too short to be ashamed, especially for the things we cannot change, and so when we choose pride instead of shame, we take back control. The very second I decided to be proud of myself - of all of me, and not just the good bits - the entire universe opened up to greet me. I began my advocacy work in earnest. Hundreds of people flocked to read my thoughts about all of this stuff. Next spring, someone is publishing my book.

This is my life. I am not an acrobat with Cirque du Soleil. I am not a cowgirl. I don't have Lupus. This is my path, much as it is many of yours. You have a choice to make in your sensory life. You can choose shame and spend your time feeling defeated by the very thing that makes you you. I won't stop you. When you've made the decision to live within your perceived flaws, no one, not even this passionate advocate, can stop you. Your glass will always be half empty. But there's another choice you can make. Choose pride. Choose to celebrate your quirks and sit patiently with your own challenges, much as you'd sit beside a friend. Choose to highlight every tiny step forward, for these steps take immense bravery and drive and patience, and find kindness for every tiny step backward. You won't always be proud, not every single second. You are, after all, only human. But pride isn't a moment-to-moment thing. It is a thread that is woven through your sense-of-self and a filter by which you choose to view your world and your experiences . . . and although your world is complex, and it takes so much work to do what takes others mere seconds, you deserve to feel good too.

I am no longer ashamed to be who I am. Life is short, and I don't deserve to live in shame for how I was created. Guess what? Neither do you.


Happy Sensory Awareness Month. Keep being proud.

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Shameless Self Promotion: Want to learn about SPD from a delayed-diagnosis sensory adult's perspective and hear more from yours truly? Pre-order Making Sense: A Guide to Sensory Issues today!

Thursday, October 1, 2015

Happy Sensory Awareness Month!

It's October once again, and the entire SPD community is celebrating sensory awareness! As part of these efforts, I'm posting a fact about SPD on my blog Facebook page every single day of the month. Each fact is taken from my upcoming guide book, Making Sense: A Guide to Sensory Issues (now available for pre-order on Amazon and Barnes & Noble). I won't post all of the facts here - not enough hours in the day for that much blogging, sadly - but I will try to share at least one a week through the month. To see the whole set of 31 facts, visit my blog fan page on Facebook (and like the page, of course!)

I've also worked with my favorite sensory sidekick and guidebook illustrator, Kelly Dillon of Eating Off Plastic, on a fun awareness project that will be featured by our friends over at The Sensory Spectrum/The Jenny Evolution sometime during the month. As soon as it's shared by them, I'll be sure to post it up here for all of you.

Here's to even more awareness,

Rachel





Monday, September 28, 2015

Upcoming Sensory Speaking Engagements

I'm so excited to announce that I've been asked to speak at two upcoming sensory-related speaking engagements!


1. SPD Parent Zone's Online Sensory Conference
November 15, 2015
9-2pm CST
Online
For tickets, click here or here

Get Excited!

Join fellow sensory parents, adults, teens, and friends online and watch from the comfort of your own home as top experts in the field talk about Sensory Processing Disorder. 

Proceeds go towards the Sensory-Friendly Summit in Chicago in April 2016 to educate local art institutions, theaters, and businesses about the importance of sensory-friendly art and culture initiatives. 


2. Sensory-Friendly Summit - Chicago, Illinois
April 2016
For Chicago Arts and Cultural Institutions
By Invite Only

I'll be one of four speakers discussing SPD and the importance of accessibility in the arts for people with sensory issues. Growing up as an undiagnosed sensory kid living in New York City who loved (and struggled with) the theater, this is an issue that is especially near and dear to my heart.

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Shameless Self Promotion: Want to learn about SPD from a delayed-diagnosis sensory adult's perspective and hear more from yours truly? Pre-order Making Sense: A Guide to Sensory Issues today!

Sunday, September 13, 2015

What Sensory Parents Can Learn From SPD Adults

Sensory parents, we need to have a chat.

Recently, I saw a string of comments in response to a fellow SPD adult's post about her personal acceptance with her sensory struggles. It went something like this:

Parent 1: I disagree with what this gal says.

Parent 2: Me too. My child will be way better prepared than this chica has been for her sensory life, so she'll be able to cope better. Let's disregard this post.

Parent 1: Hear, hear.

The post itself was lovely, welcoming, and engaging. The blogger said nothing untrue about her own experience with SPD, because as you will agree, all experiences are valid in this life. She also happened to say things that are spot-on, not only for the delayed-diagnosis sensory adults of this community (like yours truly), but for both teens and children diagnosed nice and early. What she wrote is what I've heard from pretty much everyone across all areas of this community as a leader of the adult faction. In short: this post was conceptually close to flawless.

And yet, here were these two parents doing . . . what, exactly? Pushing back? Mama birding? Proving something to themselves? Proving something about their children? Fighting their own insecurities about their differently wired children?

Listen. We're all in the same boat here. The vessel is the S.S. SPD:

Ahoy-hoy

Some of us are passengers on this ship and some of us are oarsmen. The thing is, although our experiences vary, we can learn so much from one another if we just stop and listen, without judgment. This is especially true with sensory parents and delayed-diagnosis sensory adults. There's something special in our connection if you know where to look.

So what can you learn from us?

We can give your child a voice. 

We were once voiceless sensory children. In childhood, it's not only hard to understand what's commonly experienced by others and what's unique to your makeup, it's hard to find the right words to explain, in depth, what it feels like to live in a complex sensory world. Especially one that parents and teachers may not have experienced themselves and may not accept as being real.

Do you know those Before and After pictures that they show when they advertise weight loss supplements? Like this fella?

hubba hubba

Well, I like to think of delayed-diagnosis sensory adults as the eternal Before. (Not in a morbid or powerless way, mind you, I feel quite positive and strong most of the time.) I agree that so much can change for people like me with the right types of therapies and tools in place. But in reality, we never will rewire in quite the same way as those diagnosed earlier than us. We have had too many life experiences. We've developed too many patterns. We've found a creative way to cope with our challenges. (We are the Kings and Queens of Coping, by the way, and not unable to cope as those comments wrongly implied.) Because we've been voiceless sensory children and we're the eternal Befores, we are - in many ways - going through exactly what your child is going through now. Some of us are new to OT. We have meltdowns and shutdowns. We are doing our damnedest to establish our sensory sea legs. The difference is we're older, we're more experienced, and we can better express what it's like to live in a sensory body.

We can unlock the secrets of living with SPD for you. We can demystify your child's experience of the world. Neat, huh.

Sometimes I jokingly tell parents that I'm the worst-case scenario for their children. I'm an example of someone who didn't receive the treatment and accommodations I needed because no one knew SPD existed, even though I was raised by the most incredible, loving family. And what happened to me in my life? I graduated from college and graduate school with great grades. I got married. I developed hobbies and passions. I work hard to fight for others like me. I have friends. I love and am beloved. Sure, I may process things differently and it may be uncomfortable for me sometimes. I'm not relaxed or laid back. I will never be "chill." I deal with significant anxiety in relation to my sensitivities. But I'm still standing - quite well, I might add. I turned out alright.

So instead of fighting us or distancing yourself from us, learn from us. Read our posts and see your own children. See the children we were as we struggled alone with an unnamed something. So many of you already have. See what you can glean from our expressive wisdom and toss the things you find less on-point. It's our honor to speak for your children and to take your hand and lead you through our challenges and triumphs. We want the next wave of sensory children to fare better than we have. Doesn't every generation want more for those who follow in their footsteps?

At the end of the day, though, it's our responsibility to come to the aid of others like us, as my friend did through her blog post. We lost children must reach out to one another and pull each other out of the whirlpool. We must hand one another a towel and a warm mug of tea. We must be each other's champions, especially since our older voices often get lost in the shuffle.

We are truly overjoyed to serve you, but it is ultimately our duty to serve each other first.

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Shameless Self Promotion: Want to learn about SPD from a delayed-diagnosis sensory adult's perspective and hear more from yours truly? Pre-order Making Sense: A Guide to Sensory Issues today!

Wednesday, September 9, 2015

Anxiety Becomes Her

A few nights ago, sometime between a quarter to pitch darkness and half past the witching hour, I lay wide awake across our soft, twisted sheets. The bits of me just along for the ride - my limbs, my chin, the tips of my fingers - had long gone to sleep, sinking heavily into the mattress and pillow with every whir of our table fan. Exhausted, the vital rest of me - my torso, my head - pulsed with electricity. Not the sort of electricity that you may imagine when two protagonists finally sidle up to one another on the movie screen, tossing scalpfuls of shiny hair and shy smiles as they laugh and touch and kiss for the first time, cue the fireworks. The kind of electricity that sparks from faulty electrical work and burns down the refurbished colonial on the corner. The kind of electricity that powers a wood chipper.

After counting sheep and deep breathing and peaceful visualization and twisty yoga poses, after reviewing the plot of every sincerely lovely Sloane Crosley chapter and every calming, rhythmic episode of Frasier over and over in my head a single phrase remained:

Anxiety becomes her. 

Because even after months of poor sleep, I am apparently still poetically perceptive.

The phrase cycled through my brain again and again. I could feel my racing heartbeat pounding in my teeth.

Confession: it's hard these days to tell me from my anxiety, to split the conjoined twins at their seam. Big life plans and changes are the culprits, especially as I attempt to move through this world unmedicated. And my anxiety? Well, it's something I've earned for the strange decades that I existed without my SPD diagnosis. We'll call it a badge of valor. In the middle of an already pretty complex neurological condition is yet another, psychological condition. It's like a set of Russian nesting dolls.




















Peek-a-boo

In psychological terms, we call this a "comorbid" condition, which means the two exist together. In delayed-diagnosis sensory adults like yours truly, secondary "comorbid" psychological conditions often tag along. It's not just SPD, it's SPD with a weighty dash of a mood disorder or an anxiety disorder. These comorbid conditions span the gamut from ADHD to anxiety and depression, and some psychological conditions even look so much like SPD that professionals often insist they (and not our difference in wiring) are at the core of our concerns. In reality, they're like buying a bottle of sunblock and getting a second, trial sunblock absolutely free. Two for the price of one? Thanks, The Universe!

I believe that something like anxiety or depression, when it comes about for delayed-diagnosis sensory adults, is the result of our undiagnosed engagement with the sensory world, as well as our particular neurological makeup. I didn't know that strobe lights weren't scary outside of my perception of them, and I didn't realize that undulating crowds weren't inherently bad because I couldn't pinpoint where my fear lived. No one ever helped me connect the dots. I just knew that sometimes I felt sick somewhere inside and detached from my surroundings, but because I didn't know what was triggering these feelings, I couldn't predict when I'd feel that crawly, floaty, overwhelmed way. I learned that things were to be feared, but nothing was scary in particular - nothing tangible - just everything everywhere. I also learned that something was "wrong with me," that I was "different," and that sometimes, when I didn't go with the grain, I was "bad" and a nuisance to others. Along with this came shame, guilt, and the fear of drawing attention to my undefined sensitivities. And so I began avoiding many things. In time, I learned to fear much of everything.

And you wonder why anxiety becomes me, why anxiety and depression and a myriad of comorbid psychological conditions become you and your delayed-diagnosis sensory loved ones, and especially why these conditions are so hard to unlearn. My experience of the sensory world has always been through the context of fear. The sensory world is all around us, and so fear pervades everything in my life, with or without therapy and medication (clearly much less with both of these crucial components). We call this Generalized Anxiety Disorder, because the anxiety is literally generalized across all areas of one's life experiences.

These are the sorts of things that come to me late at night as I struggle to breathe through the vice of anxiety and find some proprioceptive calm underneath my weighted blanket. Life is complicated for all people. Life for people with SPD is even more so, and life for those of us like me who didn't come to their senses for many, many decades is sometimes wracked with truly painful, invisible, internal struggles that even this typically optimistic advocate can't nice away.

Most days, it's my SPD center stage and my secondary anxiety disorder waiting in the wings, like a shadow. Strip away sleep, one anxious moment at a time, and I am at the mercy of both, the sole audience to the eerie, unseen pirouette and bow.

****
Shameless Self Promotion: Want to learn about SPD and hear more from yours truly? Pre-order Making Sense: A Guide to Sensory Issues today!

Wednesday, September 2, 2015

Adult SPD Pride, Pass It On

I bet you can't find two more proud SPD adults than me and my "lil sensory sister," the uber-talented Kelly Dillon, author of the illustrated sensory blog, Eating Off Plastic (aka the illustrator of my sensory guidebook, Making Sense: A Guide to Sensory Issues - shameless plug, check!) The other day, I emailed Kelly to say, "hey artist friend, we need some sort of adult SPD pride image to share on social media," and because Kelly and I clearly share a brain, she said she had recently started to put something similar together. We talked deets, and today she sent me this nugget of glory:


































Yes, those are our faces cartoonified (I am the blue glasses maven, Kelly is Ms. Hat). So here's the deal. Are you a sensory adult? Well, now you have this nifty cartoon to post all over Facebook and tweet like a little birdy to show your sensory pride and remind everyone that you know that adults have SPD too. We're only a month away from Sensory Awareness month, so what's your excuse? You know you wanna.