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Thursday, July 13, 2017

A Sneak Peek Into My Sensory Meltdown/Shutdown


In an ongoing effort to destigmatize sensory meltdowns and shutdowns, and humanize SPD in general, here I am last night in the middle of what I can only call a mix of both a meltdown and a shutdown. I'd "Hit the Deck," as I like to call my need of laying supine pressed against the floor, and I went back and forth between angry-tears and staring into space. I thought of you all in this moment, how the members of the sensory community all do this when we've been pushed too far, when we're taxed and burnt out and overwhelmed by endless input and processing, and I took a single photo.

I almost didn't post any of this. I looked at this picture today and immediately felt ashamed of my behavior and my need to lose composure, and embarrassed by my differences in neurology. That's when I decided it needed to go up. It's why I'm here. It's why I do what I do.

To the person mid-meltdown or mid-shutdown, tight-lipped with the glassy eyes, I see you. You are a wonderful, worthy person. This moment doesn't define you. Hit the deck, cry, scream, stare. Breathe. Reconnect. Think of those who love you and who you love. This moment will pass, as all moments do. Mine did. The next moment and the one after that are new, brighter. They belong to you.*


*Originally posted on Coming to My Senses on June 30

Tuesday, June 13, 2017

Sensory Snapshot
























Photos aren't always as simple as they seem.
Found this picture on Facebook's On This Day feature, snapped by my Handler on June 12, 2010. It looks like a pretty composition of flowers with me, hazy, moving down the street on the left. What you can't see, and what I remember about this moment, is we had to walk a good 15 city blocks back to our apartment, and I was in full-blown #sensory overload - even on this seemingly calm and beautiful street. The day was especially warm and white and overwhelmingly bright, and we'd just come from a few hours of visiting our friends' new baby. I was burnt out from the engagement and uncomfortable in my skin and in my clothes and I just wanted to be back in our safe space with the AC on. I think I walked strides ahead of my Handler (again, back before I knew how powerful and helpful holding his squeezing hand could be) the entire way, frantically chasing down our final destination in my attempt to stave off a shutdown and seek safety.
It's this sort of subtle way that #SPD hides in plain sight: the woman speeding down the street attempting to escape from her own neurology, desperate to touch some sort of base like in her childhood games of tag - the bushes and stoops that surround her, a jumbled blur that her brain can't quite piece together; the painful sound of sirens and cars whirring by. Many feet behind her, the man snapping pictures of what he deems beautiful.
And aren't we?

*Originally posted on Coming to My Senses on Facebook on 6/12/17

Thursday, April 20, 2017

The Sweetest Tool in My Sensory Arsenal

You guys.

Why did no one ever tell me that babies make for the best sensory tools?!

Yes, I know my 12-week-old daughter isn't a sensory tool . . . per se. She's a human being with an infectious smile and the most delicious coos and she loves me, possibly more than anyone's ever loved me before (we're in this phase where I walk into a room, she either hears or sees me, and her face erupts into wide grin after wide grin) - but in the midst of her tearful cries and the raise of her tiny arms, when I hoist her small frame onto my torso for a cuddle, she becomes - for a few moments at least, until she wiggles away like a tiger cub - the best sensory tool I have in my arsenal. Who needs a weighted lap blanket when there's 10ish lbs. of sweet-smelling, tactile-pleasing-fuzzy-headed mini-me right under my chin pressing deeply against my chest?

Perfection
Throw in the Baby Bjorn, my beloved and trusted baby-wearing carrier, and I'm a happy SPD adult these days. For me, nothing feels more prioprioceptively grounding than trekking my infant around, strapped to my body.

Birds-Eye Bjorn View of Bow-Hatted Babygirl

Delayed diagnosis sensory adults who are also parents of infants, may we relish our children for their intelligence, energy, and beauty - but also for their natural way of supporting our sensory needs.

Except for the screaming. I'm pretty sure we could all do without the screaming.

Monday, February 20, 2017

On the Newborn Life. Sleepless Nights, and Flexibility

Sensory Friends! I'm officially a mom.

On January 27, 2017, without much warning or enough preparation, I gave birth to our tiny, sweet, and headstrong baby girl. She wasn't due for another three weeks at least, but on day four of a ceaseless headache, I was diagnosed with preeclampsia, a condition related to elevated blood pressure and swelling that, when gone unchecked, used to kill women only a century before. The cure for this headache, said my doctor, was delivery. Talk about a strange remedy.

Walking from the doctor's office to the hospital, me in tears while calling family and wishing we'd found time to complete our birthing course, the Handler in best form scooting me and our almost-baby around the world, something my mom had begun saying lately started really resonating with me: be as flexible as you can. And as someone with Sensory Processing Disorder (SPD), I am rarely - if ever - flexible with surprises that come my way. Unexpected happenings come with a deep degree of unpredictable sensory information - strange locations, sensations, experiences. They're especially frightening and taxing. But on January 26, I was in no position to have a choice. It wasn't a case of well thanks, Doc, I'll take your suggestions into consideration. Let me sleep on it! Let me finish packing my hospital bag and schedule time off from work and really deal with the fact that our lives are about to change in unspeakable ways. There's no "let me cope first" time once a medical diagnosis has been cast.

I'll sum up the 23 hours of induction and treatment and labor (and the 72 hours that followed) as a hazy, medicated mess. I was on some crazy and necessary substances to keep me and the baby safe from symptoms like seizures, and they have turned my memory of the day and the days that followed into a weird, haunting haze. Looking back, I feel like someone who experienced some sort of trauma. In the first week, I'd startle awake at night with a foggy, scary half-memory that I'd clarify with the Handler in the morning. Did that really happen? I'd implore, trying to connect fragments of experiences to piece together a story. In the hospital, the doctors and nurses commented on how well I did, how nice I was, how flexible and calm I remained through delivery and long after. This is not a memory I have, it's one that's been reinstated for me by my husband and parents, who did most of the communicating for me once the medicines had kicked in and I was MIA. Although I have to say, I very clearly remember delivering our daughter: how powerful and capable I felt with each push.

But enough about that. I love that human beings have the capacity for forgetting the explicit details of pain, and with each day, whatever minutiae I registered fades further. Our daughter is a gorgeous mix of our features, and when she's not struggling and crying with what we think could be colic (and what I suspect may be some early sensitivities - only time will tell), she squeaks and coos and makes adorable kissy sounds. At two days old, she was already holding her head up on her own, and at just over three weeks, her legs are so strong that she finds a way to stand up in our laps - as small as a table lamp and already seemingly ready to walk away and lead her own, independent life. And though she be but little, she is fierce. 

The challenge for me now is the chronic exhaustion and limited sleep, which would've wreaked havoc on my sensory life long before our baby girl arrived, and now just has me living in a daze with my postpartum body attempting to make sense of proprioceptive input (or lack thereof). I suppose it doesn't help that I dropped my full pregnancy weight gain of 25 lbs in 11 days thanks to my medical condition, although it sure is nice to wear my old clothes. While out on maternity and paternity leaves, the Handler and I have been sleeping in six hour shifts, giving the other a chance to be baby-free and really rest, although six hours seems like it'll never progress to seven or even eight, and 5am on a Sunday is really the loneliest time all week (take it from one who knows).

Funny, I'm now looking forward to change. I can't wait for this little girl to sleep later into the night, to grow so we can keep her ever-hungry belly fuller longer. I know with these anticipated changes, there will be new challenges, new reasons to be as flexible and bold as I can as we face the unknown together.

Monday, January 16, 2017

Now I Recognize You, Now I Don't

Lately, the people around me look something similar to this:


Or maybe something more like this:


I feel as if any capacity I once had to recognize new people has completely vanished. It's not that my eyes are blurry and I need my vision checked. My sight is just fine. Instead, it feels like I'm struggling to process new faces - as if I have no discernible feature to hold on to as I add new people to my catalogue of facial memories.

To be fair, I've never been particularly adept at facial recognition. Growing up in Manhattan in the middle of New York City, you'd think I'd have some exciting stories to tell of the famous people I'd accidentally bumped into while waiting for the subway or traipsing down Madison Avenue, soda in hand. But aside from a walking companion frantically waving after a few celebs I couldn't visually place, I've not once to my knowledge shared the sidewalk with a star. I now blame most of this on my SPD, especially my penchant for avoiding visual stimuli because it's just so overwhelming. When I'm moving through the sensory chaos of the world, I'm too preoccupied as I contend with the onslaught of flashing lights, passing voices, and the perpetual whirl of a city that never sleeps to stop and notice the people that stagger by - and especially process their features.

Recently, eight months into my first pregnancy and as dumb as I've ever been (yes, pregnancy brain is insanely real), what little capacity I've had to identify newer people I see on a semi-regular basis seems to have diminished completely. My Handler jokes with me about this issue, calling everyone I don't recognize, a "hat rack." I see a whole bunch of hat racks these days.

Meet my BFF

Take for example the recent widower on our floor. We've only been living in our new apartment for a few months, and this is a man I've only met a handful of times. The first time we met, I identified myself as my grandparents' grandchild (they were well-known in this neighborhood for their clothing boutique), and I watched the delight spread over his face as he recounted stories of running into them along the main avenue here. Once his wife passed, a few weeks into our residency, I had the urge to ring his doorbell - or to at least be prepared with words of condolences and big hugs should I come across him in the hallway. But honestly, for the life of me, I could not picture a single feature of his face. If he was forced into a strange Police lineup of recently bereft septuagenarians, I wouldn't have the faintest clue how to find him and say I was sorry for his loss. I ran into him in the company of my Handler recently, and from the cues around me, I gleaned that this was, indeed, our widowed neighbor, and I leapt right in for that bear hug and meaningful conversation about the loss of his wife. As he walked slowly away, I whispered to my Handler, "that WAS him, right?!"; me, still completely unsure, even after our discussion.

Then there was the smiling young mother pushing her carriage of twins through the produce aisle of the supermarket. Earlier in the day, I'd completely missed the greeting of a woman I see daily on my morning walk, screaming hellos back to her after we'd passed each other by half a block, startling her young charge. And now, hours later in the brightly-lit and densely-packed supermarket, my Handler and I came across someone else I should've recognized, having met her, her husband, and her two babies a few times in our elevator lobby since the fall. "Hi! Nice to see you. When are you due?" she asked as I was midway through maneuvering around her on the hunt for pink lady apples. I stopped and stared blankly at her warm grin, then down at her twin babies. "Hi guys!" I cooed at the infants before gazing back up at the unfamiliar face. "In a month!" I replied, feigning intimacy and familiarity with no true sense of who I was supposed to be connecting with in the moment. She told me to be well and that we'd see one another again soon, and as she turned away, I once again whispered to my Handler, "is that the lady with the twins from our building?" "Yes," he reassured me, knowing that I was only seeing a hat rack and her tiny, baby shoe racks.

I can't decide what's more true in this case: with my black plastic nerd glasses and sizable baby bump and with my husband's vibrant reddish beard, it's hard to miss us as we move together through the world OR in the past eight months, a semi-sensory-related issue of mine has (hopefully temporarily) grown tremendously, especially in light of living in a large, new community of people. I suspect it's a bit of both. Regardless, it's made my journey through the sensory world even more special. It's enough to manage eight senses' worth of intensity and dullness, seeking some sort of equilibrium as I attempt to go about my journey. But now, muddy-minded from pregnancy and suddenly unable to delineate strangers' faces from those of new acquaintances, the world outside my front door feels even more mysterious and uncertain: a veritable department store of empty hat racks, and me, squinting, trying to place even the smallest fraction of a feature.

Wednesday, December 21, 2016

Sensory Like You Has Been Published!

Great news, Sensory Friends!

My second book, Sensory Like You: A Book For Kids With SPD By Adults With SPD has been officially released. Published by Sensory World, this book was a labor of love by illustrator Kelly Dillion of Eating Off Plastic and yours truly, with the goal of reaching children with Sensory Processing Disorder. There are so many books out there about SPD for kids, but this book is the first of it's kind, as it's the only book created entirely by SPD adults for SPD kids. Based on How One Adult With SPD Wants to Explain This Condition to Your Sensory Child, which was published by The Body is Not An Apology , it's like a mini guide to SPD and self-acceptance for the under 10 set.


You can order your copy on Amazon or Barnes & Noble today - or if you're in Portland, OR (one of my favorite cities!) you can visit Powell's City of Books for your copy.

Friday, October 21, 2016

Since I've Been Gone: An Update in Four Parts

Hi CTMS Readers,

Yes, I'm still very much alive and nope, I haven't abandoned you! It's just been a whirlwind of transitions and excitement since the spring and the summer, and I've been chasing after these life events trying to keep up with them and you.

Because there are four big things going on right now, I've called this post an Update in Four Parts. Most of you know these pieces from following me on social media, but I'm going to sum them up here.

1. I'M PREGNANT!

Yes, if you haven't heard the good news, it's very much official - my Handler and I are expecting our first child, a little girl, on Valentine's Day 2017. We found out in June, kept it a secret until August, and have been shouting it from the rooftops ever since!



In terms of pregnancy and my SPD, I'm finding that being pregnant has actually quieted down some of my more severe sensory sensitivities. I know that hormones ultimately have an impact on sensory symptoms (something that SPD researchers haven't fully understood just yet), but I've never been less anxious and more grounded than the past few months. I suspect some of it might have to do with proprioception - I suddenly weigh more and perhaps I'm feeling more connected to the physical world around me. Regardless, I'm excited about this next phase of our family and our lives.

2. WE'VE MOVED!

Much like the last post discussed, we moved to that exact neighborhood in September - and let me tell you, for all of the packing stress, moving stress, and being-in-a-new-location sensory stress, I absolutely love it here. The neighborhood is quieter and more family-oriented than our last, there's lots of greenery (we're on the cusp of what feels like city and suburbs), and I'm steps away from some local restaurants. It's also the neighborhood my dad grew up in and my grandparents lived in for over 40 years, and I spent many happy weekends here, so it's nice to be back. Again, with #MySensoryPregnancy underway and the crisp cool fall weather, I felt comfortable walking around here almost immediately.

3. MY NEXT BOOK IS DUE OUT IN NOVEMBER!


A joint effort between me and my favorite "lil sensory sister," Kelly Dillon of Eating Off Plastic, Sensory Like You is the first book for SPD kids written and illustrated by SPD adults. It's being published by Sensory World and should be out sometime in November. We're so excited to have the chance to engage kids directly to teach them a bit about SPD and remind them that having a neurological condition doesn't make them lesser-than - it makes them wonderful and special. 

4. I'M SPEAKING AT THE STAR INSTITUTE'S 3S INTERNATIONAL SYMPOSIUM!

I've posted a bit about this one on social media, but I'm honored to have been asked by the STAR Institute for SPD (formerly the SPD Foundation) to speak at their international symposium in Seattle, WA on November 4. My presentation will be all about my life with SPD, along with the lessons I've learned along the way and tidbits for parents to better understand and support their SPD child or teen. Nerve-wracking as always to be on stage under bright lights speaking into a microphone in front of strangers for an hour, but I'm especially looking forward to this particular presentation. 

That's my wrap-up, so hopefully we can call it even and just move forward from here. I love this blog, I love that I have the opportunity to reach out to all of you and help you connect with your own sensory lives, and I hope that once things settle down a bit post-Seattle, I'll have the chance to update my blog even more. If you miss me in between, be sure to come find me online - especially on Facebook where I make it my mission to post and connect as often as possible.

xo

~Rachel

Friday, July 22, 2016

The Sensory Challenges of Moving

MOVING.

For a totally innocuous word made up of harmless letters, this one makes my skin crawl.

Cue the screams

I'm sure someone out there loves the premise of packing up their lives and setting out on a new residential adventure, whether local or abroad, but that someone is surely not me. As a person with SPD, I'm the Queen of Routine, the Siren of Sameness, the Darling of Doing Things on Repeat. The more things are familiar and well-established in the basic and required areas of my life, the happier I am; the better I'm then able to cope with the rest of the universe's surprises. The most important piece of this, outside of my amazing Handler, is our home. And although we're not moving just yet, we're in the process of looking.

Nom Nom Nom
via http://www.dismuse.com/2010/06/houses-faces/

SIDE NOTE: If you're curious, I use the term "home" loosely. Born and raised in the middle of Manhattan (and still a city dweller to this day), for me, "house" actually means "apartment." I don't personally get the appeal of a free-standing, ground-level dwelling a mere door away from ants and raccoons and the local band of roving townies (to each their own), but I understand the concept of a series of boxes stretching into the sky. I like to see for miles and pretend I live in the clouds.

Regardless, especially since I work and live in the same space, it's crucial for me to feel 100% comfortable in said space. And this is why the idea of moving freaks me out to the very depths of my inner being. Besides the impromptu touring of unfamiliar locations and new neighborhoods at inconvenient times, the picking the best streets closest to the best shops and transportation and schools, for a person with SPD, the entire apartment-hunt-moving process involves a secondary level of complication and questions:

"Can I handle living here?" 
"Will this be a positive sensory space for me?"

The most fun part of these questions is there's no clear or immediate answer. You can't, say, camp out on the floor of an empty apartment and wander the streets for a month to see if in fact you can tolerate the new location. You can't knock on the doors of your closest maybe-neighbors and ask them to have their dog bark as loudly as possible to gauge the sound levels or draw the curtains tightly to estimate the degree of darkness that will saturate your bedroom each night.

Mostly, for me, I can't properly read how my body will feel in the (albeit temporarily) foreign residence. Proprioception, and my brain's refusal to identify where my fingertips end and the world begins, means that I can consider a new space with a full heart, but I can't entirely be sure how I'll ultimately adjust to it or how quickly my differently wired body will feel at home and finally be able to rest.

Skeptical Roof is Skeptical

Once again, what is a neurodiverse life without the perpetual need to leap somewhat blindly into the great unknown? (I'm sure that's life in general, so imagine doing it with a different set of processing abilities!) While we're not boxing up our lives quite yet to take this particular leap, I see the general icky haze of moving looming somewhere in my future. It'll be for a good reason, a good cause: a space that fits our phase of life and current needs. We'll hopefully love it there. We'll make new memories. In time, my senses will adjust to the new set of circumstances. Mind-blowingly, the newness will become part of the routine, the sameness. Until then, though, I'll cling to other stable and familiar things. The click of this keyboard, say, and the words I'm writing to you.

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

Tuesday, June 14, 2016

My Interview with Mosaic Science - "Why are so many of us over-sensitive?"

Exciting news, reader-friends! Back in April, I was contacted by a journalist in the UK at Mosaic science who was in the process of writing an article about Sensory Processing Disorder and related sensitivities. She traveled to Chicago to see me speak at the city's first Sensory-Friendly Cultural Programming Summit, as well as to interview me about my life with SPD.

The final article, Why are so many of us over-sensitive? was published today, and I'm so thrilled with the result, as well as proud to be affiliated with some truly amazing people in the field of SPD.

Take a peek at the piece here: http://mosaicscience.com/story/highly-sensitive-people-sensory-processing-disorders


Thursday, May 19, 2016

The Odd Couple: SPD Mind vs. SPD Body

It occurred to me this week, as I sprawled out on the floor deep in the throes of a new relaxation and visualization program, that I've been living under the same roof as the most unhappy couple I've ever met. Although these two occupy the same general space, they warm disparate corners. They make no effort to connect, aside from speaking ill of one another in off-handed, awkward comments to well-meaning, mutual friends. For the most part, their feud is silent - a behind-closed-doors iciness that escapes anyone who'd see them together pantomiming the actions of being fine. The truth is, it takes work for them to play pretend. They only stay together because they have no other option.

And no, I'm not talking about actual flesh-and-bones people whose relationship has been pushed past some emotional expiration date. It's something else entirely:

My brain and my body have become as foreign to one another as a couple on the brink of a divorce.


I know it's a strange concept; crunchy and froo-froo and oozing with images of healing crystals and long-haired hippies chanting Kumbaya. It was as uncomfortable for me to realize this as it may be for you to try to make sense of it. After all, aren't our minds and bodies part of the same entity, Team You? And don't they just automatically work together?

Clearly, they don't always.

Here's how it happened. The woman leading the guided visualization said, "now picture something in the natural world, like a mountain range, and see how it connects your brain and your body together. Allow them to have a dialogue." For a moment, I felt startled and forced my eyes open. "What do you mean, connect my brain and my body?!" I thought frenetically, on the verge of tears, "I can't connect my brain and my body!" And then it hit me hard as heavy, heaving cries began to erupt from somewhere deep in my stomach. My brain and my body hate each other. 

Let me explain. In living my life with SPD, I've come to accept a few unusual and necessary rules. I won't have a typical reaction to many typical scenarios, especially if sensation is required. I will lose my already tenuous connection to the sensory world if pushed too far. I will fight some primal urge to bite and cry and fling my body against hard surfaces when in public. I will hug every single person I meet without exception. These tenets, and actually my entire neurodiverse life, gravitate around one general concept: my brain processes differently, and so my body behaves differently. Because my brain is wired this way, I smash into most objects in my path. I can't always tell where my fingertips end and the outside world begins, so I lose my physical being in space. Sights become sharp and piece-y when I've reached some processing threshold and sounds feel as if they're trapped somewhere deep in my skull.

What's at the root of all of this? My brain. What suffers the consequences? My body. It's no surprise that the two refuse to get along.

I like to think that in between my brain and my body is my "mind" (or maybe even my "soul") - the piece of me that make me quintessentially "Rachel." This is the thoughtful, loving, empathetic bit of myself. When I share the message of acceptance and champion embracing differences, it comes from this area, and although I work with myself daily to nurture and accept my differently wired brain and celebrate and love my differently impacted body, I've never stopped to referee between the two of them before. I've never forced them to sit together in the same room and make peace.

If you're wondering, my "mind" (my "soul," my innermost-me, whatever you want to call it) chose a bright blue, flowing river as the natural imagery connecting my brain and my body, like a spine. I imagined that it was a chilly autumn day and the maple trees were turning shades of orange, yellow, and red. I hinged my being forward over the rushing water, trailing my fingertips along the stream, letting the motion move each digit. Faintly through the din, I thought I heard whispering. Something like, "I'll try to learn to trust you," and maybe even, "I love you" and "I'm sorry."