Monday, October 30, 2017

My Sensory Halloween: A Retrospective

Pretty Princess
Halloween and I have always had both a loving and clandestinely stormy relationship. As a child, unaware of my unique neurology and willing to do pretty much anything for a single Reeses Peanut Butter Cup or Kit Kat bar, I outwardly loved Halloween - beautiful costumes! Sparkles! Crowns! Chocolate! - and I inwardly hated it - roaming from strange apartment to strange apartment and brightly lit hallway to brightly lit hallway in the quest for my beloved candy. I was, after all, an undiagnosed child with Sensory Processing Disorder (SPD).

You'd never have known my displeasure back then, though. I wouldn't have had the words to explain the anticipatory anxiety I experienced every October 30th, or the discomfort and detachment I felt from the fluorescent lighting and echoed stairways, and the fear of who and what was on the other side of the door after we yelled, "Trick or Treat!" (and the noise and movement that their presence would introduce into my already atypical, un-patterned evening).

I never would have admitted that I struggled in any way, shape, or form with Halloween or anything that strayed from the norm of my social group. We were 80s and 90s American kids, and so naturally, we went trick-or-treating. How would I have begun to verbalize why something like this, something deemed fun by my peers, was any sort of an issue for me?

Captivating Cat
Blushing Bride

And yet, Halloween is still one of my favorite holidays.

Much like I wrote about in the post, Here I Am (Say Cheese)when I'm in costume, I can pretend to be anyone feeling anything. 

It's always been that way for me.

As a kid, this meant dressing up and feeling more than myself. While I couldn't stand the feel of lipstick on my lips or eyeliner on my face (something else I would have never, ever admitted for fear of ruining my costume and my sugar prospects), I knew both helped to transform me into that extra special version of me - one that was less sensitive and had no questions or unexplainable quirks - and instead was bold and shiny, all while being just another kid in the crowd. I wanted people to look and comment: what a pretty kitty! What a beautiful bride! - because that's all that they'd see about me and that's all they'd need to know. How simple to merely be that one, uncomplicated thing. How nice to take a short detour from certain aspects of myself.

As an adult, I still insist on dressing up for Halloween.

Exhibits A, B, and C:

Kate from the t.v. show Lost

Janice the Muppet from Dr. Teeth and the Electric Mayhem

Baby's First Halloween Costume

. . . and honestly as frequently as society allows (ANY excuse to wear a tiara is legitimate, IMHO). I think it harkens back to that same feeling of pressing pause. A butterfly isn't complex. A butterfly doesn't have sensory issues or anxiety disorders. It doesn't lose its connection with the world when its brain decides it's overwhelmed and needs to pause. It is the unfurl from a chrysalis and gossamer wings. It's the freedom to be temporarily free of unusual intricacies. 

Beautiful Butterfly
This year, my Handler and I will be dressing up to match our daughter, and the two of us will take her trick-or-treating for the first time. It's fair to say I've never been more excited for a Halloween. At 9-months-old, our little girl won't remember this day - how her costume got lost in the mail, how her dad and I had to scramble and get very creative to recreate it - but she'll relive the day sometime in the future through photos. I can't say for sure who she'll be then and what her relationship will be to either Halloween or the sensory world. I don't know much for certain yet. When it comes to babies, every day is an adventure with a brand-new roadmap.

I do know one thing, It's something I whisper to her as she sips away at her bottle, fighting to stay awake; something that I hope she stows away somewhere in her rapidly developing mind. She'll have the sense that she, too, can be anyone feeling anything in this lifetime, whether or not she happens to be wearing a costume. 

Monday, August 7, 2017

To the Pharmacist from the Woman with SPD

What you saw:

Under-slept, over-worked new mom of 6-month-old came to the drugstore to pick up her prescription and forgot her ID, and then strangely and awkwardly cried when you said she couldn't buy her medicine without that piece of identification, before gathering her other bags and heading back out into the haze of August.

What you didn't see:

Adult with Sensory Processing Disorder woke up for the fifth day in a row thinking - do I feel able enough today to make it to and through the drugstore to pick up my medication this morning? Did I sleep well enough last night to help soften the blare of traffic noises and intense fluorescent lighting required to make this trip a success? Can I manage the transition both in and out of the store and through the steps of the transaction without losing my tenuous grasp on the world around me today? 

The debate that lasted through breakfast, caring for infant daughter, sending husband off to first day at new office, starting own work. Do I feel able enough?

The question of need vs. ability: I need the prescription, can I handle the actions necessary to meet the need? What happens if I don't have it? 

The feelings of shame and guilt, of having to pawn an errand off on someone else, albeit a loving and well-meaning someone else who gets the intricacies of living with SPD. The feeling of sudden empowerment, of I can do this silly little thing! Of wanting to rock and own the very thing others take for granted.

The wishing it was fall so I could locate the ends of my body again. The wishing I was neurotypical so I could just run the damn errand like a sane, logical adult who needs something done.

The sense that logic has nothing to do with differences in neurology.

And then: the decision made somewhere between the second and third floors as the elevator descended. I can do this today, I am able enough. The bold, short walk through the thick air that feels ready to burst into rain. The sliding doors and the densely packed aisles. The syrupy music and sharp lighting.

The Pharmacist. The request. The missing ID. The tears of but look how much I went through just to get here, just to pick up this little thing like a capable adult. The tears of but how will I do this all over again if I went to fetch my ID? How will I tell my handler, yet again, that I need his assistance? 

The sense that he'd never understand, even if I explained it in great detail.

The shame. The guilt. The exit from the pharmacy and back out into the summer air, restless.

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?

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.