Monday, September 27, 2021

The Year of Absent Blog Posts

*Waves*
You know it's been a long, long time between posts when your followers start reaching out to you with some concern. That started happening last week, and it caught me by surprise. Surely, I thought, it hasn't been that long since I've posted to this blog and to social. But yes it has. My last blog post was in January and we're just a few days away from October. So what happened? Why have I spent so many years voraciously posting here to take an unplanned, extended absence from my life of advocacy?

I don't know. I mean, I can take a guess. Single/divorced mom working full-time with sporadic external support and endless demands during a long pandemic seems to capture the essence of it. There's just less time to connect - with myself, my world, and you - and the time I do have has been dedicated to the care of my delicious daughter, my challenging work, and my wonderful (and new to you) boyfriend (!), who you'll be glad to know is one of the most solid, smart, well-educated, and loving humans on the planet. (At least I've learned valuable lessons from the things I've been through.)

This sounds weird, but there's less time for SPD in my own life. I still have the same sensitivities and challenges I had the last time we "spoke," but I've had to put my own needs on the shelf over the last few years to survive. As many of you remember, I was living through truly horrific and unprecedented times before we all started living through globally unprecedented times. I haven't stopped to survey my sensory life because much of the time, I just don't have a minute to stop.

Seeing as I'm giving myself a few moments now for sensory-related reflection, here are a few noteworthy things I've learned or encountered (or created!) since last we spoke:

1. The Teen Guide to Sensory Issues

I wrote a third book!

WOOHOOOOOOO!!!!!!!!!!!!!!! Meet my third book baby. 

At a conference in the spring of 2019, someone asked if I had written a book for teens with SPD. It's something I'd always had planned in the back of my mind, especially since I lived as a teen with undiagnosed SPD and the wrong anxiety disorder diagnosis. I started writing the book in my old life, and I honestly didn't know if I'd be able to pick it back up once I woke up a single mom in a brand new life. Lucky for me, my editor and publisher were supremely supportive of me, the losses I'd experienced, and the life transition I was making, and they gave me lots of time to work on the manuscript. Like . . . two years' worth of time. The book launched in late June. 

Some days, I thought I'd never finish it. While it's healing and satisfying to have written about a difficult time in life, it's challenging in the moment to face those difficulties, make sense of them, process them, capture them, and then put them neatly away.

It was in my early teen years that my undiagnosed sensory symptoms really surged. It was when I had my first memorable shutdowns and meltdowns - it was when my anxiety really bloomed and I felt like I was doing daily battle with some unnamed thing. Writing about all of that - my first love and my first job and my first best friend - all in the context of the unnamed thing left me having big feelings. And with my life just beginning again right before the pandemic, I was already Queen of the Big Feelings. 

I'm not sure who to credit with pushing me through the writing process, but I know my mom played a big part in keeping me calm and focused (not a far stretch given her existing role in my life). Writing this from the other side, I'm so glad I stuck with the book and finished it. It tells the stories of my undiagnosed SPD teenagehood memoir-style before diving into advice across a range of topics. I hope you check it out for you or your teen on Amazon or Barnes & Noble.

2. The Sensory Perks of a Covid Mask . . .

A gentle heads-up, I love you and care about you/your child/your partner/your loved one's SPD, but I'm truly not here to debate or discuss your personal feelings on wearing a mask during a pandemic. I'm a woman of science and I'm doing what I believe to be the safest things for vaccinated me and my someday-vaccinated kiddo. BUT I've learned something interesting from a sensory perspective about wearing a mask. I used to wear blue tinted glasses in my daily outdoor journeys. When Covid hit and I was wearing a mask during every trip outdoors, I realized that I felt too claustrophobic wearing my blue tinted glasses too. And so I took the glasses off. Weirdly enough, I found my visual processing to be about the same - that is, I didn't feel especially challenged or overloaded by my visual field like I used to pre-mask and pre-pandemic (and the reason why I was wearing blue tinted glasses in the first place). I took this puzzling little nugget to my optometrist over the winter, and she said the most obvious and brilliant thing: when you wear a mask, about half of your visual field disappears

So of course I didn't feel like I needed my tool to process vision - the tool to keep me safer from Covid was also helping my eyes to feel less overwhelmed and inundated with information because it blocked some of what I used to be required to see. I'm wearing my glasses less, even when I don't need a mask, and most of the time feel better able to process the visual world. I call that a tiny pandemic win.

3. Working My Way Back to You (Babe)

So yes. I've been absent, but I really haven't been completely gone. I think I'm learning that in advocating for anything, a person has to make room for the way life ebbs, flows, and changes. I suspect there'll be times in my life where I can't blog enough about what I'm experiencing in my sensory world, and there'll be moments, like right now, where a bunch of other things necessarily have to come first. Either way, I hope you forgive me. I hope you know I'm still right here. I hope you know I'll write you back in time. I hope you know I'm collecting memes like nobody's business so I can share them again with you. 

Sending love and I know we'll connect again soon. 

Tuesday, January 19, 2021

Bearaby's Napper: The Weighted Blanket That Holds Your Hand

 Sensory Friends, I'm in love!*

*with a weighted blanket. 

Yes, you heard me. I'm in love with a weighted blanket. 

A few months ago, the good people over at Bearaby asked if they could send me one of their weighted Napper blankets to review. I should first mention that I'm a decade-long connoisseur of weighed blankets and other weighted things. I own two weighted lap pads, two weighted blankets, a weighted scarf, a weighted stuffed animal, and two weighted sleep masks. Basically, if it's weighted, I'm game. 

Like a good little student of life, I googled "Bearaby" and up popped these beautiful, colorful woven blankets. There they were in shades that sounded delicious: Butternut Bliss, Evening Rose, and Moonstone Grey - casually sprawled across modern couches and cozy armchairs that I'd give my right arm to own. West Elm features them in their store. HGTV and Insider reviewed them. 

I skeptically looked up from my laptop and scanned the room, as if clearly they intended this email to go to someone else, someone cooler and luckier than me. Realizing I was alone (and it was, after all, my inbox and my laptop), it hit me that they were actually talking to me. They wanted to send me something beautiful and useful to try. My opinion in the social sphere mattered. 

And then it hit me:

I've somehow become a sensory influencer! (Listen closely, and you might still be able to hear my squeals of delight all the way from NYC). Only took a decade of hard work. 

But back to Bearaby. They wanted me to weigh in on their Napper (weighted blanket pun not intended, but digging it anyhow) as an adult with SPD and write an honest review. And if you know me, you know I'm always up to the task of checking out something that could enhance my sensory life and yours. I think I emailed them right back saying YES, HOW QUICKLY CAN YOU SEND IT?! I was told to choose a shade (Evening Eggplant - a rich, fall shade of purple) and sit tight. 

A few days later, my daughter's nanny dragged in a massive box behind her. It's HERE! she exclaimed, as excited as I was. I ran to the box and immediately sliced it open. I was expecting to see my new blanket peeking out at me, but instead there was a cream-colored cotton (muslin?) bag with self care tips. I took a million pictures because I always take a million pictures. It was so enticing. And then I unlaced the bag and out peered my new blanket.  

Peek-a-Boo, I Love You

My daughter's Elmo was an immediate fan too.

Peek-a-Boo, Elmo Loves You Too


Finally, I pulled the blanket out of the bag. From the photos, I expected something that felt knit, like the sort of thing someone called Aunt Maude would make you during a long, sickly winter - except weighing as much as a one-year-old. But instead, it felt like thick, cool cottony ropes. I pushed my fingers through the weave and stared at my hand, fascinated by the whole thing. I'd never encountered a weighted . . . well, anything . . . quite like this. I squeezed the strands. They felt like pressing my fingers against a stack of t-shirt fabric. There wasn't a bead in earshot. 

I was totally baffled and had to ask what made it so heavy, and it turns out they hand-knit each blanket, adding layer on top of layer of organic cotton, so it's naturally weighted. I took a nap on the couch later that day, and I dragged my new 20lb friend over me. Instead of hovering at the curve of my hip, like a tent, the blanket eased over every curve and line of my body. I felt the fan's breeze blow gently through the open weave - I even had to put on a sweatshirt! (No sweating - a weighted blanket first.) And yes, I felt a little like a fish caught in a net at the beginning, but then I laced my fingers through the weave and realized the blanket's best feature might, indeed, be this:

It holds my hand.

Anyone who's ever read my blog or my books knows my obsession with hand-holding. Nothing makes me feel safer or more connected to the world around me than holding a trusted person's hand. The weave - weighted magically as it is - somehow squeezed my fingers back. Not only was my whole body receiving proprioceptive input, every single finger was as well. I felt peaceful - and then I fell asleep. 

This continued over the next few weeks. Given any opportunity to nap, I grabbed my Napper. Yes, I could've easily used this blanket for nighttime sleep too. But I'm a weird creature of habit and wanted the soft, fluffy texture of my current weighted blanket to stroke as I slept at night. And so, my Napper has become my go-to naptime blanket. It's also seen me through one particularly ugly meltdown and one meltdown that I circumvented entirely, thanks to this blanket. (Sprawled out on the ground in my famed "Hit the Deck" style under my Napper, I was able to recover quicker than ever before.) 

It's also my favorite weighted blanket to share with the ones I love. Instead of melting under the weight of a blanket plus the furnace of shared body heat, we're never uncomfortable together under the Napper. It makes the perfect snuggle-up-together-and-watch-TV-from-under-it companion. 



So, thanks Bearaby. Thanks for creating what has to be the most visually-beautiful and uniquely-designed weighted blanket on the market. Thanks for naming your creation The Napper, because we all deserve a break to rest sometimes - especially under the delicious weight of this blanket. Mostly, thanks for finally developing a tool that holds my hand. 










Monday, August 17, 2020

Coming to My Senses Turns TEN!

A whole decade ago yesterday, a very unsure and giddy young woman opened her first clean blog page and wrote a post about SPD for absolutely no one but herself to read. She had no idea what she was starting - maybe you'll indulge me when I call it a movement towards self-understanding and a way for others to finally come to their senses too.

That unsure and giddy young woman was me. That blog was this blog. 

Had you told me then that a decade later, I'd have moved beyond a blog into the world of article interviews, speaking engagements, social platforms, and published books on this subject, I'd have said you were absolutely insane. I thought I was completely alone with my differences, but instead you were all out there somewhere on my path and I was somewhere on yours, and we were just waiting to collide. 

And that's how I like to picture life. All of the joys and horrors you're bound to experience - all of your loves and your greatest enemies and that one quirky passion - all of your best days and worst days are out there somewhere, just waiting for you to walk by. 

I'm glad after 27 years of my life, I finally walked by. 

I can't say what the next decade holds, personally or professionally. This year of absurdities and traumas and unexpected joy has shown me that nothing is ever quite as it seems - but I know it's going to be interesting. I believe it's going to be filled with new studies about SPD, new tools to make our lives more comfortable, new opportunities for sensory adults to have a voice, and new ways for me to reach my sensory soul-friends who have also always felt slightly off-center. 

I hope you'll be there too. Without your love and support over the last decade I don't know where I'd be today.

Monday, March 16, 2020

Five Ways to Handle Social Distancing from an Expert Neurodiverse Distancer

Okay, I have something important to admit: I've spent a good part of my life social distancing. Like, long before Coronavirus drove us indoors. Long before it was in style.

And something else: the world's always felt scary to me. Like, long before it was a shared global sentiment. Long before the news was reporting on it constantly.

The truth

Having Sensory Processing Disorder (SPD) means that the world most people take for granted is overwhelming for me, purely due to the way my brain is wired. For people with SPD, the world is often a scary place filled with jumbled, intense sounds, sights, smells, and other sensory input and related feelings that we can't untangle. It's loud when we least expect it. Someone surprises us from behind when we thought we were alone. We can't connect our bodies to the physical space we're in, and we crash about like a gasping fish on the shore. And sometimes, when it becomes too much, our brains temporarily disconnect from processing this distressing input, and we lose our already tenuous connection to our bodies and our environments. It's these sensory shutdowns and meltdowns that often drive us indoors and away from people. We can't be overwhelmed when we're alone. We don't have to account for unpredictability when we control our environment.

In watching my friends, family, neighbors, colleagues, and really my entire social network retreat into their homes for the immediate future, I keep thinking - finally, something I'm skilled at doing! As friendly and outgoing as I am, I'm great at social distancing because being in my own space alone is my most comfortable state of being.

So what advice can I pass along during this time to keep you both safe and sane?


  1. Embrace the situation. This health crisis and its rippling impacts are happening, whether or not you like it. You can't change it, but you might be able to "flatten the curve," as they say, and have a greater impact on our collective health by staying put. You're safer staying put. As much as I like to challenge my sensory differences, there are days where I feel safer staying put too. As much as I wish I could undo how I'm feeling and the ways in which my neurological differences impact my life, I can't. There've been many times where I've had to let my friends and family go out, engage with the world, and live more fully knowing I can't handle the [concert, fair, party - insert all events here, really]. Those moments make me feel especially sad - like I'm missing out purely because of something beyond my control. And it's true, sometimes I am - but I can control how I feel about it, myself, and my life. My reaction won't change the situation but it will change my personal climate. Embrace this time. Even if it sucks and it's scary, hopefully it's temporary. 
  2. Redefine your indoor space. I like to think of my apartment as having zones with different potential activities connected to each zone. When I'm having one of those sensory-triggered social distancing days, I like to shift from room to room and from zone to zone. I think of them each as their own individual space. Divide up your house and rotate around the different stations like they're their own locations. You'll feel less cooped up if you're not just sitting on the couch having an endless Parks and Rec marathon. While you're at it, throw open your blinds and let daylight in - open the window if it's not freezing. Bring the outside to you as much as you can.  
  3. Get creative with your activities. Think about your zones and what you like to do in each one of them. Kitchen: try a new recipe, whip up some homemade hand sanitizer, organize your recipe box (make a recipe box!), pick one ingredient and have your own mini Iron Chef competition, play bartender and day drink. Bathroom: have a spa afternoon (if you do this, enjoy it for me - this is impossible to do with a preschooler), take a long bath with a glass of wine and your favorite book, finally clean the damn tub, sing every song you know and pretend you're grammy-worthy. Living room: watch a series you've been putting off, rent a movie (or a bunch of movies - pick a theme), watch documentaries about new things so you feel like you learned and engaged with the outside world even while inside (this always helps me), read a book/magazine/old journal, do an online exercise class or dance routine, dance party!, sort through old photos (extra points for posting them to social media and entertaining others), play a board game, play solitaire, take a nap. Bedroom: . . . I don't need to tell you what to do in the bedroom *wink*, just don't sleep there because you'll want it to feel fresh at nighttime. If you have outdoor space, you're super lucky - enjoy that fresh air for me. Be sure to vary these activities like you do the zones of your house. And then - and this is the hardest part - repeat. Don't use up all of your activities in one day. Space them out throughout the week. (SIDE NOTE: If you have a kid like me, a similar concept applies, except it's mostly chaos and frantic wall-climbing - lots of zone movement, lots of activities, lots of exhaustion - you can do this and you're not alone, but yes, it's hard entertaining people when you yourself are bored and feel stuck.)
  4. Take to social media but don't let the news break you. Sometimes, the safest way to connect with people as someone with sensory sensitivities is virtually. This applies to neurotypicals now too. Go online, text, FaceTime, Skype, Zoom, just be careful for the onslaught of deeply upsetting news. Won't help your situation at home and might make you feel hopeless. If you do this and feel terrible, see #1 again. Your reaction won't change the situation but it can change your personal climate.
  5. Get the hell outside - safely. For me, this has always been a walk around the block or around the neighboring, familiar blocks. Maybe for you it's a hike deep in nature or sitting on your front steps. Even on my most sensitive days, I make sure I get outside, and even just 10 minutes of sunlight will make you feel better.

Did this help? Maybe not. Maybe it helps to know that a whole bunch of people often social distance because their unique wiring makes it necessary. We've survived. We continue to survive. So will you.

Basically, yes 
Wishing you all health during this uncertain time,

Rachel

Wednesday, November 27, 2019

Sensory Meltdowns and Shutdowns are Not Panic Attacks

How do I know that? Because I'm having a panic attack right now . . .

***

Or, well, I was when I wrote the start of this post a few months ago.

My life had been turned upside-down by the person I trusted the most in this world - the one person who should've put the needs of his family above his own, as I'd always done. As we're all supposed to do. Instead, I'd woken up to the aftermath of a real-life Law and Order SVU episode. Olivia Benson, where were you when I needed you the most?


That morning was also, I imagine, how it might feel to wake up to the day after a devastating natural disaster: a high magnitude earthquake, say, or ancient Pompeii the morning after the eruption of Mount Vesuvius. I'd unknowingly survived the major event - slept right through it, really - and while it felt like the earth had spun straight off its axis, the rest of the world marched calmly forward. My apartment was intact. My daughter was eating her waffle. I sat silently at our dining room table, our nanny watching me closely. The emotional debris of such destruction hit me in waves. The first wave came on with a series of new sensations. It felt like somewhere inside of me, someone was trying to smother me with a pillow. My chest felt heavy and tight. My breathing became quick. My heart ached. I kept trying to catch my breath, but instead I become overcome by heaving tears. I stepped away into the bathroom, panting and sobbing and shaking.

What it wasn't: a sensory meltdown. I've had so many of these episodes in my life.
What these feel like: sudden overwhelm by sensory stimuli - too much noise, too much movement, too much to see - and an inability to escape. Dark clouds, a flood of tears, and in time, a groggy waking up to the world as if I'd never melted down in the first place.

What it wasn't: a sensory shutdown. I've had so many of these episodes in my life too.
What these feel like: a disconnection from the body and environment, triggered by an overwhelming amount of sensory input and an inability to make sense of all of it at once. A feeling that no matter what I do, I'll be lost inside of myself forever. Passes in time in a quiet, safe space. Scarier than it sounds.

What it was: a panic attack.


And not just a panic attack, my first-ever panic attack. In the middle of the tight-chested panting, through the pile of filth my former partner stranded me in, I somehow had the clarity of mind to think: huh. Funny. So this is a panic attack. For decades, professionals thought my sensory meltdowns and shutdowns were panic attacks and that I had Panic Disorder. It was my official diagnosis according to the gods of psychology and the authors of the DSM. I did Cognitive Behavioral Therapy, Exposure Therapy, Biofeedback - everything they could think of to reduce my panic symptoms. Except nothing really reduced these symptoms and no one could tell me why I had these "attacks" mostly in the presence of bright lights and loud sounds - and often at night. It was an ill-fitting diagnosis with symptoms that almost matched the descriptions of my experiences. Almost but not quite.

Friends, we now know I never had panic symptoms. I had undiagnosed Sensory Processing Disorder (SPD). I had my first panic attack at age 36 when my life came crashing down around me. You know, as most of us would.

The weird thing is, as uncomfortable as that panic attack was, it was NOTHING compared to the sensory challenges I've faced in my life. When the first one was over, I was like: okay, that was it? Cool, because a meltdown is way harder and a shutdown is way scarier. And maybe this isn't the case for everyone, but it was for me - even as I had panic attacks over the next few weeks that followed. The worst were the ones right before bed, when the air was still and quiet and I had to sit very much alone with the enormity of what happened to me and my daughter. The more I worked on the traumas I'd endured in September with my therapist, the better the panic attacks got, until they stopped happening altogether.

I think it's important that we work to distinguish what we're experiencing, as sensory people. Because SPD is still largely misunderstood and misdiagnosed by so many, we're quick to lump all sensory happenings into the panic attack bucket. I think it's because we're more familiar as a society with psychological terms and diagnoses and not as comfortable with neurological differences. But meltdowns, shutdowns, and panic attacks are not the same thing. Two are the result of a differently wired brain contending with a demanding sensory world. One is the result of anxiety overloading a system. Two we learn to live with because they're a part of our neurodiverse makeup. One can be helped through psychotherapy. All are difficult. All are part of the human experience as a whole. But they're not the same.

I'm not thankful for what happened here in early September. How could I be? Two weeks after that morning, I was injured in a bizarre accident involving a toddler, a forehead, and a step stool. I carry a scar above my left eye now. When I look in the mirror at that crooked red line, I remember everything: the waking up to a new role, a new me, a new life I didn't ask for or see coming. I carry all sorts of scars with me, externally and internally, as I continue to move into the future. But strangely, I'm thankful to have experienced a panic attack, if only so I could put to bed my original misdiagnosis. A strange token to pull from the mountains of rubble.

Friday, September 13, 2019

On the Loss of a Handler (or Skydiving Without a Parachute)

Let me start by saying I never expected to have to write this post. Not for a very, very long time. And allow me to clarify what I mean by loss: my handler is alive. He is not lost to the world, just lost to me. After making a series of hurtful, selfish, and inexcusable decisions that put me and my child at risk, I have had no choice but to escort my handler out of the life we've shared for a decade.

In short: this week's been a living nightmare filled with actions I never thought I'd have to take and more sadness and anger than I ever anticipated I'd encounter.

Losing a handler is like losing your parachute mid-jump. You pull the handle only to realize that you're falling fast without the gear you've necessarily relied upon guiding you safely down. There's a sense of surreality, finality: a quickly approaching landscape and a new future you never intended to face.


In searching for an image to convey this sentiment, I came across an article about skydiving without a parachute. It asked: can you survive a free fall without one? The answer: surprisingly, yes. The article goes on to ask, what should you do if you find yourself falling without a parachute? The first thing you have to do is stop panicking. It goes on to say, you need to quickly look for the best landing spot and aim at it. I'll admit that their further guidance on body positioning to avoid getting water up your nose isn't as helpful in this scenario.

But their first two points are valid:

1. Stop panicking.
2. Aim at a landing spot.

Apparently, a person dealing with such trauma only has to read articles about extreme sports to learn how best to cope. And maybe it's because life - with or without neurological differences - is an extreme sport (I'm liking this analogy, so bear with me, readers). We are all always a single moment and a single decision away from skydiving without a parachute.

I'm going to try to stop panicking. Panicking won't soften the descent, it'll only impact me as the level-headed parachuter. Through the quickly passing clouds, down on the ground, I'm starting to see a crowd of people. They have blankets, pillows, trampolines, and signs. Their arms are raised in love and cheer. They're my family, my friends, my colleagues, my support network.

I'm aiming at them. It's there I will land.

Wednesday, June 5, 2019

Play-Do? Play-No.

Nearly nine years into my official SPD journey and I'm still uncovering sensory input that I just can't stand. The most recent offender? Our daughter's seemingly most innocuous artsy-play-thing: playdough. It's colorful, transformable, and relatively neat as artsy-play-things go. Who doesn't love playdough? Friends, I don't love playdough. I don't even like playdough. 

This is a weird revelation for this 80s-90s kid who absolutely adored packaged playdough. I have a childhood scent-memory of making wheaty vanilla braids on my grandma's Floridian lanai; taking a short break from snapping open her tiny pair of opera glasses, my favorite of her knickknacks. It's one of those precious memories, tucked away in that warm place where vivid moments of the past thrive. When I think about it, I'm instantly and happily transported back to a very cozy time.

So imagine my joy when our toddler turned two and we could finally break out the colorful wads and start creating. I was a child of playdough. I am not an adult of playdough. Now, I am hyper-aware of my hands - or rather, the residue playdoughs of all kinds leave on them. I can't stand the smell, the gummy feeling, the give as I roll the mass into shapes that delight our daughter. I feel myself become increasingly finicky in my skin; my blood starts to pulse angrily through my veins. I have the urge to run.

The other day, I had what I thought was a brilliant idea: make playdough from scratch! Everything is better from scratch, right? Besides, I've made my fair share of playdough: I dabbled as a preschool teacher for a hot minute in my early 20s. Our daughter ran for her step stool and together we mixed, dyed, and kneaded the dough. She was thrilled. It was gorgeous. I felt like Super Mom in all of her heroic glory, a human Pinterest success story. And then we got down to playing with the dough. I had to suppress an actual gag. It was essentially the same sensory experience as the packaged stuff.

I'm not here to present a solution. I mean, I've considered chucking all of our playdough out the window while shouting expletives, but it wouldn't be productive and I'm pretty sure I'd make our daughter cry. I typically try to wait for my husband to walk in the room so I can direct our daughter to him. When he's not around, I'm a big fan of distraction (shiny thing! Let's go see!) and if all else fails, I cringe my way through playdough. All sensory experiences are temporary, anyhow. I know that. I'm just fascinated that my sensory complexities continue to reveal themselves after so long.

Friday, March 15, 2019

Six Scenes of Sickness in a Sensory Life


One.

I'm lying on a cot in the nurse's office at school staring blankly at the light blue walls, waiting. The table is lined with crinkly paper that sticks to my arms and the pillow is lumpy and unfamiliar. The lights feel brighter than usual. It's one of those waiting-to-get-picked-up visits, one of those I-was-sick-earlier-in-the-week visits. One of those my-senses-haven't-recovered-yet-but-no-one-realizes-it visits. I can't explain my symptoms because, in the traditional sense, I don't have any.

Two.

On the tv: The Muppet Show. It's the only thing I can make sense of through the haze of Flu. I picture myself as Miss Piggy, beautiful, bold, and pink with those envious golden locks, winning the heart of humble, sweet, sincere Kermit. And then a myriad of muppets begin to sing. My body instantly overflows with fear. I can't hear them, see them, and be in my sick body at the same time. The tv goes off, and I'm escorted down the carpeted hallway toward the bedroom, unsure why I can't feel a single foot fall on the floor or my limbs in motion through space.

Three.

I'm barefoot and standing over the shallow end of the pool in early August. A swarm of campers shout and splash from all sides of the bustling rectangle. Through the chain-link fence, the weeping willows are gently tossed by the warm wind, but I'm shivering, even though my insides are burning. My favorite camper hoists herself over the lip of the pool and scuttles past me to retrieve her towel. As she does, pool water is dashed across my skin, and it feels painful, like tiny shards of glass.

Four.

When my college roommate finds me, I'm on the floor near the bathroom sinks, muttering about schooners. It's where I'd fallen when the walls started to tip. As for the schooners, they're all I can see: tall, masted ships tossed in an angry sea. The word crashing like waves - schooner, schooner -until I am the words and the billowing sails. She helps me to my feet and walks me back down the hallway. I don a hoodie and some jeans, and we slowly make our way up the hill and around the bend toward the health center. The nurse is concerned. It surprises neither of us that I am dangerously dehydrated, delirious, and in dire need of rest. My family makes the long drive to retrieve me.

Five.

They call it Mono, but the tests come back negative, and so I eat the occasional Chipwich and sprawl across my bed, unable and unwilling to budge. Weeks of lethargy are punctuated by tiny sojourns outdoors, where I squint at the harsh, ceaseless motion of taxis, buses, and people around me before hastening back indoors to the safety of my apartment.

Six.

Our little one succumbs first and then we follow suit. It's not the Flu, but it sure feels like it - in spite of the shot, in spite of the test results. It's been so many nights of broken sleep: cradling, instead, a tiny body as warm as a roast turkey just pulled from the holiday oven.

I remove my hearty, noise-reducing earmuffs and peel off my weighted lap pad before crossing from bedroom office into the living room. There, she colors with chalk, smiling: her highest fever finally, dramatically diminished. Two days behind her in health, my handler stands watching - a picture of my own future well-being. They are my maps, my guides. My head pounds and my torso aches. He pulls me into a full-body hug, the way my body craves. Below, she points gleefully to her masterpiece and cries: "elephant!"


Monday, September 24, 2018

The Great Weighted Sleep Mask Hunt

Yes, I know - I have become an unreliable blogger! I am so sorry for that. If you've ever had SPD, a toddler, a husband, and a full-time job, then you know that blogging is a luxury reserved for stolen moments of solitude - or if you just must share something new and exciting.

And that's what brings me here today.

Sensory Friends - after seven years . . . I have finally found - and purchased - a new, ever-elusive weighted sleep mask!

Tada
What's that? I think I hear one sort-of bored reader mouthing a half-hearted yay

Sorry if this isn't as exciting as you'd hoped. It's not always exciting over here. Or maybe it's that as a mom, things are rarely for me or about me. But imagine this: discovering a package at the door with your name on it. You forget, just for a brief moment, that you placed an order for something you need and haven't been able to find, and you tear open the yellow packaging with your hands and extract the precious bundle. The reason this particular bundle is especially precious is that, for the past six years, I have been looking for a weighted sleep mask. Any weighted sleep mask. 

You may remember this post from August 2011 when, inspired by a simple action by my clever handler, I bought a weighted sleep mask from a vendor on Etsy and my sleeping life changed forever. I loved it so much that I immediately bought a second one, and soon after, the shop closed - and then morphed. Whatever the case, the sleep mask with the strap disappeared.

I watched my beloved masks deteriorate with quiet worry. I'd googled "weighted sleep mask" multiple times over the past few years to find nothing. I went so far as to accost a lovely husband-wife weighted product maker team at an SPD conference on the west coast to encourage them to develop one for me. The wife said she'd never heard of weighted sleep masks for people with sensory issues.

Apparently, I was the only sensory weirdo who needed to sleep with weight on my face. 

Seven years later, after wearing it for over 2,500 nights, my newest mask was crumbling into bits in my hand. What was once a luxurious poofy pink mask had turned into what amounted to a drowned Muppet on a thinning string. And then last week, just when I thought my search was futile, I stumbled upon this beauty:


The only problem? It's made by Gravity, a company I'd seen crop up on the news in the past year touting weighted blankets as if they invented them. As a person with a neurological difference who's been using a weighted blanket since my diagnosis, I sneered at Gravity. Surely, I thought, you can't believe you came up with this concept - you just captured the collective's attention by marketing your products better. But you know the old adage, sleep mask beggers can't be sleep mask choosers  (or something like that), and I bought one. 

Aside from the satin lining on the side that goes against my eyes (a short-lasting chilly, awkward sensation when I'm used to warm fluffy against my eyelids), the mask is perfect. The strap seems hearty and there's no velcro looming that might cause the strap to pull away from the sides (or scratch a delicate face in a sleepy state). The website says it's about a pound of weight distributed across the face, which - to me, at least - feels ideal. 

Want the best weighted blanket of your life? Go see Keith Zivalich at Magic Weighted Blanket - I own two chenille blankets and one weighted scarf that acts as a multipurpose wonder-weight for every situation. I'd bet many nights' sleep that you'd love their delicious blankets.

But if you want to take your need for deep-pressure touch and proprioceptive-grounding to the next level with a weighted sleep mask, Gravity is the best game in town.


Sweet sensory dreams, friends.