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
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.

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:


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.

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.


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.