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Thursday, September 4, 2014

Sensory Processing Disorder Adults and Parents Speak Out in Parallel

A few weeks ago, my friends at the SPD Foundation posted the following thought-provoking question to their Twitter and Instagram accounts: "You know you're an SPD parent when _______." As a mental health professional and SPD adult, I loved this open-ended statement. There's no better time to share your experiences than in the purposeful void left by a pause. Although the original exercise was meant for parents, I tweaked the statement in my head so that I, too, could participate. I quietly mused:

You know you're an SPDer when . . .

You grab an egg from the fridge intended for breakfast and drop it on the floor instead (a.k.a. what happened to me last week when I tried to make breakfast. I later dropped a fork too, in case you're wondering. Love when proprioception decides to sleep in late when the body is already up and active).

You find a gash on your arm of indeterminate origin and are surprised that it's even there (just this week I felt a sting on my arm, and was shocked to see a scrape from my shoulder to my elbow. Can't tell you how it happened - I'm pretty sure my injuries appear from thin air).

You're so startled by a car's aggressive honk that you fight the urge to bite something all day and later yell at someone and/or cry for seemingly no reason (this sums up most of my general experiences with noise. Even more impetus not to startle me. CHOMP).

You cater each meal around the right combination of textures and flavors (my greatest daily challenge. It looks like crunch, chew, mush is the winning combination for this SPDer. No lumpy, though. I reserve the right to refuse lumpy food). 

Pleased, I immediately posted a modified version of the original statement to my SPD Adult Support Group on Facebook. It wasn't a completely novel concept for this group of SPDers. Many engaging and enthusiastic members had posted similar comments over time. It was, however, the first time this question was asked to the group at large, and I was interested to see what responses my supremely sensitive cohort would generate. The answers made us all laugh. Each comment had a half-dozen "likes," and follow-up comments were filled with cheers of "me too!" and "YES."

When I described these events to my friends at the SPD Foundation, they proposed a joint-post, hosted on Coming to My Senses, listing the reactions we collected. Tada!

Want to know what it looks like to be an adult with SPD or feels like to be a parent with an SPD kid? Check out our collective responses below.

YOU KNOW YOU'RE AN SPDer WHEN:
(via SPD Adult Support)

"You scowl at the meat you're frying because you don't like the sound."

"You ask your husband to use plastic utensils so the sound doesn't annoy you."

"The smell of food on your skin grosses you out."

"You ask your friend how they taught their kids to know when they are hungry (and get an odd look) because you don't know how to read your own body's signals."

"Your headphones practically equal life."

"You cringe and want to run for the hills when the blender gets turned on."

"A normal night of sleep means a weighted blanket, a weighted sleep mask, earplugs, lavender essential oils, and anti-anxiety meds."

"The sound of fireworks makes you want to jump and hide, even when you know it's coming."

"You hear and react to sounds no one else hears."

"Being in the middle of a crowd freaks you out, and you still shake for hours afterwards."

"You curse the person who made automatic flushing toilets and hand dryers in public bathrooms because you can't cover your ears and dry your hands at the same time."

"When you are feeling stressed by sensory overload, you can't talk to another person because the speech part of your brain feels like it shuts off."

"You put on hearing protection wherever you go - especially into public bathrooms."

"You NEVER leave home without your earplugs."

"A simple outing means planning and packing your entire life - and it's never enough!"

"You wait for the perfect weather or perfect day to go out and do something as 'simple' as food shopping, and then you have to change those plans if something feels 'out of whack.'"

"Your blanket weighs as much as a small child."

"You lose your balance while waiting for the elevator."

"You look drunk when you leave the movie theater because you're so disoriented from sensory overload."

"You carry a big purse to accommodate all of the sensory tools inside."

"You turn down a hug from your child because you just can't take any more sensory input."

"You 'hit the deck' (lay face-up on the floor) to help you feel where your body is in space."

"You almost fall down the stairs right after waking up, before you've had a chance to do anything to help - like put on tinted lenses."

"You have an array of tinted glasses and sunglasses so you're prepared for every occasion."

"You visit the supermarket early in the morning, midweek, when you know most people are at work."


YOU KNOW YOU'RE AN SPD PARENT WHEN:
(via the SPD Foundation)

"You don't hand out a spoon with pudding and yogurt, but instead a straw."

"You always carry around several pairs of sunglasses because your child can't stand the bright sun."

"Practically everything in the house has teeth marks."

"You don't go anywhere without a pair of headphones in your purse."

"You are an expert in explaining to others what 'deep pressure' is."

"The nurses in the ER know your child by name."

"You meltdown in silence because nothing you do can calm your child's meltdown."

"As soon as you buy them new clothes, you go home and get out the scissors - no tags!"

"You are relieved when teeth brushing, hair washing, and nail trimming time is over."

"You feel like you've won the lottery when your child even licks a new food."

"You let your child spin in the middle of a restaurant instead of insisting that they sit down."

"Half of the dishes are broken because he wants 'big noises.'"

"You always have a new activity waiting and noise canceling headphones to make dinner."

"You constantly whisper 'it's OK' throughout the day to calm your child's anxiety from the surrounding noises."

"You breathe on their neck accidentally while giving them a hug at bedtime, and they say 'ow!'"

"Your couch has turned into the Big Balls from Wipeout and your living room is a Wipeout zone."

"You don't attempt colored, soft, or touching food because the meltdown and the fear your child has just isn't worth it."

****

What struck me most about the responses from these two ultimately disparate sub-groups (caretakers and those with the diagnosis) is that there are similarities in the comments - but of course, because we're all ultimately talking about SPD, we might expect parallels between the two. Both groups are comprised of adults - some peering into SPD from their protective parental posts outside, and some gazing outward from within the trenches. However, while the adult group's responses (including my own) express the deepest frustrations of living this life of perpetual adjustment and explanation, the parent group's vocalize the emotional component of secondary failure - as well as success. This is they key word here, it is the thing that gets lost for us SPD adults when we must trek through our viscous neurological muck day-in and day-out. SPD parents have solutions and suggestions, bottomless bags of tools and the enthusiasm to champion their child even during their toughest moments. They take control when the world is turning upside down.

Something has become quite clear to me. SPD adults must work to become their own good parents. 

I am perpetually grabbing straws and popping them into dairy-free smoothies because I know that sucking helps regulate the senses (and banana cinnamon almond milk smoothies happen to taste like liquid banana bread, but that is neither here nor there). My apartment is home to a trampoline, numerous weights, a balance board, putty, and fidgets. I feel like I've won the lottery when I taste something new and am enchanted by the complexities in flavor and texture. I am constantly whispering to myself "it's OK" throughout the day to calm my own anxieties from whatever sensory input is causing me distress.

Sometimes I forget that I do these things relatively successfully. Sometimes it slips my mind that I am morphing into my own good SPD parent too. It's like having one differently wired brain and two psychological approaches to the same situation. 

In adulthood, the ultimate goal is to have absorbed enough wisdom and guidance in childhood from our family unit and society to function as smooth, well-adjusted people. SPD adults of this generation were never really SPD children. We didn't have the therapy, tools, or techniques at our disposal because they were incredibly uncommon. We didn't have the words in our lexicon to justify our seemingly strange experiences of the world. We had to rely on our gut reactions to situations to frame our needs, and then we had to find subtle, acceptable ways to meet these needs. Because of this, in many ways, SPD adults are still growing up - especially when faced with an adulthood diagnosis. We must integrate our decades-old world view with novel information.

I am fortunate to come from a loving, supportive family, and in many ways, their voices have contributed to my own inner monologue: Push the limits. You can do anything. You are stronger than you think. It's taken me some time over the past four years to intertwine their words and my own experiences, now that I have my official diagnosis; now that new terms flood my vocabulary and new acceptable tricks enable me to keep my dysregulation at bay.

SPD adults, let's learn from this experiment and think about the ways in which we can be kinder to ourselves and more willing to take on the challenges that our lives present. Let's develop that hopeful internal voice. Let's work on loving ourselves unconditionally, like a good parent would.

My inner SPD parent tells me that I'm making some pretty significant progress. I wholeheartedly agree.

****
Sometimes, what seems like a simple exercise in collective expression really has a deeper meaning. Again, thanks to the SPD Foundation -- especially Susanne Geiler and Jodi Kinnen -- for enabling these two groups of SPD adults and SPD parents to open up and share their feelings about their sensory worlds, as connected and divided as they may seem. 


6 comments:

  1. As a parent and an adult with sensory processing disorder this really is the truth. I am grateful to have wonderful people who have stood up and spoke for us who are too tried to do so. I am glad we can look at this with a sense of humor, I am glad we can continue to educate adults and children around us.

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    1. Thanks for the wonderful feedback! So happy to hear from someone who understands both sides of this interesting issue.

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  2. It's nice to read something and feel the connection to others, specifically the dropping of items, the random and mysterious bruises and the random loss of balance. I was diagnosed 2 years ago and was told I'm on the low end of the spectrum, as my SPD doesn't overly impact my life (I beg to differ sometimes). When I read posts like these it really does put it all into perspective for me, I don't know need an array of sunglasses, I just need to have them. I don't always need ear plugs but I keep them on hand. I don't need a weighted blanket, I just need to feel the weight of a blanket other than just my sheet. Sometimes I wish I did have it worse so more people would believe that this is a real condition and not just something in my head.

    Now you said something about crunchy and now I want crunchy...good thing my co-workers keep a supply of pretzels on hand at work!

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    1. Thanks Amelia! I'm somewhere in the middle of our SPD "spectrum," for lack of a better term here, but I understand what you're saying - maybe we can do more than others at times. Regardless, SPD is an invisible disability, and it's always tough to show others what it means to have this disorder. You know it's real, I know it's real, and the entire group of adults with this knows it's real. At the end of the day, it doesn't matter what anyone else says about it as long as you can accept that this is just who you are and how you operate. I grabbed some Chex, so you're in good crunchy company!

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  3. Wow! This post is amazing! I understand my own behaviors better now. Many people have always been impressed by my mature character, yet I am scared to death of leaving home, being independent. It's like one-third of me is a normal twenty-one year old (which is my age), yet one-third of me acts like a twenty-nine year old (because I have had to deal with a lot of junk in connection with SPD), but also there is that one-third that still feels and acts like an eleven year old (because SPD has stunted that part of me a little). What you said about having to be your own parents and yet lack things that a normal child would have experienced really hit home!! I hope what I'm saying makes sense. Anyway, thank you, thank you for writing this!!! Definitely sharing and pinning this! :-)

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    1. Thanks Annetta! I am always so grateful for your insight and perspective. I think so many adults - SPD and neurotypical - forget to be that "good parent" to themselves. Seeing the slight change in tone from our answers to the SPD parent answers, it really screamed out at me: we must continue to root for ourselves and believe in what we can do - just like SPD parents. Please share and pin away! Must continue to engage people in our experiences.

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