autistic spectrum disorder

Sparkling Water, a Nighttime Enemy

Folks, it’s been a while. I fell off the bandwagon and into the void. This beautiful blog sat lonely and afraid in the dark, like a little ghost after their haunted house was demolished and replaced with a new modern townhouse.

I didn’t know how to break the ice and enter the stage, the blog stage…the blage. So, I’ve decided to WING IT and share a tale of no importance whatsoever. Hold onto your ciders, quirksters.

It started one ordinary night. I had just finished slaving away on 400 dishes left in the sink. My hands were a pruny, sad sight. I don’t entirely understand why this happens, but I hate it, I thought, as I gazed down up the wrinkled blobs that were my palms and fingers. It was summertime, and I was in need of a cool drink before bed. In the fridge my eyes wandered to a small bottle of lemon flavored carbonated water.

After pouring myself a tall glass of fizzy, I trudged to my bedroom and began to get ready to call it a night. After snuggling in and reading some kind of depressing fiction, the lights went out and I prepared to enter the dreaming hours.

Except I wasn’t falling asleep.

It was getting late, and I remained awake. Awake is my least favorite kind of state. Sleep is the time for my neurodivergent mind and body to figure out all kinds of stuff, like why I can’t go up or down stairs, or why the feeling of the seams in socks make me turn into a neurotic mess, or ~~what I’m gonna do when the planet dies and I have to pick another one to live on but they are all terrible~~.

During the pre-sleep time, I became increasingly agitated. I tossed. I turned. I did the electric slide under the covers. I turned on the fan. I opened the window. I took a sip of fizz. I flipped over the pillow. I recited all the presidents of the U.S. in order starting with George Washington in 1789. (Yes, I can really do this. It’s my one talent.)

Yet, I couldn’t sleep.

Enter our antagonist.

Suddenly, the gears in my brain were able to produce a lead in this investigation of why I couldn’t fall asleep.

TINK. TINK. TINK TINK. TINK

No, it wasn’t Tinker Bell, good guess though.

It was a quiet – so quiet – gentle tinkling sound. Imagine if Tinker Bell had long nails and was gently clinking them on the side of a glass cup, like one of those ASMR YouTubers.

This is the scenario. Except my unfortunate soul, who can hear LITERALLY EVERYTHING, could not tune this out. I could not sleep until I put a stop to this madness. Cue me turning into an absolute werewolf and tearing apart my entire bedroom trying to find the source of the TINK.

I turned out my desk; crawled around on the floor like a creepy girl in a Japanese horror movie; I repeatedly smacked my electronics; I unplugged and replugged all the things.

With no success, I left my room, went downstairs and out the door (like a maniac). If I couldn’t find the source of the sound inside my house, surely, it was coming from outside. Logic?…..

I stood outside my house, in the darkness. The critters of the night were singing loudly in the dense woods.

SUDDENLY –

After verbally assaulting all of nature, I retreated to my room, dejected. I could still hear the TINK CLINK TINK CLINK CLINK. I tried a new approach. One that I knew would fail, but had to go for anyway.

It was no use. Brain wasn’t grasping the concept of “just ignore the sound.” As I thought about moving to the couch for the night, I reached over to grab a sip of fizzy.

WAIT. THE FIZZY.

I peered maniacally over the top of the cup. Little baby bubbles were drifting slowly to the surface. When they would reach the top, they would go: tink tink clink tink tink. It was a sound so quiet that only a person with supersonic hearing and an undeniable predisposition for chronic stress could pick up on. These baby bubbles – how they mocked me.

Horrified, I downed the entire glass of sparkling water was quickly as possible.

With my room trashed, the woodland critters emotionally scarred, and my tummy full of demonic baby bubbles, I closed my eyes and collapsed into the dark silence.

As I drifted into the quiet bliss, snuggled under the cozy blankets, I could feel the Sandman coming closer. At last, sleep. Until-

xo kelly

My brain can’t tune things out: a story about habituation

Habituation.

It’s a super-duper important neurological process that most people take for granted. In fact, I bet you didn’t even know you did a thing called habituation.

8DE8E4F9-51F2-455A-8AC9-8154B11A4A65

5D8805A3-4BC4-4E84-9F08-9D2D93E22CBB

If you google the definition of habituation, you most likely wonder who’s responsible for such a thing. Here’s google’s definition:

the diminishing of a physiological or emotional response to a frequently repeated stimulus.

5F1BB8B8-9603-4DBB-A1EF-C736D7AA45F1

Ok, ok, we aren’t that brainless. We know what the definition is saying, but, we need to know what it means and how it applies to our beautiful selves.

So, what the heck is habituation?

Picture this: you are in the kitchen preparing a delicious lunch. Outside, someone is mowing their lawn, and cars are rumbling down the street. A bird is squawking; your child is playing in the next room; the television is on. You’re wearing fuzzy slippers and there is a bright light above you. You, however, are able to concentrate on your recipe.

You probably didn’t notice, but you can no longer hear the lawn mower, or your child playing, or the cars, or the birds. You don’t feel the fuzzy slippers on your feet and you aren’t aware of the light shining on you.

Actually, you do hear, feel, and see them, but you are able to block them out and focus on the task at hand. But if you pause and tune in, all that stuff is still there. Must be magic, you think.

Alas, yer not a wizard, Harry. It’s not magic; it’s habituation.

Here’s my less fancy definition of habituation: the brain’s ability to block out stuff by becoming used to it being there.

Your brain can stop paying attention to things that aren’t important in the moment. Hearing the birds outside or the hum of passing cars is not important, so the brain filters them out of your conscious awareness. Notice the word “habit” neatly tucked into “habituate.” Your brain makes a habit of recognizing and tuning out certain stimuli.

What happens when your brain doesn’t habituate well?

Perhaps the most notable side effect is anxiety. When your brain doesn’t have the ability to adjust to a steady stream of information, it reacts by constantly sending up red flags. If it doesn’t know which information is new and which information is not new, it cannot tune out anything because *everything* is new and important and needs to be addressed NOW.

More importantly, it’s something that many people with Sensory Processing Disorder – as well as other neurologically-based conditions like Autism and Schizophrenia – struggle to do.

That’s right friends, I can’t habituate. Or at least, I really stink at it.

Why does your brain stink at habituating?

Truth is, we aren’t quite sure why people with certain neurological conditions can’t habituate. Researchers know that habituation involves the amygdala, the nervous system, the prefrontal cortex, the limbic system, and the vagus nerve. And we know that those systems don’t always function like they’re supposed to in individuals with neurological disorders. Studies have been done with children with autism to test their habituation abilities, and unsurprisingly, brain scans show that they are unable to “get used to” any stimuli no matter how many times they are exposed to it.

People like me (with SPD) struggle to habituate because the basic stimuli we receive every second of the day has a challenging time getting through our processing system. We end up in a state of hyper-arousal and cannot tune out stimuli.

If you have SPD, you will probably not stop noticing that tag in your shirt. You cannot ignore it. Forcing yourself to wear it and get used to it is ultimately useless. (I know this because I’ve read several studies about people with conditions that compromise the ability to habituate, and exposure therapy has little benefit.)

When I wear jewelry, I do not stop feeling it on me. When I wear a ring, it’s as if my brain is only hearing this:

When I’m around a barking dog, I will jump and respond with panic every time the dog barks. My brain will not get used to the barking. If the dog barks 32 times, I will startle and panic 32 times, over and over, until I start to cry. Yes, it is embarrassing, thank you. No amount of me standing there forcing myself to listen to it will reduce my brain’s reaction to the sound. Yes, I have field-tested this theory only to yield the same crappy results every time. Look, I made a graph:

habituate

It’s unbearable to be aware of everything around you (or on you) all the time. This is why people with sensory issues are quickly exhausted or reduced to tears after a short time in an overwhelming environment. It’s like our brain is fried from constant processing.

How do I improve my brain’s crappy habituation skills?

Considering that exposure therapy has been shown to have little effect on treating poor habituation skills, there’s gotta be another way (cue that song “we know the way” from Moana). Up until right now writing this blog post, I had no idea what that was. I dove – well, jumped carefully, I don’t like diving – into the internet to find out how to fix this habituation situation.

(Now I’m losing it because I just realized habituation situation is so neat-o and I should’ve used it sooner.)

Some time later…

My research has concluded that there is no straight-forward way to help a brain that doesn’t habituate well. Actually, right now, the best course of action is a sort-of backdoor approach. For the sensory-stressed, the best course of action is to reduce sensory reactivity in other areas of life and practice stress reduction techniques.

Confession: I am now cringing as I type this because this was not the answer I was looking for. It’s basically saying, “MAYBE IF YOU CALM DOWN A BIT, YOUR BRAIN WILL FOLLOW ALONG, YES?? We have no idea. That’s our best guess because the brain is a big ‘ol mystery.” No! That’s not what I want to hear. I was hoping for something like, “consume more lemons” or “strengthen the muscles of the lower back.” Although I don’t know why either of those would have anything to do with treating a poor ability to habituate, but at this point, I’m sure most of us are willing to try ANY approach that doesn’t involve the words, “just relax.”

It seems to be a trend that researchers are consistently vexed by the neurodiverse, and will probably be for the rest of history (must we always be so lucky??). They tend you use “just relax” as a blanket solution to fix the problems of autism, epilepsy, PTSD, and more. I really wish they would get a new blanket.

While being terrible at habituating information isn’t going to kill us, it certainly isn’t going to do us any favors either.

And there you have it; that’s ~~habituation~~ the habituation situation. I have no delightful or uplifting way in which to end this. Let me briefly list some good things on my mind:

-Thanksgiving’s fast approaching

-It’s almost bedtime

-I’m going to make tea after this

–

Alright, that’s about it. Depression is a wondrous thing, folks.

xo kelly

SPD Diagnosis in Adulthood

Here is a fun fact according to many medical professionals: children with sensory processing disorder grow out of their sensory issues, and become well-adapted teens and adults.

In a previous post I coined the phrase: people grow out of sweaters, not neurological conditions.
I know this is true because nearly every week I read about a new person realizing that they have had sensory issues since childhood and these same problems continue to plague them in adulthood. However, these adults struggle to find a doctor willing to help them.

So this leads me to my next conundrum. Due to the belief that SPD is a disorder of childhood – WHICH WE GENIUSES OF THE INTERNET KNOW TO BE NOT TRUE – another belief now exists that there are no adults suffering with SPD. I use the term suffering because I’m almost certain nobody that has this condition actually enjoys it.

love having spd

Because of this idea that adults don’t have SPD, and doctors don’t always recognize it, we cannot get treatment or help OR ANYTHING because apparently we are not legit.

Story time:

Start from the Beginning

When I was thirteen years old, I went to a occupational therapist to talk about my worsening sensory issues. I was previously diagnosed with SPD at age 6, and 10 by an OT. Here’s a little summary of what happened:

it looks like

I know

grow out of it

info

goodbye forever

thank you for nothing

The end.

The OT handed me a piece of paper containing information about how to create a good sensory diet, AKA things I already knew. My experience mirrors that of countless others, who, as adults, were unable to receive actual therapy beyond a consultation from an OT solely due to their age. Even worse, most adults who believe they have SPD cannot find an OT who will see them just once for a consultation.

I don’t know of any other condition where this happens. Age should not be a factor in being able to receive treatment for a possible neurological disorder. And so I thought to myself, “Self, it’s time to investigate.”

Find me an OT!

I took it upon myself to pretend to find an OT in my area that would work with SPD adults. Trusty ‘ol Google helped me out with this. I am not lying when I say that every single place that offered occupational therapy services in my area were clearly places for children:

Pediatric This; Pediatric That; Fun in the Sun OT; Big Leaps OT; Little Hearts OT. You get the picture.

Strangely, back in the early 90’s when my Momsy was desperate to get me some help, she had a very hard time finding an OT that would work with children! I kid you not. OT was an adult thing. My my, how the times have changed!

Like with other neurological conditions, people like to pretend that once children grow up, the problems don’t exist anymore. It’s like the Magical Neuro Fairy waves his wand and the problems are gone! AMAZING!

poof

What now?

How do you get a diagnosis or even better – TREATMENT – for Sensory Processing Disorder as an adult?

I don’t know.

The world of Occupational Therapy and SPD seem to revolve around children and children alone. I don’t know why this is, when there are clearly so many adults with sensory issues.

However, I’ve created a list of ways that will give you the best chance of getting a diagnosis:

Contact any and all OT’s in your area and ask if they’re willing to meet with you (yes, call the OT center for children. You have nothing to lose). Even if they aren’t willing to do actual therapy with you, at least they can screen you and tell you whether or not your issues are sensory related.
If option 1 doesn’t work, speak with your regular doctor and ask for a referral to see a specialist, such as an neurologist or psychologist/psychiatrist. There is a small chance that they can help you with your sensory issues. This is a neurological condition after all.

Crap. That list was shorter than I expected.

What to do if Kelly’s list didn’t work because it was too short:

Luckily, Sensory Processing Disorder is one of those problems that you can successfully manage on your own, without the help of an OT or medical professional. There is an abundance of information online – as well as in print – to guide SPD’ers of any age.

Here is my new list of what to do if you believe you have SPD but are unable to get a diagnosis/treatment because of your age (or any other reason):

Go to a library, bookstore, or Amazon.com and get the following books:
Create your own Sensory Diet. What is a Sensory Diet? A Sensory Diet is a treatment plan that will help you throughout your day to manage your sensory issues. The “diet” usually consists of various sensory-related activities that help regulate and calm your specific sensory woes. For example, using a Wilbarger Brush 3 times a day, or using Chew Toys can be part of a sensory diet. Each person is different, and so each Sensory Diet will be different too.
Join support groups for adults with Sensory Processing Disorder. I am currently an administrator for the Facebook group, Sensory Processing Disorder Adult Support. The page provides great emotional support and answers for SPD adults, both diagnosed and undiagnosed. There may also be support groups that meet in-person within your community.
Find a mental health counselor or therapist to guide you through the other crapsauce that comes along with dealing with sensory issues. It’s not all about OT, you know. We are people, and people have feelings.

For the record, it’s very much OK to not have an SPD diagnosis. This is not a life-or-death condition, even though it can be a this-is-ruining-my-life condition. A diagnosis will not change how you approach your own life, and how you go about being proactive about your sensory issues. (An exception to this would be if you need a diagnosis for work or school modifications. In that case, a doctor or even a therapist may be able to sort out your educational/vocational issues without having to give you an “official” SPD diagnosis.)

I hope this was helpful to you, and if it wasn’t…then I’m not sorry because I did take a lot of time to look into this (hahaha). However, I am sorry that the world isn’t up-to-speed with how to best help adults with sensory issues. It really sucks. Until that time, be your own advocate, and have some cake/cupcakes my friends.

cupcake

xo kelly

The Day I Learned I Couldn’t Dance

In other words, can my neurological condition take the blame for my lack of groove?

In a pathetic moment of hormonal-induced rage, my depressed, potato brain had created two options for itself:

1. run around and destroy local property and regret it later while in jail

2. find a sweet-ass dance video on youtube and dance my awful feelings into oblivion

Luckily for everyone, I selected option 2.

After throwing on some terrible pink shorts and a ugly maroon tank top, I was ready.

Youtube provided a wide array of follow-along workout videos. I decided to watch the one with the most attractive, happy, and successful looking people. If I danced with them, I could become them. That’s how it’s supposed to work, right? They were led by her:

Her name is Bipasha Basu; she’s a popular Indian actress with hair that flows and skin that glows.

At first, it was encouraging. All these attractive people dancing and exercising together to make themselves even more attractive. I too, was dancing with them. Bipahsa was talking to me; her incredible abs motivated me; her bronzed cleavage cheered me on.

It would be nice if my dance story ended here:

I danced into the sunset with Bipasha and the crew, as my mental health struggles melted away. Everyone was right – exercise does help!

Unfortunately, the story goes more like this:

Within approximately 7 minutes, I realized that I was not only struggling to dance along with Bipasha, but I was completely unable to dance at all.

As Bipasha and the rest of her gorgeous friends boogied effortlessly, I was unable to follow even the most basic dance instructions.

Literally, no exaggeration here:

To add to the incredibly low level of self worth I was experiencing, the dance moves became increasingly more difficult and soul-crushing – this one was referred to as the “sexy sway.” I’m not joking, look at the screen shot I took:

I can assure you there was no swaying and there was definitely no sexiness on my end. If I had dance moves, they would probably be:

My dog Sam sat silently nearby, judging me. (Also, what a hypocrite! As if Sam can dance better than me! What’s his best dance move you ask? Probably the “Fantastic Fart.”)

To add to the insanity, I danced in the privacy of my own bedroom, which is barely large enough to accommodate regular life activities, let alone dancing and dog lounging. Sam didn’t want to lay on my bed or in any surrounding area. No, he chose to sit right in the middle of my personal dance arena.

What can only be described as some freaky, alien-esque aerobics, the experience left both me and the dog in a state of hyper confusion.

Sam, not being the type to filter his facial expressions, or shower me with unconditional love as other dogs do, was clear about his opinion of me at the time.

My only saving grace was in the few moments during the workout where Bipasha and the gang would march in place. I’ll have you all know that marching in place happens to be one of my special talents.

As I marched in place (into the sunset), I became comfortable with the fact that I cannot dance along to any sort of choreography at this time. (It also occurred to me that I should probably see a neurologist because WTF something is WRONG.)

Maybe one day, when my brain decides to get with the program, I will join in the ranks of Bipasha’s aerobic dance team/squad/army. Until then, I will march on….in place, obviously.

xo kelly

Public Restrooms: A Guide for the Sensory Sensitive

Picture this: you are out and about in this great, big world – away from the comfort and security of your own bathroom. Suddenly, it hits you.

You gotta go.

Perhaps it was those ~~two~~ three cups of tea you had this morning. Maybe you ate a sandwich and afterwards, you remembered sandwiches give you tummy troubles. How unfortunate! Whatever the case may be, you know now that your destination is only one place: the public restroom.

Depending on where exactly you are, your public restroom experience will be either “pretty bad,” “extremely bad” or,”oh lord have mercy on me.”

If you’re like me, most public restroom experiences fall into the “oh lord have mercy on me” category. This is because not only do public restrooms suck all faith in humanity from my soul, but they are also SENSORY-DANGEROUS SPACES. What constitutes a SENSORY-DANGEROUS SPACE, you ask?

Luckily for you, I’ve spent my whole life figuring out the best way to deal with public restrooms as someone with Sensory Processing Disorder. I will now bestow upon you, dear friends, the skills and swift tricks I have mastered to survive these dreaded moments.

1. Know your options

Before heading to your death in a public restroom, stop and think. Do I know of a nearby restroom which offers a BETTER sensory experience? Can I make it there in time? If yes, go there. Always know your options before making a commitment.

Within my first week of college, I made myself into a restroom expert of sorts. In my mind I created a mental map of the entire campus and all its restrooms. Each one had a rating scale of how sensory-dangerous it was. I carefully calculated the time it would take me to run from one class, across campus to use the least sensory-dangerous restroom, and back to my next class without being late. (It’s actually really sad that I had to run through this anxiety-producing drill every day at school, but beggars can’t be choosers….or something like that.)

2. Use your tools

If you’re like me, you keep an arsenal of sensory tools with you at all times. For my particular sensory needs, this includes: ear plugs, bigger ear plugs, noise-cancelling headphones, sunglasses, and a Wilbarger brush.

Much like preparing for battle, one must gear up before heading to a public restroom. There is no shame in this!

3. Go during safe times

If it can be avoided, use the public restroom at times when you will likely be the only one in there. Just one other person can reak havoc upon your restroom experience. Tread carefully!

If it is impossible for you to use the restroom during slower times, then option three is a total waste of time. I’m sorry I even created this option.

4. All about technique

So you find yourself in the restroom with multiple people doing multiple things. I’m talking about hand dryers, hand washing, toilets flushing, doors slamming, kids screaming, people talking loudly on their phones (which by the way, has me all “WTF talk somewhere else”), and many more!

Your tools can only go so far. It’s not about the tools you have, rather, it’s how you use them. It’s time to explore the Techniques for Public Restroom Sensory Safety and Survival, or as I call it: TPRSSS, (pronounced “te-purrs”).

Technique 1: Wash ‘n Go

After you’ve done the business, it’s time to rid yourself of those pesky germs. But wait! Oh no! The restroom is crowded with people using those hand dryers that sound like commercial airliners taking off. For this technique, wash your hands and RUN. Dry on your own time – those hand dryers will wait for no one.

Technique 2: Be aware of your neighbors.

Are your fellow restroomers about to flush and unleash a windstorm of sudden, loud toilet sounds? Be prepared and mindful of your neighbors. Don’t let an unexpected flush or door slam set you off into panic mode.

Technique 3: The Cold Shoulder

In a moment of haste, you may have forgotten to wear hearing protection before entering the restroom. Fear not! In this situation, cover your ears and use your shoulder to take the place of one hand when that hand is in use. Observe the following diagram:

Technique 4: Run, Forest, Run

Move quickly. You are a cheetah in the fast-lane. Slow and steady will not win the race for you when you’ve got sensory issues in the restroom.

Technique 5: Mental Stamina

Here’s the situation: you gotta go, but the restroom is crowded and way too overstimulating for you right now. But you’ve been here before. It’s time for you to use your mental powers to convince yourself that you really don’t have to go at all. Need to pee? Not anymore. Why? YOUR MIND TOLD YOU SO. This technique requires time and patience, but once mastered, it may be your saving grace in a desperate situation.

In conclusion, restrooms are a sensory nightmare. But, with the right techniques, you CAN survive the experience.

As I lay awake at night, pondering the insanity that is life, I imagine a world where people with Sensory Processing Disorder can use public restrooms with ease. I dream of quieter toilets, and paper towels for hand drying, maybe even less fluorescent lighting! Let us end the reign of restroom misery!

One day I will enter a public restroom less like this:

And more like THIS:

xo kelly

Got any other sensory-related restroom advice? Let me know in the comments!

The Real Restroom Dilemma

Last summer, Momsy and I attended an Arts and Crafts Fair. After bopping around from one crafter to the next, we needed a bathroom pit stop. Luckily for us, there were actual bathrooms at this fair – not a porta potty in sight. Unfortunately for me, those bathrooms were very noisy, and included my least favorite thing ever: air-powered hand dryers.

At the bathroom building, I informed Momsy that I did not, in fact, have to pee.

I lied.

Was my bladder going to explode if the internal pressure was not released at that very moment? Probs not. But there was no way I was going into the noisy restroom.

I waited patiently outside for Momsy, watching women join the long line for the restrooms, then watching them exit after several minutes. The roar of the hand dryers, women talking, and the toilets flushing collided with the quieter sounds of the world outside as I stood baking in the bright sun, like a cookie.

Walking past me came a woman pushing another woman in a wheelchair. The woman in the wheelchair was missing her one leg below her knee. The pair were heading towards the restroom line.

Suddenly, a young volunteer working at the fair asked the woman, “are you headed to the bathrooms?”

The woman in the wheelchair replied, “yes.”

The volunteer said, “oh, come this way, this the employee bathroom, but you can use it.”

The two women thanked her casually and followed her past a security gate and into another small building.

That moment resonated with me. The woman in the wheelchair was clearly disabled – anyone could see both the wheelchair and the fact that half her leg was not there. The volunteer did the right thing by trying to make life easier for her by accommodating her needs and allowing her to use a separate, less crowded bathroom.

I began to imagine if I had asked that same volunteer if I could also use the private bathroom. I envisioned myself explaining – in my awkward-while-trying-to-be-confident manner – about my sensory processing disorder, and how the normal bathrooms were very uncomfortable – in this case, impossible – for me to use.

I could see her making that “ehhh” face, the one where she isn’t buying it, but she doesn’t want to look like an absolute idiot either. She responds with something along the lines of “well, you see, that bathroom is for employees only. I’m sorry but I don’t really work here. I’m just a volunteer, and I don’t think it would be allowed.”

If I was a true badass of disability equality and advocacy, I might say something along the lines of, “But I noticed you allowed that other disabled woman to use that restroom. I was hoping I could also be accommodated because of my special needs.”

Next, perhaps, she would create some kind of excuse for her decision, like “I allowed that woman to use the other restroom because her wheelchair would be too big for the regular restroom.”

Or “I didn’t want her to have to wait on the long line.”

Or maybe even, “She is in a wheelchair so she has a disability. You are clearly a fully-functioning person because I cannot see any visible sign of a problem. So you cannot use the other bathroom because you are a liar and you are trying to mooch the system. SHAME….SHAAAAAAMMEE.”

Was there a small chance that this volunteer would allow me to use the private restroom after I politely explained my situation? Of course. But that small chance was probably very, very small. And for some reason, I would end up feeling guilty asking for this accommodation in the first place.

The whole moment made me think about every person with an invisible illness or disability or condition. Our lives are spent trying to make the best of a world that doesn’t seem too eager to accommodate our particular needs. Whether those needs are closer parking spaces, equal treatment in school or at work, or the need to use a different restroom when one is available.

As a teenager, I used to wear brightly colored earplugs to visually remind those around me about my condition (aside from using them for hearing protection, too). Without them, I’m certain most people would have completely forgotten about my severe sensitivity to sound and things would have been more miserable then they already were. I used to jokingly tell Momsy that I wished I was in a wheelchair because maybe then people would respect and understand my needs once they saw a visual sign of a problem. How sad is that?

Would it be tacky of me to walk around with a massive sign drapped over my shoulders, reading: PERSON WITH NEUROLOGICAL CONDITION. MAY REQUIRE SPECIAL SERVICES?

I wish I didn’t have to feel that way, but that’s how much of our society thinks of differently-abled people, and that’s how desperate I am to make things easier.

As we left the arts and crafts fair that day, Momsy and I talked about it. I said, “What if a mother and her young, autistic son asked to use separate bathroom and were turned down, even after the mother explained her situation?” Momsy replied, “They would’ve had to use the regular restroom and the boy would’ve been very upset in there, and the mother would be frustrated and tired.”

I mumbled something like, “that’s not fair. Life sucks. Can we get ice cream?”

And so we got ice cream, and I peed when we got home (in case you were concerned).

NEWSFLASH: Adults have SPD too

This post contains information that NEEDS to be said. Warning: the following may cause epiphany, sudden awakening of the soul, and Oprah’s “ah-ha” moment. Proceed with caution.

Approximately 93% – I just calculated that statistic in my mind – of all information on sensory issues, both in print and online, are geared towards children.

For a while, that knowledge left me feeling like this:

One of the main reasons I started this blog was due to the near absence of information and resources for adults with SPD on the web or in books. The only exception to this would be a few blogs, and Sharon Heller’s Too Loud, Too Bright, Too Fast, Too Tight, which has become the bible for sensory-plagued adults. Unfortunately, SPD adults often find ourselves reading sensory books geared towards children, and attempting to relate the information to our adult lives. It can be awkward.

Like many neurological disorders, sensory processing disorder does not go away with time.

A fun fact is that according to many medical “professionals,” children with sensory processing disorder just learn to live with their problems, or they simply grow out of the disorder.

At age 13, many people – including myself – were turned away from occupational therapists for the sole reason that we were too old to be treated for our sensory issues.

I remember asking my mom, with confusion, “What’s the difference if I’m 12 or 13? I still have the same disorder. I still need help for this.” Momsy didn’t know what to say, and she couldn’t have known.

Here is what I know: growing out of something is for clothing. People grow out of sweaters. People do not usually grow out of neurological conditions. They manage it and – in the case of SPD – learn ways to live within their specific limitations. SPD can regulated with various therapies (occupational, physical, or psychological), but there is no cure for it just yet. However, this leaves us SPD adults with many problems.

It leaves us feeling a strange sense of being “unwelcome.” Adults are not the target group, if you will, for awareness and research. SPD adults are very much ignored and neglected by the medical community. We often feel a sense of guilt for even asking for/seeking out help from professionals. We are given this look when we mention SPD to our doctors:

This is not Hogwarts, my friends. SPD cannot be sent away with the flick of a wand, nor does it magically vanish when we turn 18. It is not fair or right that adults with neurological conditions such as sensory processing disorder are left in the dark simply because they are adults.

As an adult with SPD, I can assure you that my sensory problems are here to stay (for now). I’ve overcome many of my sensory struggles from my childhood – yes. However, newer and more overwhelming challenges have reared their ugly faces into my life as an adult with this condition.

Due to the belief that SPD is a disorder of childhood – WHICH WE GENIUSES KNOW TO BE FALSE – another belief now exists that there are no adults with SPD at all. Because of this idea that adults don’t have SPD, it is not recognized by our society, and therefore, we cannot get help or respect.

SO WHERE ARE ALL THE ADULTS WITH SPD?

I’ll tell you where they are. They are struggling to find their place in a world that doesn’t work with their sensory system. Without acknowledgement from our community regarding this conundrum, we find ourselves turned off by the world.

Moral of the story is this:

Adults with SPD are out there. We are here! (Well, not really. We are actually trying to avoid the entire world while simultaneously being part of the entire world. It’s a tad complicated.)
Spread awareness and educate your fellow human beans that, in fact, adults with neurological condition DO exist. We need your compassion and respect in order to overcome our challenges.

xo kelly

The Big Band-Aid Calamity

A few months ago, I was cutting some mat board to put with a framed drawing. Tragically, I lost my grip on the mat knife and accidentally sliced my left index finger. I grabbed my finger tightly and ran to the bathroom where, luckily for me, Momsy was there to assist me with my new wound.

The minute I released my hand on my finger, blood began to pour. It was like a horror movie, (if that horror movie was about Momsy and I standing in the bathroom, and I was just saying “ow, ow, ow”). TERRIFYING.

We wrapped it up quickly as a dull throb slowly began to overtake my whole hand. I’m lucky to be alive, honestly.

After a while, we re-wrapped the large cut with proper bandages and gauze. It wasn’t until this moment that I realized the doom which I now faced.

The new bandage monstrosity on my tiny finger was a huge sensory turnoff. I mean, HUGE.

I couldn’t for the life of me stop sensing the bandages on my finger. It wasn’t the pain, which was slightly annoying, rather, the heap of gauze, tape, and other junk piled onto my finger tip was like an assault on my entire sensory system. I’m not kidding you when I say that the illustration below displays the actual bandage to finger ratio:

Two days passed and still, the bandage predicament consumed my thoughts and will to live. My family informed me that I have been walking around the entire time with my finger stuck out awkwardly. Humiliated and moody, I told them that I had no idea that I was doing that, and further, I couldn’t seem to control it. I’d try to push it down into normal finger position, but it would pop right back up like a jack-in-the-box.

A week passed, and still my ugly finger wound was relentless in its quest to destroy me via sensory tactile WARFARE.

As a child, I had similar reactions to things like denim, tags in clothing, or socks that became awkwardly bunched in my shoe. I referred to the sock problem as a “coo-eee.” All were the cause of extreme distress. Parents with sensory kids, I know you feel me right now.

As an adult, I’ve managed to conquer the denim thing, but the same cannot be said for the clothing tags and sock cooees. Sensory adults, I know you feel me right now.

The giant band-aid was merely the tip of the iceberg, so to speak. If I was having a bad sensory day, my band-aid finger was sure to put me over the edge.

Thankfully, because the world is merciful, I was upgraded to a single band-aid after two weeks. I saw the light at the end of the tunnel. Perhaps there was hope after all!

One morning, that glorious day had arrived where I needed no band-aid whatsoever. My finger was free! And so was I.

All that remains now is a scar on my finger tip – the memory of a harrowing three-week period of sensory insanity. I will never again underestimate the mental anguish that a bandage can cause. More importantly, my finger returned to its resting position, and life went on. My tiny scar and I became very close.

xo kelly

Sensory Sea Turtle

Attention sensory human beans of the earth, and beyond:

I have discovered the internet meme, Sensory Sea Turtle via the appropriately named tumblr blog, fyeahsensoryseaturtle.tumblr.com

The joy and delight I feel over this discovery is past the realm of comprehension.

The internet community, in all its glory, created a meme specifically for Sensory Processing Disorder. What an honor, really.

Sensory Sea Turtle is a way for SPD’ers everywhere to share and acknowledge the insane amount of issues that results from SPD. Sensory Sea Turtle is sometimes crude, sometimes gentle, and absolute perfection in every way.

The following 14 Sensory Sea Turtle memes are from the blog above, fyeahsensoryseaturtle, aka, they are not mine and I did not create them. (WARNING: some of the memes contain bad language)

1. occupational hazard

2. hopeless romantic

3. ain’t playin’ no games! (also, please ignore the misspelled word in this one. Have mercy on its creator, somewhere out there, someone doesn’t know the lose/loose difference).

4. a hot dog prison, essentially

5. gotta keep it real

6. went to a movie!? WHAT ARE YOU, SPD SUPERMAN? sheesh

7. only thing worse than an emergency is the alert system: BUUUS RUUUU ZOOO RAPPP weeeeeeeeee

8. while in a room full of successful, fully-functioning, neurotypical human beans…

9. time to get new frenz I suppose

10. story of my entire college experience….

11. rock on

12. demonic attire

13. in the midst of a nightmare

14. slight miscommunication

See? Sensory Sea Turtle is just like you and me. (Except he’s a turtle, and he’s also a product of the internet, and he doesn’t exist in real life.)

Sensory friends, let us make Sensory Sea Turtle our international mascot. He is the face of our mission (our mission to do stuff, and things…). He is the uniting force that brings us together in times of despair.

Thank you, Sensory Sea Turtle. Thank you. May you never get suffocated by oceanic trash. We love you.

xo kelly

The Things I Need

The following blog blerg post is short writing piece I sent to The Mighty, a website that publishes short stories that empower the human spirit, specifically, human spirits with various disabilities or special needs. Anyone can send a story to this website, so I spent quite a while writing this little number below, as well as created two illustrations to go along with it. After all, who would I be if I didn’t include an awkward illustration in my blerg posts?

To my dismay, I received an email stating that this was not going to be published on their website, but they would be happy to receive other/different stories from me in the future.

Still, I wrote from the recesses of my shoul (yes, my shoul); I spent a lot of time working on this, and it would be wrong to keep it to myself knowing that someone out there might benefit from my words.

So I’m sharing it with you, dear reader:

The Things I Need

I am someone who has lived with a neurological condition my entire life. At the ripe old age of twenty-four, it has become clear to me what I need from those around me, and more importantly, what I don’t need.

I have learned that people are generally very uncomfortable and rather ignorant when it comes to interaction with those of us who are dealing with any sort of brain dysfunction. Whether it be mental health problems, or autism, or epilepsy – the gray mushy blob in our skulls causes us to experience numerous struggles to which people often don’t know how to react.

This lack of awareness in the world has caused me to place a high value on the few people in my life who have shown a great depth of understanding for my unique challenges. These people are my gold. It wasn’t until recently that I wondered as to why I prized these people the way I did. My thoughts traveled to the idea that, as a person with a disability, I need certain things from people around me. But these things weren’t really things, they were intangible; they were tiny, unforgettable moments of compassion and empathy.

They were things I needed to feel.

A question arose in my mind. How I don’t want people to make me feel?

The answers appeared slowly, accompanied by a sinking feeling somewhere deep within my chest: burdening, weak, dramatic, pathetic, incapable, overwhelming.

I don’t need a doctor to make me feel like I’ve wasted his time. I don’t need someone to tell me to “snap out of” my depression or anxiety. I don’t need people to assume what I’m able and not able to do. I don’t need people to separate me from my condition, as if it’s an insult to be considered disabled or ill.

Those are the things I don’t need.

So the question then became, how do I want people to make me feel?

The answers entered my mind quickly and randomly, in bursts, suddenly like bright fireworks against a dark sky: loved, supported, strong, independent, accepted, wanted.

I know now that the people in my life who I value like gold not only make me feel the things I do need to feel, but they erase the possibility that I could ever feel the things I don’t need to feel. Burdening, weak, dramatic, pathetic, incapable, or overwhelming; these are not options, ever.

I need someone to say to me, “Damn, this sucks. Let’s lay on the couch today and just talk and eat cupcakes.” I need medical professionals to treat me like a person, and not a number. I need honesty, laughter, and equal amounts optimism and pessimism (for when I don’t want to pretend to be happy and positive for five minutes, please). I need someone to hug me for no reason – and I mean, a real hug, not one of those crummy-half-pat-on-the-back-for-two-seconds hugs.

As one of my most beloved writers, Maya Angelou, stated, “At the end of the day, people won’t remember what you said or did, they will remember how you made them feel.”

xo Kelly