sensory

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.

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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.

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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

SPD is not a “dubious diagnosis”

There I was, spending a quiet evening at home, munching diligently on some freshly-baked oatmeal cookies when my eyes scanned the internet headline “Why ‘Sensory Integration Disorder’ Is A Dubious Diagnosis.” The author of the article, Peter L. Heilbroner, MD, PhD, states that Sensory Processing Disorder (or Sensory Integration Disorder, as it’s also known) is not a real condition.

cookies yay

As I began to violently shovel oatmeal cookies into my mouth, I read and re-read his article over and over. Below, I have written a counter-argument, because I believe Sensory Processing Disorder is real and those of us with SPD deserve advocacy. Since I am an adult with SPD, I will do the advocating!

His argument:

“Many children with autism have “sensory issues” such as oversensitivity to touch. Similar symptoms occur with other neurodevelopmental and behavioral problems (including attention-deficit/hyperactivity disorder) and anxiety disorders. However, the prevailing medical view is that “sensory symptoms” are a nonspecific indicator of neurodevelopmental immaturity rather than a distinct disorder. Such symptoms can also occur in children considered normal.”

My argument:

Yes, many children with autism do have sensory issues, as do children with various other neurological disorders. And yes, sensory issues can come about throughout early childhood as the brain is still developing and growing, and this is totally normal.

But, when children are struggling for long periods of time with basic sensory-related acts, it’s time to question whether or not that child is neurologically immature, or if there’s an actual problem with the child’s neurology that needs fixing.

His argument:

“Moreover, except in cases of autism, these sensory symptoms are virtually always outgrown. Do you know of any non-autistic adults with the type of “sensory problems” said to occur in SID? I work in the largest neurology group in my state. Although we see every conceivable neurological complaint, I have yet to hear from my colleagues of even one case of “SID” in an adult. In my experience, children who had been diagnosed with “SID” were overly anxious and come from a family that includes others who suffer from an anxiety disorder.”

My argument:

First thing’s first. Ok, I’ll admit it: those of us with SPD are usually very anxious people. But why are we so anxious? Oh yes, it’s because our sensory difficulties make ordinary life tasks difficult and anxiety producing. I know for myself, anxiety and sensory issues are two separate things, but SPD can make my anxiety worse, and anxiety can make my SPD worse. However, I rarely confuse the two – or smush them together as one – because their symptoms manifest very differently.

Second, just because you haven’t personally met an adult with a sensory disorder does not mean that these people do not exist. I’m telling you – there are thousands of adults with SPD, many of us are living with no diagnosis for various reasons. Some of us struggle so immensely with our SPD that we cannot live normal lives. Thanks to the internet, many adults have reached out for help and found support. They are startled to find that their symptoms are shockingly similar – not just regarding anxiety, but symptoms such as extremely poor coordination, or severe distress around bright lights, or the inability to wear certain fabrics, or feeling ill around certain odors. These people are not autistic, yet they suffer from severe sensory issues.

hello hi im here

His argument:

“Since few (if any) adult patients have SID, it is reasonable to question whether costly interventions are really necessary for what are most likely self-limiting problems of neurodevelopmental immaturity and anxiety.”

My argument:

Am I “neurodevelopmentally immature?” Gee, I hope not. I like to think of myself as “neurodevelopmentally unique or divergent.” The different wording makes it sound less like I’m to blame for my own neurological problems, and it gives me more hope that I can manage my life better.

Costly research and interventions have helped change the lives of millions of people with neurological disorders. Without research and treatment exploration, people living with conditions such as autism, epilepsy, PTSD and other disorders of the brain would still be receiving inappropriate treatment, or none at all. Some of these conditions were completely misunderstood and stigmatized until science – and humanity – caught up. I want the same to be said for Sensory Processing Disorder.

Here is a link to a recent study that found quantifiable differences in the brain structure of children with Sensory Processing Disorder. This is the first time science has found biological evidence of SPD:

Breakthrough Study Reveals Biological Basis for Sensory Processing Disorders in Kids

His bottomline:

“Most children develop and improve their behavior spontaneously. Since few (if any) adult patients have SID, it is reasonable to question whether costly interventions are really necessary for what are most likely self-limiting problems of neurodevelopmental immaturity and anxiety. Well-designed scientific studies are needed to determine whether or not SID is a definable disorder, and even if so, whether the treatments currently prescribed are effective or necessary. Until studies along these lines are conducted, the diagnosis of SID should prompt a healthy degree of skepticism. Working with a friendly and relaxed therapist can be calming to children. I believe that families with children with behavioral or anxiety disorders would be better off getting standard treatment than investing time and money in unproven approaches.”

My bottomline:

Don’t rush into investing time and money on treating sensory issues before you truly know if sensory issues are the problem. Anxiety treatment is not the same as sensory treatment, but treating anxiety can help a person with sensory issues. Visit an Occupational Therapist to see if what you’re experiencing is SPD or something else. It’s rarely a good idea to self-diagnose and treat. An OT will be able to provide a diagnosis and treatment plan specifically designed to help sort out sensory issues.

Most importantly, adults with Sensory Processing Disorder do exist, and SPD is definitely not a dubious diagnosis.

Here is the link to the article by Mr. Heilbroner if you wish to read it in full: http://www.quackwatch.com/01QuackeryRelatedTopics/sid.html

What are your thoughts on this topic?

-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).

The Attic

Some people have stairs leading to their attic. Some people don’t even have an attic. Then there are some people, like my parents, who had a ladder leading up to the attic.

The attic; a strange, foreign land of trinkets from years past, balls of tangled Christmas lights, and deadly creatures. My childhood fascination with such a space overwhelmed me. In the rare moments when the attic door was opened and the ladder would reveal itself, my insides tingled anxiously. It was as if I was staring into the vast reaches of outer space; the universe in all its complexity and mystery lay just beyond the top of the ladder. Green slime oozed from the edges of the attic, surely an indication of some other-worldly experience.

I was enamored with the attic. It was terrifying and amazing; it was terrifazing. Amazifying? Whatever. My youthful spirit longed to know of its secrets.

Soon enough, that fated day arrived when I would experience the attic. Dad needed to retrieve something in a box up there, and I saw my golden opportunity. This is it, I thought to myself, this is your moment.

With my emotional security blanket (which I named Star) tied firmly around my neck like a cape, I began to ascend the ladder.

How I thought it was:

How it really was:

As the wind began to pick up, I tightened Star around me and secured my grip on the ladder. Nearly at the top, there was no telling what awaited me. The anticipation was overwhelming.

Alas! I had reached the surface to discover a world of boxes filled with junk I didn’t really care about, yet I was overjoyed to explore this new, vast wilderness.

After what seemed like only a few minutes (probably because it only was a few minutes), I heard the call of my parents from the world below. It was time to descend the ladder and bid farewell to the new world. As I crept near the opening from which I came, it occurred to me exactly how high up I was. The task ahead required me to turn and go down the ladder. Thanks to my sensory problem, this seemingly simple action became my equivalent of bungy jumping off the empire state building into a pit of blood-thirsty wolves.

With this revelation began a true anxiety meltdown in the four foot high space on the attic. No amount of coaxing or words of reassurance from my family below were alleviating my overwhelming panic. The prospect of having to go backwards down the ladder was truly disturbing and frightening to me. As an adult looking back on the situation, I agree with my childhood self for getting upset. This was a totally rational situation to meltdown over.

It was during mid-crisis in the attic when I realized that the attic was a slightly creepy place to be. Looking around, it became clear to me that there was plenty of potential for evil creatures to jump out of the darkness and swallow me whole. Above me, giant nails protruded through the ceiling, as if a monster was clawing at the house trying to get me. (I later realized these were nails which held the shingles in place.) But things got worse. The beams supporting the roof were covered in some sort of gross, sticky brown substance. A Christmas tree loomed in the corner, ready to attack me with holiday cheer. An old toy doll …well, let’s just say she was the new bride of Chuckie.

I wrapped my blanket, Star, around my head like a veil. It was my only ally and source of protection in this strange and dangerous land.

The minutes passed as my family failed to convince me to climb back down the ladder. I became a incoherent blob. As far as I was concerned, I was never coming down. This would be where I’d spend the rest of my sorry little life. My fate hit me like a ton of bricks.

Suddenly, Dad appeared at the top of the ladder. Again, I assured him I would not be making the descent back to the mortal world. He managed to convince me to hold onto him and close my eyes. He held me and climbed down the ladder; it was the scariest 3 seconds of my young life. I felt like Carol Anne as she was sucked away from the demons of the underworld in that movie, Poltergeist. I can’t believe we made it down alive. To be able to live among my earth family yet again was such a relief.

To this day, climbing any kind of ladder disorients my body and mind. The fear takes me back to that fated day in the attic. Will I ever be able to conquer this body-ladder coordination conundrum? Only time will tell.

Also, F.U. to my sensory problems. Struggling to stand on a basic 2-step ladder is super embarrassing and mildly inconvenient.

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

Personal Hell: Visiting a psychiatrist

When I’m being treated by a psychiatrist, I imagine I’m on the popular television show, Jeopardy. It goes like this:

Throughout my twenty-four years of existence, I’ve had a heaping amount of visits to doctors of all kinds in an attempt to manage my numerous life issues – my sensory processing disorder being at the forefront.

I believe psychiatric/psychological help is imperative when dealing with physical illness. So darn it all, I’ve got to pull on my big girl panties and get stuff done, no matter how miserable it is to visit a psychiatrist.

I never enjoy going to see a psychiatrist. If I had $5 for every bizarre session with a psychiatrist, I could probably afford to go to medical school, become a psychiatrist, and THERAPEUTIZE myself.

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As usual, I just made up another word: therapeutize.

Definition: Therapeutize: to use therapeutic techniques.

In a sentence: “I’m going through a tough time with my wife, if I could only therapeutize my marriage back to where it used to be, we’d be happy again.”

——————————-

Psychiatrists never seem to pick good locations for their offices. Unfortunately for me, these locations are sensory UNFRIENDLY. I’m uncertain whether or not these locations are chosen on purpose.

One psychiatrist had the office lights so bright, I almost couldn’t open my eyes. That was a fun visit.

Another had a million winding stairs up to the office, like one of those M.C. Escher paintings. I felt like I could die at any moment whilst making my way to the top. Additionally, it was nearby a train station, so periodically, the train would blare its horn and I would feel my lungs give out from the intensity of the sound. I’d grip the staircase railing, waiting for death.

Some psychiatrists have leather couches to sit on. I don’t know about you, but my body doesn’t understand leather. It’s shiny, and rubbery. My body actually hates me when I sit on leathery surfaces, as I find myself sliding right off and into a pathetic puddle on the floor.

Some psychiatrists don’t understand my sensory needs at all, which is both humorous and sadly ironic. For example, everything they do is often very noisy, including speaking. It’s not done intentionally, but most of them are so oblivious that they don’t even notice how sensory unfriendly they are. Even if I tell them directly about the nature of my issues, all psychiatrists seem to live in their own psychiatric bubble. Must be nice there…

Even WORSE is when I’m in the middle of an appointment, and I REALIZE the absurdity of what is happening. I want to explode with rage and hurl various sized fruits at the ignorant person in front of me. Problem is, I never remember to bring the fruit with me.

Still, the most difficult part of all of these psychiatric visits is when I have to think critically about myself and answer endless complicated questions.

How do you feel? How are you feeling? Describe that process? Can you give me an example of a time when your SPD did this or that and why it made you behave in this or that manner? The severity of anxiety and depression dissociative tendencies increases or decreases when compounded with the negative associations of certain stimuli with which you are negatively associated on the grounds ohfds hfds hjbdnjcfnd sun43uhu nfjdnsf

My brain, now reduced to a mushy potato, replies:

When it’s all over, I have an overwhelming urge to fill a void in my delicate psyche (created by psychiatrists poking at it too much). There is only one remedy for this kind of destruction:

xo kelly

p.s. Please send all cake to me, I will stuff it into my psyche void. Thank you.

If Disney Princesses Had SPD/ASD

In all Disney movies, the “Disney princess” faces various, complicated obstacles. However, I cannot think of a single princess that has faced a real-life disability or disease. Then I thought, what if Disney Princesses had Sensory Processing Disorder? What if they were on the autistic spectrum?

The following is my prediction of what Disney princesses (and their stories) would be like if they had SPD/ASD.

(Also, for the first time ever, I did not draw any original illustrations for this post. Instead, I added my own bits to Disney pictures. I hope you enjoy it anyway.)

Cinderella

Ok, I’m skipping right to the part in the story where Cinderella goes to the Ball. Logically, if Cinderella had sensory issues, this would never work. Sure she could give it a good effort, but in the end, a meltdown is likely to ensue. No sensory sensitive princess leaves untouched after a large royal gathering.

We all know how that ends.

Belle

The most glaring problem here is the fact that Belle is in a relationship with an unstable beast. Belle would find herself overstimulated, unsupported and for lack of a better word, really turned-off by the beast’s intense personality.

Additionally, there is ABSOLUTELY NO WAY that Belle could have soared around the library on that freaking bookshelf ladder.

Pocahontas

While she does live in the peacefulness of nature, Pocahontas would most likely not be flinging herself over waterfalls and just around the river bend. Hello! This is too much to ask of any sensory sensitive princess’s motor skills.

Not to mention, she has to deal with a bunch of gun-wielding maniacs who want to destroy the Earth and Grandmother Willow. Talk about stress! Better hope a girl’s got some sensory tools in that longhouse of hers.

Merida & Rapunzel

All I can say is: HAIR.

I’m still adjusting to my shoulder length hair after years of having short hair. Of course, Merida and Rapunzel may find their excessive hair very soothing, but to imagine having the hair of either of these ladies is beyond my comprehension. The only exception would be that scene where Rapunzel wraps herself tightly in her hair after rolling down a hill. She’s got her own personal deep pressure device.

Jasmine

When I look at Jasmine, the first thing that pops into my mind are those ginormous earrings. Alright, so she’s royalty and gold earrings are traditional attire for your basic princess, still, Jasmine appears to have two heavy triangular-shaped fruits hanging by her face, smacking into her whenever she turns her head too quickly. The sensation of those ALONE would be enough to make any princess lose it.

Jasmine is lucky however, because she has a large tiger friend to provide her with lots of sensory tactile relief. I need a large animal to squish me and stuff.

Ariel

This one’s pretty obvious: SHELL BRA.

No further comments.

Mulan

I’ll admit that I’m kinda biased here because Mulan is my most favorite Disney Princess. Not only did she sneak her way into the Chinese military, but she defeated the vicious Huns and saved an entire country with some uncoordinated soldiers, the Eddie Murphy dragon, and a cricket.

If Mulan had sensory issues, China would have been overtaken by the Huns and everything would be terrible. Yes I said it. She’s trying to save an entire country – I’m certain she would have no time to take sensory breaks. Even if she survived the military training, I do not think her sensory stamina would hold out for that entire duration. I’m talking about that scene where she shoots the rocket into the mountain and causes an avalanche, miraculously survives, and then goes to the city to fight the Huns with her gang of loonies. AND WINS.

The Emperor’s chaotic celebration ALONE would be a solid nope.

Dory

Technically Dory is not a princess. She is a blue fish who helped Marlin find his son. I’m including her in my list because, from my observations, Dory might have sensory/autism issues. We know that Dory has complications with short term memory, but aside from that, she’s got quirks much like those with sensory problems or autism.

Although she is friendly, she struggles with social situations, including lack of awareness of danger. Dory enjoys things like talking to whales and bouncing off jelly fish. I can only conclude Dory is a sensory-seeker. She is very sensitive, as she spends much of her time comforting others and generally being optimistic about the state of things even if the world looks bleak. She is a curious adventurer, and despite her peculiar behavior, Nemo would never have been found without Dory’s help. Perhaps things would have gone a bit smoother if Dory had brushed her fins with a sensory brush that morning.

Elsa

Unlike our favorite fish Dory, I imagine Elsa is a sensory-avoider. I almost hate to include Elsa because she has become the “celebrity” Disney princess. She has made this list, however, because Elsa displays the closest thing to what a princess would be like if she had SPD/ASD.

Although Elsa has learned to control her ice powers, her behavior and life has been drastically shaped by her condition. The same thing can be said for those of us impacted by SPD/ASD.

Elsa’s parents responded to the difficulty of their child by locking her in her room. Obviously, this was never a good idea. Elsa grew isolated and depressed.

After having a meltdown in front of basically the entire town, she ran away into the snowy mountains and built herself a fortress of ice. In the sensory world, this would be similar to you coming home after an overstimulating trip to Target and building a couch fort with blankets and pillows, and trapping yourself in the safety of the sensory-controlled space surrounded by all your favorite fidgets.

It is only until Elsa learns how to channel and manage her ice powers does her life improve. She becomes Queen, sends the bad guys home, and restores order to Arendelle. Similarly, when those of us with SPD/ASD learn to manage our various issues, we could become royals, defeat bad guys, and restore order to an entire Kingdom.

Or, we could just manage basic life skills and that would be a big freakin’ achievement too.

I may not be a Disney princess, and neither may you, but I like to dream that one day Disney will create an animated film about a princess (or prince!) with Sensory Processing Disorder or Autism. Not only will this character be most awesomesauce in every possible way, but the film will accurately portray the reality of these disorders. It will surpass Frozen and The Lion King in profits, and become the most beloved Disney film of all time ever in the history of mankind. No, my expectations are not too high. DISNEY CAN MAKE IT HAPPEN.

There you have it.

Are you (or your child) a wannabe Disney hero with SPD/ASD or something else? Tell to me in the comments and maybe Disney will see it and make a film about you.

xo kelly