autistic spectrum

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 TRUEanother 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:

  1. 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.
  2. 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):

  1. Go to a library, bookstore, or Amazon.com and get the following books: 
    1. Making Sense: A Guide to Sensory Issues by Rachel S. Schneider
    2. The Out-of-Sync Child Grows Up by Carol Kranowitz
    3. Uptight and Off Center: How Sensory Processing Disorder Throws Adults Off Balance and How to Create Stability by Sharon Heller
    4. Too Loud, Too Bright, Too Fast, Too Tight: What to Do If You Are Sensory Defensive in an Overstimulating World by Sharon Heller
  2. 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.
  3. 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.
  4. 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.

lord of the dance

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:

hot workout 1

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:

me vs bipasha

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:

sexy sway oh god 2

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:

trex dance

SULTRY STUBBED TOE

ANXIETY

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.”)

JUDGING YOU

 

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.

places to sit

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.

wave those arms!

 

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.

what the crap

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.

march workout 2

so good at marching

 

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.

bathroom 1

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?

sensory dangerous spaces chart

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.

RUIN YOUR DAY

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:

bathroom technique 1

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.

BRAIN POWERS ACTIVATE

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:

bathroom fear

And more like THIS:

make way peasants

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.

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.”

the ehh face

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.”

OrI 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?

perosn with condition

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?”

tps

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.

attic 1

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.

attic 2

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:

attic 3

How it really was:

attic 4

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.

attic 5

attic 6

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.

attic 7

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.

attic 9

 

attic 10

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.

attic 8

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.

attic 11

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.

attic 12

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.

attic 13

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

xo kelly

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:

NOT SURE IF FRY

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.

potty training

not relevant

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.

same person

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:

wut

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 FALSEanother 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.

helloworld

herrow

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 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.

life bad

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.

life good

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

I am my disability

I have Sensory Processing Disorder. Some people don’t refer to it as a disability – I do. My SPD disables me everyday; it’s impacted my life since birth. I am not ashamed or embarrassed to say this, even if some people with SPD do not consider themselves disabled. Huzzah for those guys….but I am not them.

 

Say what you mean…or mean what you say?

About three years ago, I started to hear this new, fancy term known as people first language (also called person first language or PFL). Everyone loves abbreviations, right?

As a psychology student, this term was used all the freaking time. My professors and fellow students agreed that it was the correct way to address a person who has been given the diagnosis of a certain disability/condition (neurological or physical). I will now demonstrate, for you, at this very moment, how people first language works. OK, here I go:

Instead of saying, “that boy is autistic,” you would say, “that boy with autism.”

Instead of saying, “she’s schizophrenic,” you would say, “she has schizophrenia.”

Instead of saying, “he’s learning disabled,” you would say, “he has a learning disability.”

 

People first language is using words that put the person before the disability. It is supposed to emphasize the fact that the person in question is not defined by the nature of their disability, whatever it may be. It suggests that they are not part of their disability, rather, they are a unique individual whose personality and goals are a separate entity from their disability.

 

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In my brain, this idea doesn’t exactly sit so pleasantly. There’s a lot I don’t agree with.

(Before you begin to express your dislike of my opinion in the form of rage-filled comments, please give me the opportunity to explain my reasoning.)

We have come a long way in regard to changing the way in which our society – at least westernized society – views various illnesses and disabilities. Still, neurological conditions are far behind physical conditions when it comes to social acceptance.

People first language is often used with physical conditions, such as cancer, diabetes, spina bifida, or skin problems. But when referring to many neurological conditions, PFL is often not used: anorexic/bulimic, autistic, epileptic, dyslexic, and schizophrenic are just a few examples.

Then again, I can think of disabilities and illnesses that break this rule.

People with diabetes are often called diabetics, and I’ve never come across someone who protests this wording.

Yet, we don’t say people with cancer are cancer or cancerous.

We also don’t say that people with cerebral palsy are cerebral pals…ic?

 

Back and Forth

Do you see how confusing this is? It is such a sensitive topic, and I did a great deal of research – and a lot of pacing and stimming around the room – to formulate my opinion. For the record, I am not entirely one-sided on this issue. In fact, there are several valid points supporting PFL that I agree with. In many circumstances, people do not want their disability to be part of their identity; they believe they will be seen only as disabled and nothing more.

However, I think the direction in which people lean in this PFL or non-PFL debate depends upon their relationship with their identity as a disabled person. Even though I have SPD, I accept that I am recognized as a disabled individual by many, but that knowledge does not disable me. Being comfortable with the label “disabled” allows others to see that I am more than the limitations of my disability. I do not expect people to see me as nothing more than a disabled individual because I avoid seeing myself in that way, and people sense this.

 

Disability Identity

I’ve lost count of the number of times I’ve encountered the words, “I am not my disability.”    I don’t entirely agree with this statement either.

I believe the reason we are using people first language is because society is still rather ignorant about the nature of various disabilities and illnesses. When I say ignorant, I’m also including the words judgmental, fearful, unsure, and assuming. Right about now you’re probably thinking, “gee, that’s a very bold thing to say.”  Yes it is, my internet friends, yes it is.

While people diagnosed with diseases like cancer or diabetes often face stigma, it doesn’t hold a candle to the stigma faced by those with neurological diseases.  This stigma, I suspect, has very little to do with PFL. The judgment and misunderstanding that disabled people face every day is the result of lack of education and knowledge of disabilities. The attitude towards disabled people is the attitude that has existed for so long. I think it is the mindset BEHIND the language that creates stigma.

Stigma is the big, awkward elephant in the room. (He smells quite a bit, and everyone gets used to him. Still, he’s there…being an elephant in a room. Everyone’s thinking about how he needs to be addressed, but they’re not sure where to begin. I mean, he’s an elephant – you can’t exactly carry him out.)

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“But Kelly,” you say with a skeptical tone, “isn’t stigma created by not using people first language?”

Dearest reader, I understand the mind-blowing power of words. I have snuggled in bed at 3am sobbing over a single sentence in a novel, and the next morning, questioned my sanity.  But I know that no matter what words we use to describe a disability, that disability will always be thought of in the same way, unless the stigma – the mindset behind the words – is altered. Hear me when I say just because your disability creates challenges that you wish were not part of your life does not necessarily mean that it should be disconnected from you as a person. Disabilities – differences of any kind – define who we are. They shape our personalities; they establish our moral code; they form social skills and self awareness. You are who you are because you have lived disabled, and damn it, that is part of your identity – good or bad.

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We refer to people of various sexual orientations with the words gay, bisexual, asexual, etc. You don’t hear a gay person referred to as “a person with homosexuality.” Being gay is part of who a person is; it is part of their self. Even identities that do not originate biologically, such as religious affiliation, are often considered part of a person’s identity. “I am Jewish.” “I am Agnostic.” “I am Pastafarian.” (Yes, Pastafarians are part of the Church of the Flying Spaghetti Monster, and yes, it is a real thing. Go google it and be amazed.)

 

Really, you guys? I mean, REALLY?

Are humans so oblivious and uneducated to believe that if we say the words “the autistic man”  that we will never assume there is a person inside that man with thoughts, feelings and dreams? But miraculously if we change the words to “the man with autism” suddenly, we can see beyond his disorder. Supporters of people first language use this as an argument. I’m going to be real blunt right now and let you all know I think this is kinda ridiculous. “A man with autism” and “the autistic man” do not make me think of two different people, nor does it make me think less or more of that person. Both phrases describe the same person, who has lived their life with this neurological problem which has shaped the person they have become. THIS, is what we need to be teaching and advocating for. 

Would you tell your transgender friend to think of their gender identity as a detached person who isn’t really them, but you know, still lives in their body and will always be part of their self? Could you IMAGINE THIS ABSURD CONVERSATION? (Replace the transgender topic with bipolar disorder, for example, in the conversation below.)

Random human 1: “I hear you’re a person with transgenderism. So you have your transgender self and your inner non-transgender self, correct?”

Random human 2: “Um, no. I am transgender. It is part of my self, and my being. I’m the same person inside with or without being transgender.” 

Random human 1: “But I’ve always thought that someone with transgenderism tries to separate themselves from their transgenderistic qualities because they want people to know that they are more than their transgenderism, considering it causes a lot of problems and can make life difficult in various ways, also – “

Random human 2: “Why would people think there wasn’t any more to me than my identity as a transgender person? You cannot seriously tell me that you believe that I am not ONE person, no matter what types of, or how many identities I give myself, and what connotations those identities have? Also, if you use the word transgenderistic again I will…I will…..meh, I need a cupcake to get over this level of crapsauce.”

(Note: transgenderistic is not a word. I made it up. You could probably tell. However, crapsauce is a word because I say it is.)

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 Bad Words Linger

I need to mention that despite all I’ve said here, there are words in every language that should never be used because they are only used in a degrading, ignorant way. Words like retard, mongol, midget, or schizo, are just a few that come to mind.

These words are only associated with negative connotations. They are tied to dehumanization, and nothing more. Bottom line: don’t be a goober – don’t say words like these.

 

How I See Myself

In my case, Sensory Processing Disorder is always referred to in PFL because, well, that’s just how it’s said.

Unless of course, you’re like me and say “I am an SPD’er!” SPD’er is a phrase that I use on this very blog, and one that I see on dozens of other websites. People refer to themselves, their children – their goofy uncle – as an SPD’er, and most people are fine with this.

Does my SPD suck fun and normalcy out of my life? Yes.

Does my SPD stomp all over my efforts to be a functioning adult at times? Yes.

Do I cry over it? Yes.

Has it carefully shaped my personality, my outlook on life, my goals, and my self-worth both positively and negatively? Yes.

Does connecting my disability and my identity – deeming my disability part of me, and part of what makes me, me – cause me pain, humiliation and discrimination? NO. NO WAY JOSE, AND JOSE B.

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I also have depression and anxiety – I am depressed and anxious. I’m not enraged when someone refers to me as depressed and anxious. It is what I am. In spite of this, the stigma that surrounds mental illness permeates my self-perception. I laugh in disbelief at myself, for I’m guilty of harboring discomfort when recognizing myself as a depressed and anxious person – even when I know that depression and anxiety are real illnesses, just like any other illness and I should not feel discomfort when identifying myself in that way. It is a battle that is entirely my own, as I know I can think of my depression and anxiety in the same way that I think of my SPD. I’m just not there yet, but I’ll get there sooner or later.

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But, this still sucks…a lot

I will not tell you that having a disability isn’t hard. I know it’s hard – and miserable, and annoying, and frustrating, and isolating, and a bazillion other things. But to end stigma, disabled people have to OWN their disability. For me, and other people with disabilities, it will only hurt us more if we continue to not embrace our identity. I think people first language can separate disabled individuals from their disability, as if we’re pretending the disability doesn’t exist. Honestly, I’d like my SPD (and depression and anxiety and other issues) to not exist, thank you very much, but that’s not an option right now. It’s stuck in my body, and there is nothing gained from me ignoring it. Instead, I treat it, fight it, and work my way around it; laugh at it, cry at it, and learn to love the body that carries it.

And by it, of course, I am referring to me, because I am my disability.

 

xo kelly

p.s. Sorry for the lack of blogging recently. Depression has me mostly non-functioning. What a jerk.

 

 

 

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.

cindy

 

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.

belle

 

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.

pocahontas

 

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.

merida

rapunzel

 

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

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.

ariel

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.

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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.

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

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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.

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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.

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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

Marcus and the Club

I’ve come to realize that one of my greatest obstacles in life has been (and probably will continue to be) getting people to understand my sensory processing disorder. This rings true in college, the epitome of social involvement. But as you know, social-ness is not part of my expertise, as my sensory needs consistently seem to trump successful leisure activities. I have a very specific moment engraved in my memory that highlights this struggle.

This is me sitting in class at my local community college about three years ago:

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(Yes, in case you were wondering, I was the coolest person on campus…if you couldn’t tell from the illustration).

That day was unremarkable. I, along with several other students, were waiting for the arrival of our professor, who never showed up on time. During this time, most people were on their phones viewing pointless crapsauce, or chatting with their neighbor about pointless crapsauce. Meanwhile, I spent my time doing more important things:

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Suddenly, and I mean like outta freakin’ nowhere, this guy smashes his body onto my tiny desk, interrupting my wizard battle drawing.

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After I succeeded in NOT crapping myself, I realized he swiftly took the empty seat next to mine. His name was Marcus. He looked roughly similar to this:

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Marcus never talked to me up until this point, I doubt he knew my name. He normally sat on the other side of the classroom and generally made life annoying for the professor with his shenanigans. Every now and then, he was incredibly insightful during class. This was not one of those moments.

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I was all like:

WTF-face

I realized I had to, you know, respond. So I did.

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Without missing a beat, he fired right back.

“YOU SHOULD COME CLUBBIN’ TONIGHT!”

Hold up. Did I miss something? Didn’t I already address this invitation? I didn’t feel like diving into the hundreds of reasons why I didn’t want to – and probably should never – go to a club in NYC with this random guy from school.

Luckily for me, Marcus was a real charmer.

“But, sugar, you should come tonight.”

I tried politely turning down his offer.

“No thank you,” I said again.

Marcus replied, “But why don’t you want to go clubbing? I mean, I’LL BE THERE.”

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KILL ME NOW.

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It became apparent to me that I needed to give Marcus an explanation for why I couldn’t go to the club with him. I tried the simple response; nice and straight-forward.

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Marcus stared at me with silence and uncertainty.

With nothing left to lose, I began rambling on about what I’m sure was a complicated mess of crapsauce. On the bright side, it sounded great in my head.

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*pause*

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This ridiculous charade went on for several minutes. Marcus was a persistent bewb, and I was slowly losing my faith in mankind. I was beginning to worry that I would run out of ways to explain my SPD issues to him, because no matter what I said or how I said it, Marcus didn’t grasp the concept of me being physically unable to go clubbing…whatever the heck that means.

Just when I thought it was nearly over, a female classmate with very yellow hair and about ten thousand bracelets joined in the madness. Apparently, she was also going to the club, and now I had the pair of them giving me this look:

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It was at this point that I attempted to smile, because I was out of options and kinda stressed. KILL THEM WITH KINDNESS….ERR SOMETHING.

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Fortunately, since there is mercy in this cruel world, the professor FINALLY arrived. Marcus and bracelet girl stood up and returned to their seats on the other side of the classroom.

Of course, not before shouting, “YO SUGAR, I’LL PICK YOU UP TONIGHT. THEN WE’LL GO TO THE CLUB! AWWW YEAAA.”

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Moral of the story: If you get invited to “the club” or someplace similarly sensory dangerous, do a better job explaining yourself than I did. If that doesn’t work, smile intensely until you scare the person away. The latter method has rarely failed me.

 

xo kelly

Do you have a funny experience trying to explain your special needs? Share it in the comments!

 

 

 

 

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