sensory disorder

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 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

NEWSFLASH: Adults have SPD too

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

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

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

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

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

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

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

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

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

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

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

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

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

SO WHERE ARE ALL THE ADULTS WITH SPD?

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

Moral of the story is this:

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

xo kelly

The Big Band-Aid Calamity

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

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

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

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

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

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

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

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

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

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

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

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

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

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

xo kelly

Sensory Sea Turtle

Attention sensory human beans of the earth, and beyond:

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

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

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

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

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

1. occupational hazard

2. hopeless romantic

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

4. a hot dog prison, essentially

5. gotta keep it real

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

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

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

9. time to get new frenz I suppose

10. story of my entire college experience….

11. rock on

12. demonic attire

13. in the midst of a nightmare

14. slight miscommunication

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

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

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

xo kelly

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.

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.)

“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.

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.)

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.

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.

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.

Successful Mall Girl is Successful

Once upon a time, like last week, I went to the mall to do some shopping.

(All of my SPD friends can get up off the floor now, as I’m certain all of you must have fallen out of your chairs with the sentence you just read).

But fear not, bloggy friends! Not only did I go to the mall, but I went BY MYSELF, and….

I LIVED TO BLOG ABOUT IT.

Is this a miracle? You could say that.

Is this a product of my fearless badassery and warrior-like approach to my entire life? Mostly.

Is this a freaky incident that I tried to savor as much as possible because it was so unbelievable. Yes.

Ladies and Gentlemen, it is time to recollect my astounding mall experience.

First, I had to make it through the parking lot. An SPD’er in a parking lot is usually a recipe for disaster. One horn, one beep – we are done. When I strolled through the lot, bracing myself against the painful NY coldness, I was like prey being hunted by my predator. Yet as I passed car after car, nothing happened. I hauled open the heavy doors of Dick’s Sporting Goods and threw myself inside. Awesomesauce, I thought.

Once inside, I tried to pretend like I was a very capable young woman on a shopping adventure. I also knew it was important for an SPD’er such as myself to review my body awareness – am I walking straight? Do I look like I’m dying? Do I appear as if I’m in need of psychiatric help? If YES, then it’s time to find the nearest exit. It’s a simple evaluation process:

Luckily, I was fine. Everything checked out.

Being inside the mall is one thing, but then you must have to deal with the specific environment of each store WTIHIN the mall. I began my journey at the ever-sexy Victoria’s Secret.

I was anxious. What if something happened inside? I was alone! Also, oh yea, I HAVE SPD.

Amazingly, the only bad thing that happened inside Victoria’s Secret was a shattered sense of self-esteem and general uncomfortableness.

After Victoria’s Secret, I did everything that a good little SPD human was supposed to do. I avoided candle stores. I stayed away from the food court. I dodged screaming children. However, I did do something bad….

I WENT INTO HOT TOPIC.

For those of you who don’t know, Hot Topic is a scary-looking store on the outside with lots of interesting things on the inside: Harry Potter, Frozen, Walking Dead, Disney Princesses, Adventure Time, music, earrings, magic, delight, etc.

The music in Hot Topic usually is overwhelmingly loud and as much as I love the merchandise, this place kills my SPD.

BUT AGAIN, I MARCHED OUT COMPLETELY UNTOUCHED. ANOTHER MIRACLE.

What’s happening??! I thought to myself. I should do MORE stuff!

So what did I do?

I GOT A PRETZEL AND SOME LEMONADE.

I sat on a bench, enjoyed my salty pretzel and sweet lemonade. I chuckled at the funny array of people, myself included. I felt so blessed to be doing all of it. At the same time, I remained vigilant for my top enemy.

I somehow managed to survive the encounter, so I kept going.

Through Hallmark, Macy’s, and the cheesy leather goods emporium, I frollicked like the very normal shopper that I was so desperately trying to be.

It was surreal; it was exciting; and dare I say, enjoyable?

THE FINALE

One of my greatest foes in life has to be escalators. In fact, the very first post I made on this blog was about escalators. This is the level of seriousness I’m talking about here.

Due to my perfect record so far that day, in addition to my overwhelming desire to be a complete BEAST, I marched towards the great escalators, and then I stood before them as one would do if they were about to destroy their enemy.

Escalator was all like:

And I was all like:

AND THEN I WAS LIKE:

Then it was over.

No traumatic escalator experience. I mean, I held on for dear life and looked so awkward that I could’ve out-awkwarded anyone in a 10 mile radius. BUT WHO CARES….I DID IT.

While it wasn’t a perfect time at the mall, it also wasn’t a complete disaster. More importantly, I went ALONE. I had nobody to fall back on if necessary, but I did it anyway. The successfulness of this day was in the very fact that I conquered my anxieties by going to the mall by myself while experiencing anxiety, and being ok with the unease.

I’m not sure why the sensory gods blessed me with a nice trip to the mall, but they did. I left on Cloud 9, wherever that is. Probably near here:

xo kelly

Also, I was only there for about 2 hours. This post makes it sound like I was there for 10 hours. Just wanted to let you all know…I’m pretty beast, but I’m not 10 hours beast.