disability

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?

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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?”

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

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How Harry Potter saved my mental health

Ok, so maybe Harry Potter didn’t really save my mental health. He saved the ENTIRE WORLD from Lord Voldemort. All Hell broke loose at the Battle of Hogwarts, and Harry claimed victory, (even though Hermione did ALL the work but that’s not the point I’m trying to make). Since the beginning of the end, AKA middle school, the Harry Potter series has had a tremendous influence in my life.

Potthead Puberty

I read the books on the school bus every morning as a distraction from the impending doom and anxiety that awaited me at my destination.

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I read during study hall.

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*Except for that one year, where my study hall teacher was the wife of Satan…

damn kids!

I read on the ride back home.

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It was middle school that taught me that the majority of other people my age were severely lacking in moral fiber, rational thinking, and general intellect. These are not qualities that a young girl needs during a time of mental and emotional turmoil. My peers were alien to me, and so, I sealed myself shut within the pages of the HP books; a safe and comforting place to be.

One of the Gang

Soon, the films were created. Amazingly, I was the same age as the actors playing the main characters: Harry, Ron and Hermione. When they were eleven years of age and starting their first term at Hogwarts, I was nearly eleven myself. What a coincidence, I thought to myself, it’s like I was supposed to be at Hogwarts too.

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As my neurological crap grew increasingly more devastating, I propelled myself into the world of wizardry and witchcraft. No human bodily malfunction could bring me down me, I WAS A WITCH IN TRAINING. There was bound to be some spell to alleviate all this junk happening in my life.

I clung to the ridiculous and impossible chance that I would receive my letter to Hogwarts. I fantasized about the day I would look out my window and spot a doofy owl hurling itself towards my house, a tiny white envelope clutched tightly in it’s possession. I would retrieve the letter containing my acceptance, and my life problems would simply vanish. My salvation and mental health were dependent solely upon my acceptance to Hogwarts.

GOODBYELIFEPROBLEMS

My letter never came.

I started high school in September, trying to retain a sense of normalcy despite the fact that everything was not normal. My anxiety, depression, and sensory processing disorder reached a record high score on the “How Much Does Your Life Suck Right Now” meter. I was brought to doctors and therapists of all kinds, and in return, I received puzzled expressions or bottles of pills that made everything worse.  But I still had Harry Potter.

At the end of my freshman year I was pulled out of school because I was so ill. During that summer, I painted murals all over my walls – my own art therapy. Sprawled across one wall, monumental and extraordinary, was my rendering of Hogwarts Castle. Above it was a portrait of Harry surrounded by his name. In my little miserable world, it was breathtaking and comforting.

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PERFECTION

*Note: The mural truly looked like this. It was ginormous and super awesomesauce.

The years grudgingly went by….

The one constant in my life was Harry’s journey. During the deep, unrelenting surges of depression, anxiety, anger, and isolation, the wizarding world was my safe haven – an alternative reality. Granted, things were not super great in Harry’s world either. Lord Voldemort was trying to kill him, and he was trying to kill Lord Voldemort; it was not all butterbeer and chocolate frogs, if you know what I mean.

But the idea of it all – the story from start to finish – carried me away.

Here I am, 24 years alive, and still awaiting my Hogwarts letter. Santa bought me a fake one for Christmas a few years ago – was he seriously foolish enough to think I’d fall for that crapsauce? Would YOU fall for this?? (note: the fuzzy yellow caterpillar was not included in the original letter. I drew it there to cover my address. I don’t need internet hooligans knowing where I live).

(click to view bigger):

new hogwarts letter

I do not want to identify myself as a muggle (non-magic folk), for that would delete my rich, inner fantasy life that keeps me afloat in moments of suffering. I am the owner of a wand – with a tip that lights up when the wand is waved. I have a Hogwarts cloak, Gryffindor scarf and hat, Harry Potter quiz book, a 200 lb Harry Potter encyclopedia of sorts, Harry Bobble head, Snape action figure, and a million more things which you don’t probably give a crap about.

Dementors and Depression

By engulfing myself into the wizarding world, my numerous illnesses morph into Dementors; soul-sucking, happiness-destroying, butt-ugly creatures. Dementors cannot be killed, only kept at bay until they die from natural causes, or from crashing into the night bus.

Either way, you must use the Patronus Charm to protect yourself from the Dementor’s kiss of death (it’s as delightful as it sounds). The Patronus Charm is conjured by concentrating intensely on your happiest memory while stating the words, Expecto Patronum. Your wand should release a glowing animal figure which will defend you from the Dementors.  Expecto Patronum can be roughly translated from Latin to mean “I await a protector.”

“Ok Kelly, that’s real fascinating, but how does this all relate to depression?” -You

“GIVE ME A MINUTE, WOULD YOU? THIS IS COMPLICATED MATERIAL!” -Me

 

The author of Harry Potter, JK Rowling has confirmed that she created the Dementors after her own experience with depression. She stated: “Dementors are among the foulest creatures that walk this earth. They infest the darkest, filthiest places, they glory in decay and despair, they drain peace, hope, and happiness out of the air around them”.

expecto patronum

The story of Harry Potter has given me unrelenting strength when facing situations that I was certain would be my demise. When curled into a blobby ball of emptiness, it is the thought of the antics of Fred and George that bring a stupid smile to my face. It is Hermione being a general badass. It is Ron dancing awkwardly with Professor McGonagal. It is Severus Snape, dashing around down the castle halls with his cloak billowing behind him like a majestic, dark stallion. It is Harry, doing…ugh…whatever it is that Harry does.

 

In conclusion, I’d like to amend my original statement to this: Harry Potter did save my mental health. Thanks, Harry…cough…cough..Hermione.

xo kelly

 

 

Personal Hell: Visiting a psychiatrist

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

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

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

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

——————————–

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

Definition: Therapeutize: to use therapeutic techniques.

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

——————————-

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

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

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

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

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

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well times up

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

so anxiety

fascinating

why yes i am

wow congrats

thank you darling

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

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

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

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

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xo kelly

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

 

 

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.

 

 

 

What School Is Like For The Sensory Sensitive

It’s that time of year again, SCHOOL’S STARTING, and for the sensory sensitive, you know what that means…

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That’s right. Time to scream and run for the hills.

I thought I’d make a blog post about school, because for me and many of you reading this blog, school was an awful time. This post will be about my personal experience with school, but please realize that – like most things – our disabilities and experiences run on a spectrum. This means that my experience may be vastly different from yours, even if we have the same set of problems. Still, I’m sure everyone will relate to what I’m about to say.

Now that the mumbo jumbo is over, let’s take a trip down memory lane:

Preschool was a fun and exciting adventure for me. I got to leave my mom, and go to a land of noisy, confusing, miniature idiots. Preschool went like this:

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Ma left me with the idiots, but only for a short while until she figured out that preschool just wasn’t for me. So I stayed home and focused on more important things:

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Soon enough, kindergarten arrived. Ready or not, I had to go. Well, I didn’t always go. Guess who had the award for most school absences ever? Yea, it was me. You guessed correctly, good job.

This pattern continued for like, ever.

I had my reasons….

Meanwhile on the school bus:

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The students had faded to loud, swirly blobs that encompassed all my hatred of school bus traveling.

Meanwhile, in the classroom:

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Sometimes, I became desperate and mentally deranged. Things got violent, sort of:

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(Ok so, that last bit never happened. But you get the point… no pun intended).

Meanwhile, in the cafeteria:

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Then middle school rolled along, and hey, it sucked too! Especially in 7th/8th grade, where my sensory sensitivities escalated for some reason. I still don’t know why that happened, I can only speculate what happened in my brain:

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In middle school, I was diagnosed with Hyperacusis, which is the inability to tolerate normal sounds. When I say “normal,” I’m referring to the sound of someone’s voice, or the sound of a car/bus passing, or the sound of a chair being pushed under a desk.

My other senses were heightened as well – just as they always were – but my noise intolerance dominated my life. It was around this time that I turned to drawing as a source of coping.

In high school, life suckage reached an all time high. The expectation of me getting through the day was flawed and destined for failure.

The idiots from preschool were basically the same:

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I began to think things:

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There was forced learning collaboration with students I’d wish to avoid at all costs:

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There was also lockers slamming, constant switching of classes, 7+ hours of constant sensory bombardment, and the expectation to perform academically, socially, etc.  Also…FIRE DRILLS. I’m lucky to have survived, honestly.

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Looking back at my time in school, I see a blurry mess of anxiety, stress, homework, noise, and tiny moments of joy. I know the same can be said for everyone living with sensory sensitivities or full-blown SPD. Luckily, times are changing and society is becoming more aware and more tolerant of our unique set of circumstances and needs. Who knows, maybe one day I will start the first SPD Academy, and school will be a freakin’ great time for everyone.

xo kelly

SPD vs just being sensitive

I have found that there appears to be a bit of confusion as to what it means to be sensory sensitive.

This confusion comes in many forms.

One area of confusion is often with children. I have read about and seen several instances where children display very poor behavior and their parent(s) explains that they have a sensory processing disorder (or something of that nature). While I don’t doubt that children with sensory sensitivities are prone to tantrums, meltdowns, and strange behavior or movements, SPD is becoming the name given to out-of-control children as an excuse for their behavior.

For example, I was in a bookstore and there was a young boy running around, making too much noise, taking things off the shelves, and generally causing mayhem and not caring what his mother had to say about it. I overheard his mother tell someone, “Well, he has the sensory processing thing, so…”

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Who knows. Maybe this four year old boy did have sensory issues, but that shouldn’t be the excuse for his unruly behavior. Unfortunately, I see this a lot. It is becoming a default diagnosis for badly behaved children who don’t fit into other categories. It sounds like this:

“Your child likes to throw and break stuff? SPD.”

“Your child doesn’t listen to you at all? SPD.”

“Your child screams and punches you? SPD.”

This is very scary, considering the fact that I know how real SPD is, and that there are many children and adults with it, yet, it is becoming very much like ADHD in that it is being overly-used to compensate for lack of decent parenting or other issues in children. Then what happens is that people who DO have sensory issues are not taken seriously by the medical community.

 

The second area of confusion I’ve noticed is that there are people who don’t understand the concept of SPD and claim that every little thing that bothers or annoys them is because of a sensory processing issue. This is not true.

So let me give you a little demonstration:

Person WITHOUT SPD (a generally sensitive person):

Picture 5

TWO SECONDS LATER….

Picture 8

 

Person WITH SPD (a person with a sensory disorder):

Picture 9

TWO SECONDS LATER….

Picture 11

 

Can you see the difference?

A person who is generally sensitive to things may be bothered by something, but they have the ability  to push that sensitivity into the back of their mind. It no longer bothers them, and maybe they notice it….but they have the ability to remain calm and focus on other things despite this sensory annoyance.

A person who has SPD cannot stop perceiving sensory input (unless you are a hypo-sensitive person who needs MORE sensory input, than this little bit doesn’t apply to you, but you get the gist). The jeans are more than uncomfortable – they are disturbing and nothing else matters (NOT EVEN CUPCAKES) because my brain cannot stop being upset with the sensation of denim jeans on my legs. I cannot focus on anything else, and I definitely do not feel calm.

The latter story ends something like this:

Picture 21

 

I hope this post has helped clarify the difference between being annoyed by a sensation, and having a sensory problem. As usual, comments or discussion is welcome!

Also, here’s me and a giant cupcake:

Picture 22

 

-xoxo kelly