aspergers syndrome

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.

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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.”

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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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Sensory Sea Turtle

Attention sensory human beans of the earth, and beyond:

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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.

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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

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2. hopeless romantic

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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).

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4. a hot dog prison, essentially

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5. gotta keep it real

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

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

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

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9. time to get new frenz I suppose

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10.  story of my entire college experience….

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11. rock on

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12. demonic attire

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13. in the midst of a nightmare

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14. slight miscommunication

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

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

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

xo kelly

 

The Things I Need

The following blog blerg post is short writing piece I sent to The Mighty, a website that publishes short stories that empower the human spirit, specifically, human spirits with various disabilities or special needs. Anyone can send a story to this website, so I spent quite a while writing this little number below, as well as created two illustrations to go along with it. After all, who would I be if I didn’t include an awkward illustration in my blerg posts?
To my dismay, I received an email stating that this was not going to be published on their website, but they would be happy to receive other/different stories from me in the future.
Still, I wrote from the recesses of my shoul (yes, my shoul); I spent a lot of time working on this, and it would be wrong to keep it to myself knowing that someone out there might benefit from my words.
So I’m sharing it with you, dear reader:

 

The Things I Need

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

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

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

They were things I needed to feel.

 

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

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

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

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’d like to buy a mattress

I recently went mattress shopping. Yes, I took advantage of the president’s day mattress sales at Sleepy’s.

I knew I wanted a FIRM mattress, and I knew this because I do some of my best sleeping on the floor. I’m letting my SPD take the complete blame for this one. The hardness of the floor pushing against my body feels super awesome.

Unfortunately, my family frequently has to poke me to make sure I’m not dead. I’m fairly certain it’s an unsettling experience for them.

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Anyway, where was I? Oh yes, THE MATTRESS STORE. Once inside, I was greeted by an overly-friendly man in pink. He had intense eyebrows

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The dilemma occured to me quickly. I had a near IMPOSSIBLE time finding the difference from one mattress to the next.  ALL the mattresses felt EXACTLY THE SAME. Was this my sensory processing disorder? Could my body have an inability to distinguish different types of pressures? I don’t know.

I DO know that it made the whole experience very daunting.

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I was instructed to lay on the mattresses for approximately 3-5 minutes. Eyebrow man said it was because it needed to conform to my body. What a load of crapsauce. There was no way I was gonna sit on each mattress for up to five minutes. I had stuff to do! Like, buy a mattress, for instance. It never seemed to end.

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I was a lost soul, wandering hopelessly and without a destination through the outer reaches of the mattress solar system.

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It became quickly overwhelming. I did what my body told me to do, which was to go to each and every mattress in the store and pick up the little flap at the bottom and read the information about the specific mattress. I did this for about 50 mattresses. Luckily for me, eyebrow man was distracted with other customers, so everything sorted itself out.

 

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At one point, I tried a super expensive mattress that nearly sucked me into the underworld.

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In the end, I went for a firm mattress with a pillow top. I also upgraded from a twin to a FULL SIZE bed. (GET ON MY LEVEL).

The tag on my mattress said this, roughly:

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And so, I essentially purchased a very expensive boulder. I most likely could’ve chosen any mattress and it would have felt like the same damn mattress to me. What matters, however, was the experience. I’ve slept on my new rock-hard mattress for a few days now, and let me tell you, I don’t want to leave my bed. You should be impressed that I reached my computer to even make this post. Even now, I can hear my new mattress calling my name.

“kelly………..come lay with me……kelly…..”

I should get going. I have to lay in my bed and stare at my ceiling.

xo kelly

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:

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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.

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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.

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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.

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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.

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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?

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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.

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Escalator was all like:

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And I was all like:

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AND THEN I WAS LIKE:

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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:

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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.