aspergers

The Line We Toe with Neurodiversity

Lately, I’ve been seeing so much stuff online normalizing people with neurological conditions, but in a way that I feel is doing a great deal of damage. It’s been hard to find the words to describe what exactly is wrong with the “neurodiversity movement” because I fear I will be torn to shreds by all the special needs parents, purely because I’m not repeating the same mantra as everyone else. (Like, is the term special needs considered demeaning? I don’t know anymore.)

So if this post leads to my internet death, so be it. (Although I’ve always wanted to die through a crazy encounter with a giant bird of prey, but let’s get back to the blog here…)

In our mysterious politically correct world, we want everything and everyone to be so special and wonderful and great. We don’t want to offend anyone, or make anyone uncomfortable, or deal with trauma and pain.

It’s all good, all the time. And if it’s not good, it will be good again very quickly I swear DON’T PANIC EVERYTHING’S FINE STOP PANICKING.

It all begs the question: are we learning to look on the bright side, or are we learning to only look on the bright side because the other side is not ok? I repeat, It’s not OK. Don’t look over there. Hide yo kids, hide yo wife, etc.

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Where Things Get Icky

We spend so much time reading about how people with neurological conditions are “beating the odds” and “finding their passion” and “bringing uniqueness to the world.” The flawless-looking Instagram mom posts a photo of her 5 year-old son, he has autism and epilepsy. In the photo he’s smiling peacefully, using an organic pencil to create a piece of abstract artwork (which honestly looks amazing, holy crap) while the sun shines gently on the scene. Her husband is so handsome it’s shocking, and they all live in a jaw-dropping home straight out of Disgustingly Rich Southern Living Magazine, where they were a featured family in Issue 23.

There will, however, be no Instagram photo of that morning, when that same boy had a massive meltdown because he had to get his hair brushed. She won’t be posting a selfie of her tired face, as she was up all night with him dealing with side effects from his new medication. His younger sibling won’t sleep through the night, and she misses quality time with husband, and her eldest child is being bullied at school. (AND, her husband is also secretly one of those robot husbands fabricated in Japan, and a few friends are suspicious but none will ever say, “hey gurl, I’m pretty sure your husband is a robot.”)

You’ll see photos of her special, unique family, with all their blessings.

Her son with various special needs (there I go again with that term…am I to be executed now?) is unique, he is amazing, he is beautiful – he is a blessing. But the reality they face everyday raising a child with circumstances unthinkable to many is significantly less beautiful, and significantly less of a blessing. When you’re up to 3am because you’re having a panic attack for 7 hours about him, it’s not beautiful, and blessed is the opposite word to describe you feel.

Neurodiversity on the Street

The neurodiversity movement has exploded, thanks in part to the internet. (Thanks Internet, even though you can be annoying, you are still pretty cool.)

This means that people with atypical brains are being recognized and supported in more ways than ever. You can go up to any old person on the street and ask them, “What is autism?” and chances are, they will actually know something about autism. They may even know someone with autism and have an understanding of how this condition manifests itself in various people.

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If everything sounds so hunky-dory, than why on this great Earth am I making a blog post about it?

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The main source of neurodiversity influence for neurotypical people is the media. I’m looking at you, Facebook and Netflix. While it’s wonderful that millions of people are exposed to the realities of living with a different kind of brain, that reality is often skewed to fit an idea of what neurodiversity should be.

It’s almost like one of those Pinterest projects. You try to make those gorgeous red velvet cupcakes for your upcoming Christmas party. The photo you saw on Pinterest looked delicious and cute, but when you made them, your cupcakes looked like victims of a murder, and the taste was bland and filled with disappointment.

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The conversation being had about neurodiversity looks wonderful, but the reality is not so wonderful for the people directly impacted by neurodiversity. I’m not saying neurodiverse people are ugly cupcakes, but if I could create a visual of my life when things are really shitty, that visual would be of an ugly cupcake.

The Crux of the Matter

There is something lurking below the surface of this neurodiversity movement. It’s something that’s already been brewing for a while, but has the potential to overflow and make a big mess if it’s not addressed. It’s part of the not-always-so-glamorous-reality that we face as people with unique mindscapes. (Yes, mindscape, like landscape but of the mind. Think Bob Ross, but with less happy trees and more hippocampus.)

When we push people to accept neurodiverse individuals as “normal, but different” we create the belief that these people do not need any help. We put them on a pedestal of “YOU ARE PERFECT THE WAY YOU ARE, NEVER CHANGE.” Like something we write in our best friend’s yearbook at the end of middle school, we mean well.

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Ok, I’m not on fire, but you get my point?

It’s easy to reassure someone that they should be celebrated because of their unique neurological makeup when you aren’t the person with the unique neurological makeup.

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Maybe we don’t want ND people to change. We appreciate and love them just the way they are. But what if they could be themselves without all of the struggles? Our love for them wouldn’t change, and their lives would be easier.

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I often hear, “But my/my child’s/my partner’s life journey with this condition is part of who I am/they are. We should learn to love ourselves and others as they are. If you take that away, it wouldn’t be me/them anymore.”

As a person with an atypical brain (god bless you, you dysfunctional piece of meat), I can tell you, I am more than just a little different. I am not able to do many normal things. Sometimes I can do normal things, but then I pay for it later. (Sensory people you know what I’m talking about here.) I have gotten very skilled at pretending to be normal in many situations.

The thing is, I want to change. The way I am – the way my brain is – is freaking annoying. Basic activities can be hard and frustrating. It’s often stressful for my family. I’m exhausted from my life, and I’m only 27. I don’t have any spectacular mental gifts; I have spectacularly bad vestibular regulation.

Would I still have turned into the person I am today without having to manage a confusing and craptastic life of SPD? Yes, probably. And maybe I could have avoided dealing with the crippling depression and anxiety that comes with it. My SPD has made me who I am, but I would much rather it didn’t.

I’m still me with or without my neurological problem. It has shaped the person I am today, but it has added so much negativity that the few positives barely register as valuable to me.

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Many advocates for neurodiversity are campaigning for ND people to have long-lasting careers, date, socialize, participate in society in every way that NT people do. Unfortunately, this is not always possible. Again, like the Pinterest cupcakes, it sounds like a good idea, but reality has a different plan.

These people mean well, but unless they have lived it, it can be hard to understand the complexities of why “normalcy” may never be achieved.

For a person with high-functioning autism, for example, normalcy is possible in many ways. For a non-verbal person with autism who needs constant care and therapy left and right, this is significantly less possible. To suggest otherwise is undermining the reality many people and their families face everyday.

If we push neurodiversty as a normal thing, then we forget that having a dysfunctional brain condition is not normal at all.

Pushing neurodiversity as “normal” is ok when it’s referring to being diverse in ways that aren’t related to disorders or diseases. Like, I am really, really good with colors. I mean, I can organize, coordinate, identify, manipulate, and create colors in ways that I’ve found many people are impressed by. I believe my brain is really good at this for no reason. It is diverse but in a good way.

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Having autism is not good. Having severe anxiety is not good. Having OCD is not good. I’m almost certain most people would choose to not have any neurological condition, if given the chance. Parents would wish their child to be rid of all their struggles. Regular neuro-typical life is dang hard already – if we are given these extra problems to live with, let’s make sure we go about advocating for ourselves in the right direction.

Neurodiverse individuals can’t do everything. Even with accommodations, sometimes they will never be able to have total independence or success as defined by a group of people known as “the rest of the world.”

What to Take-Away from this freaking long blog post:

With all that said, the neurodiversity movement needs to propel itself forward with these three ideas in mind: Education, Acceptance, and Support.

People need to be educated about neurological differences in a way that is not demeaning or false. The media has tremendous power in their hands to educate people in a way that will challenge old and outdated perspectives without being the same story of a white, teenage, man with exceptional brain abilities but terrible social status.
The current neurodiversity movement is focused on acceptance, and it should continue to do so. However….
The movement is not focused on support, and without support for ND individuals, the first two points are basically worthless. We can educate the population, and accept people for the way they were born, but without support (financial, medical, therapeutic, emotional, etc.) there is little chance of success or normalcy for individuals who are deeply impacted by various disorders.

Being neurodiverse is ok; celebrating it as normal and insisting that life of neurodiverse individuals can be exactly like those neurotypical individuals is not ok. It’s so easy to ride the politically correct wave. It’s less easy to stand up and say, “Hey ya goons, this is not all sunshine and roses! Stop glamorizing and normalizing neurological disorders and start funding programs that will help people like me do basic life stuff.”

Peace xo

kelly

SPD Diagnosis in Adulthood

Here is a fun fact according to many medical professionals: children with sensory processing disorder grow out of their sensory issues, and become well-adapted teens and adults.

In a previous post I coined the phrase: people grow out of sweaters, not neurological conditions.
I know this is true because nearly every week I read about a new person realizing that they have had sensory issues since childhood and these same problems continue to plague them in adulthood. However, these adults struggle to find a doctor willing to help them.

So this leads me to my next conundrum. Due to the belief that SPD is a disorder of childhood – WHICH WE GENIUSES OF THE INTERNET KNOW TO BE NOT TRUE – another belief now exists that there are no adults suffering with SPD. I use the term suffering because I’m almost certain nobody that has this condition actually enjoys it.

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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

The Day I Learned I Couldn’t Dance

In other words, can my neurological condition take the blame for my lack of groove?

In a pathetic moment of hormonal-induced rage, my depressed, potato brain had created two options for itself:

1. run around and destroy local property and regret it later while in jail

2. find a sweet-ass dance video on youtube and dance my awful feelings into oblivion

Luckily for everyone, I selected option 2.

After throwing on some terrible pink shorts and a ugly maroon tank top, I was ready.

Youtube provided a wide array of follow-along workout videos. I decided to watch the one with the most attractive, happy, and successful looking people. If I danced with them, I could become them. That’s how it’s supposed to work, right? They were led by her:

Her name is Bipasha Basu; she’s a popular Indian actress with hair that flows and skin that glows.

At first, it was encouraging. All these attractive people dancing and exercising together to make themselves even more attractive. I too, was dancing with them. Bipahsa was talking to me; her incredible abs motivated me; her bronzed cleavage cheered me on.

It would be nice if my dance story ended here:

I danced into the sunset with Bipasha and the crew, as my mental health struggles melted away. Everyone was right – exercise does help!

Unfortunately, the story goes more like this:

Within approximately 7 minutes, I realized that I was not only struggling to dance along with Bipasha, but I was completely unable to dance at all.

As Bipasha and the rest of her gorgeous friends boogied effortlessly, I was unable to follow even the most basic dance instructions.

Literally, no exaggeration here:

To add to the incredibly low level of self worth I was experiencing, the dance moves became increasingly more difficult and soul-crushing – this one was referred to as the “sexy sway.” I’m not joking, look at the screen shot I took:

I can assure you there was no swaying and there was definitely no sexiness on my end. If I had dance moves, they would probably be:

My dog Sam sat silently nearby, judging me. (Also, what a hypocrite! As if Sam can dance better than me! What’s his best dance move you ask? Probably the “Fantastic Fart.”)

To add to the insanity, I danced in the privacy of my own bedroom, which is barely large enough to accommodate regular life activities, let alone dancing and dog lounging. Sam didn’t want to lay on my bed or in any surrounding area. No, he chose to sit right in the middle of my personal dance arena.

What can only be described as some freaky, alien-esque aerobics, the experience left both me and the dog in a state of hyper confusion.

Sam, not being the type to filter his facial expressions, or shower me with unconditional love as other dogs do, was clear about his opinion of me at the time.

My only saving grace was in the few moments during the workout where Bipasha and the gang would march in place. I’ll have you all know that marching in place happens to be one of my special talents.

As I marched in place (into the sunset), I became comfortable with the fact that I cannot dance along to any sort of choreography at this time. (It also occurred to me that I should probably see a neurologist because WTF something is WRONG.)

Maybe one day, when my brain decides to get with the program, I will join in the ranks of Bipasha’s aerobic dance team/squad/army. Until then, I will march on….in place, obviously.

xo kelly

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

Enough with the Fireworks

I’m here to declare July 4th as the worst Holiday ever. Columbus Day is a close second, by the way.

Don’t get me wrong internet friends, I support freedom and independence from the British empire. Our flag has lots of nice stars and stripes on it, and red, white and blue are a sweet color combination. That’s all very nice.

But July 4th is only known for one thing:

FIREWORKS

The concept of fireworks really irks me.

(And no, this is not because I have sensory processing disorder and fireworks are the bane of my existence, much like thunderstorms, barking dogs, escalators, and clothing tags to name a few.)

Shooting off fireworks on July 4th is awesomesauce for many people. Fireworks are colorful, big, and very loud, and I’ve learned that most people like colorful, big and very loud things. (My sensory-avoiding friends make a collective eye roll and groan here.)

Still, there are less – but still plenty – of people who dislike fireworks for various reasons.

Imagine this scenario: It’s National Blob Day, and everyone is celebrating. However, some people experience pain when people use blobs.

It really bothers me that even though many people are aware of the struggle and pain that this “holiday” brings for thousands of people – and animals – across the country, they insist on shooting off fireworks anyway. Because, you know, apparently their fun is more important than the mental and physical well being of their neighbors. Why is this ok?

It makes no sense to me.

July 4th makes a miserable experience for veterans, trauma victims, people with disabilities, elderly and young children who are frightened of sudden sound, and many animals. How is it fair, to the middle aged man with severe war trauma, to sit sobbing and delirious for hours because people want to celebrate? How is it fair to the child with autism, who cries and punches herself in the head because the sound of fireworks are so disturbing to her? How is it fair to the neighbor’s dogs, who run around whining and cowering for hours because people want to enjoy explosives?

I wouldn’t mind the fireworks so much, except for the fact that people in residential areas use them – many use them illegally, mind you. I understand that we live in a loud world where life is unfair and unkind to people whose bodies and minds deviate from the “norm,” whatever normal is. I understand that people want to celebrate and have fun, and that fireworks are traditional. But I simply can’t get past the anger I feel knowing that people continue to use explosives when so many suffer because of them. These people are not going to July 4th parties, and then getting upset over the fireworks. These are people in their own homes, not knowing where to go to escape the sound. I admit that I have considered driving to Canada for the weekend, in a desperate attempt to avoid this. There is literally nowhere to hide.

Imagine this other scenario:

Several of your neighbors are highly allergic to roses. The scent of them traveling through the air gives them a terrible, but non life-threatening allergic reaction. Still, every Spring, you argue that you have to plant all your roses because they make your house look nice and you really like to garden. Your neighbors will suffer for a while, but roses are SO PRETTY, so you do it anyway.

Any decent human must recognize that this is ridiculous, and quite frankly, bullying. But if we replace roses with fireworks, this suddenly becomes ok? Sadly, I know fireworks will always be part of this holiday, and there is little I can do to stop that.

This weekend, I will be on high-alert. I will put uncomfortable ear plugs in as the sun sets. I will sit close to my dog, his body wrapped tightly in his thundershirt; his one paw is picked up off the ground – he is nervous and upset. I will try to sleep through the storm of sudden and random explosions . My entire body jumps with each one, and my ears ache. It’s a long night, and the same will happen on Sunday. I know many, many others like me will wake up like this:

But at least some people out there are having fun, right?

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

Tina vs LSP

I’m unsure if this comparison exists already, but seeing as Tina Belcher from Bob’s Burgers and Lumpy Space Princess (LSP) from Adventure Time are two of my most beloved television characters of all time, I thought I would go ahead and make a blerg post about them. These two characters represent the epitome of the phrase, “always be true to yourself.” Through this comparison, I hope it becomes clear that they are fantastic models for morality, honesty, and integrity.

This is Tina Belcher:

She is the eldest daughter of Bob and Linda Belcher, and sister to Gene and Louise. Her family owns a restaurant, Bob’s Burgers.

This is Lumpy Space Princesss, more commonly known as, LSP:

LSP presumably lives in Lumpy Space with her parents. Although, she often runs away and spends time wandering all over the Land of Ooo (the main setting in Adventure Time).

The Tina Trinity: Boys, Zombies, and Unicorns

Tina loves boys, zombies, and unicorns; not always in that order.

(I love the swagger of zombies too, Tina. Me too.)

Tina’s most highly-prized boy is a young lad named Jimmy Junior, a fellow student at Wagstaff School. Although Tina is religiously devoted to Jimmy, she is especially dedicated to his butt.

Sadly for Tina, Jimmy is not as enthusiastic towards romance as she would like. Still, her fixation on him (and his butt cheeks) remains strong.

Boys, zombies, and unicorns all converge in Tina’s fan fiction – a notebook filled with her fantasy musings.

The LSP Trinity: Boys, Independence, and Physical Appearance

Much like Tina, LSP dedicates her time to hunting down “hot guys” to date and potentially marry. Unlike Tina, LSP’s priorities are unrealistically high.

Back in Lumpy Space, LSP does everything she can to gain independence from her parents, including living out in the wilderness with a can of beans, and joining a pack of wolves.

Like Tina, LSP enjoys writing and dreams of an exciting career as a famous novelist.

LSP’s biggest trait is her obsession with, well, herself. She has no filter, and is well-aware of her best features. There is no shame here, folks.

Being Real

Need a fresh dose of reality? Tina and LSP have got you covered. Whether it’s a reflection on their own lives or a reflection on the lives of others, they always know what to say.

In bad times:

They know what to say to make things right:

Fresh Attitude

Tina and LSP are fluent in the language of sass. This takes years of experience, persistence, and a ruthless mentality.

Be True to Yourself

Above all, Tina and LSP both possess the ability to remain true to who they are; individuality is of the utmost importance.

So here’s to you Tina Belcher – you strong, smart, sensual woman. You unicorn-fantasizing, boy-chasing, crap-attacking, zombie-butt cheek checking, adolescent.

And to you, LSP – you lumpy, trashy-novel, beauty queen, drama-bomb, fresh-to-death, honest-to-glob, princess.

(Angry LSP by Ricardo Perez Moreno)

Stay weird; stay awesome; stay you.

xo kelly

(note about images: with the exception of the first image before the title of this post, the rest of the images featured are not mine. They’re mostly screenshots from the two featured tv shows, and a few I’ve found using google. I’ve given credit to the images when I’ve found the source. If you happen to know the source of the uncredited images, please let me know in the comments, thanks!)

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

The Things I Need

The following blog blerg post is short writing piece I sent to The Mighty, a website that publishes short stories that empower the human spirit, specifically, human spirits with various disabilities or special needs. Anyone can send a story to this website, so I spent quite a while writing this little number below, as well as created two illustrations to go along with it. After all, who would I be if I didn’t include an awkward illustration in my blerg posts?

To my dismay, I received an email stating that this was not going to be published on their website, but they would be happy to receive other/different stories from me in the future.

Still, I wrote from the recesses of my shoul (yes, my shoul); I spent a lot of time working on this, and it would be wrong to keep it to myself knowing that someone out there might benefit from my words.

So I’m sharing it with you, dear reader:

The Things I Need

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

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

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

They were things I needed to feel.

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

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

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

Those are the things I don’t need.

So the question then became, how do I want people to make me feel?

The answers entered my mind quickly and randomly, in bursts, suddenly like bright fireworks against a dark sky: loved, supported, strong, independent, accepted, wanted.

I know now that the people in my life who I value like gold not only make me feel the things I do need to feel, but they erase the possibility that I could ever feel the things I don’t need to feel. Burdening, weak, dramatic, pathetic, incapable, or overwhelming; these are not options, ever.

I need someone to say to me, “Damn, this sucks. Let’s lay on the couch today and just talk and eat cupcakes.” I need medical professionals to treat me like a person, and not a number. I need honesty, laughter, and equal amounts optimism and pessimism (for when I don’t want to pretend to be happy and positive for five minutes, please). I need someone to hug me for no reason – and I mean, a real hug, not one of those crummy-half-pat-on-the-back-for-two-seconds hugs.

As one of my most beloved writers, Maya Angelou, stated, “At the end of the day, people won’t remember what you said or did, they will remember how you made them feel.”

xo Kelly

Eating Off Plastic

An illustrated blog about neurological misfortunes and some other things

aspergers

The Line We Toe with Neurodiversity

Where Things Get Icky

Neurodiversity on the Street

The Crux of the Matter

What to Take-Away from this freaking long blog post:

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.

Start from the Beginning

Find me an OT!

What now?

What to do if Kelly’s list didn’t work because it was too short:

The Day I Learned I Couldn’t Dance

In other words, can my neurological condition take the blame for my lack of groove?

Luckily for everyone, I selected option 2.

It would be nice if my dance story ended here:

I danced into the sunset with Bipasha and the crew, as my mental health struggles melted away. Everyone was right – exercise does help!

Unfortunately, the story goes more like this:

I can assure you there was no swaying and there was definitely no sexiness on my end. If I had dance moves, they would probably be:

What can only be described as some freaky, alien-esque aerobics, the experience left both me and the dog in a state of hyper confusion.

My only saving grace was in the few moments during the workout where Bipasha and the gang would march in place. I’ll have you all know that marching in place happens to be one of my special talents.

The Attic

How I thought it was:

How it really was:

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.

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.

The Big Band-Aid Calamity

Sensory Sea Turtle

Attention sensory human beans of the earth, and beyond:

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)

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.