Sensory integration dysfunction

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.

  1. 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.
  2. The current neurodiversity movement is focused on acceptance, and it should continue to do so. However….
  3. 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

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Marcus and the Club

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

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

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

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

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

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

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

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I was all like:

WTF-face

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

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Without missing a beat, he fired right back.

“YOU SHOULD COME CLUBBIN’ TONIGHT!”

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

Luckily for me, Marcus was a real charmer.

“But, sugar, you should come tonight.”

I tried politely turning down his offer.

“No thank you,” I said again.

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

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KILL ME NOW.

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

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Marcus stared at me with silence and uncertainty.

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

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*pause*

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

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

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

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

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

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

 

xo kelly

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

 

 

 

 

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What the heck is Sensory Processing Disorder?

What the heck is Sensory Processing Disorder (SPD)? Also called Sensory Integration Disorder, or, as I call it, “My brain hurts from all the noises and lights and junk. I can’t function or anything, so I’m just gonna go to bed.”

I have found that nobody knows what SPD is, or just how deeply it can impact a person’s life. So darn it all! I’m making a post about it.

First, what the heck is sensory processing?

All of our senses are processed through our nervous system. That is, information is collected by our senses and sent to the brain where it is processed and sorted. Once this is done, your brain tells you how to respond to that information.

Second, what the heck is sensory processing disorder?

The disorder part comes into play when the act of sensory processing goes haywire. The sensory information gathered by the nervous system is not correctly interpreted by the brain, which results in numerous symptoms and behaviors.

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What happens then?

Well my friends, if your brain does not know how to understand the information that it is being fed, you’d better believe that your response to it will also be quite messed up.

For people with sensory disorders, the resulting behaviors from a malfunctioning sensory system can vary tremendously. For some, they turn-inward and become still and quiet. For others, they lash out and have a loud, head-banging, arm-flailing meltdown.

Personally, my body shuts-down. I cannot talk (or make sense when I do speak), or walk straight. I am disoriented, irritable, crying, and feeling completely detached and ill. The environment becomes simply too much to process, so my brain tells me to just turn off for a while.

What’s it like living in a sensory world?

As you can imagine, living with SPD is, shall we say, challenging. All aspects of living on planet Earth require that you have a functioning sensory system. This is especially true in Westernized societies where sensory stimulation is considered fun and enjoyable. Of course, it becomes less fun and less enjoyable when your brain cannot process sensory signals the way they should. The world becomes unexpected, chaotic, frightening, and confusing. Basic aspects of life such as taking a shower, cooking dinner, seeing friends, working, going to school, watching television, or eating become a battle.

Imagine showering if the feeling of water dripping on you made you want to run for your life, or the water temperature feels painfully cold for you, but to everyone else and their brother, it feels fine.

Imagine going to school where the bus is bumpy and the radio is painfully loud, and the seats are shiny and feel different and ugly on your skin. The children are noisy and they move fast, and the teacher gives you white paper that hurts your eyes to look at. Your hand won’t hold the pencil, and the lines and words are jumping and moving. In gym, you are terrified of climbing the cargo net but you love crashing yourself into the blue cushy mats. In art, the thought of finger-painting makes you cry, but you love cutting paper or looking at shiny scissors.

Imagine you can’t get a job because the store has fluorescent lights and the customers are loud, and have screaming children. Your job requires you complete tasks for countless hours in a sensory-filled environment. Your clothes are itchy and too tight. The feeling of denim or fleece is awful, but you have to wear it. There’s a tag in the shirt that makes you want to scream.

Imagine you try to eat dinner but the smell of food makes you gag, and the feeling of the food in your mouth is unbearable. But you love to touch it with your fingers because your body tells you that that makes more sense, and it doesn’t hurt.

WHAT I’VE LEARNED…

Here I am now, age 22. My sensory disorder still plagues my life. When I reached my teen years, I found that therapy to help me cope with this disorder was virtually non-existent. They assumed that because I was 13 years old, I was able to do all the therapy on my own. I find this disturbing. It’s not like sensory problems go away. They can be managed and treated, but as of right now, this problem is not curable.

Even worse is the fact that the majority of people – both the general public and professionals – are either blissfully unaware of sensory disorders, or they don’t believe in them at all. Yes, you heard me. Many “professionals” do not think sensory problems exist.

When I ask people if they know about SPD, they respond either “no,” or the conversation goes like this:

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Yeah like karate. UGH. BOW TO YOUR SENSEI.

SOME MORE THINGS I’VE LEARNED…

SPD is unrecognized in many people, aka: loads of people living with this disorder go undiagnosed. These people – young and old – have struggled their entire lives being deeply impacted by the challenges of living with sensory issues. I also feel that the sensory components in autism are severely neglected. In fact, I believe sensory problems are a huge factor in autism and the reason why autistic people behave the way they do. Autism is not just about communication problems.

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People generally don’t know much about autism (like the gentlemen in the illustration above) even though a huge number of the population live with this neurological disorder.

When researching autism, I found hardly any information about the connection to sensory problems. Everything was focused on communication and social skills. I recently read Temple Grandin’s newest book The Autistic Brain: Thinking Across the Spectrum. I was delighted to FINALLY see that she too noticed a huge lack of discussion about sensory problems in autistic people. Temple Grandin, you stole my hypothesis!!

I believe autistic behaviors stem from sensory overload (or under-load). Meaning, autistic people behave the way they do (social problems, little to no communication, meltdown, stimming, detachment/zoning out, need for routine, etc) as a way for their mind/body to cope with the sensory processing malfunction.

THIS, I feel is the most neglected part of autism, and it is neglected because sensory processing disorders are neglected across the board.

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Any thoughts/comments on SPD or related issues, leave a reply below. I love to see feedback or discussion! 🙂

xoxo kelly