neurological disabilities

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

SPD is not a “dubious diagnosis”

There I was, spending a quiet evening at home, munching diligently on some freshly-baked oatmeal cookies when my eyes scanned the internet headline “Why ‘Sensory Integration Disorder’ Is A Dubious Diagnosis.” The author of the article, Peter L. Heilbroner, MD, PhD, states that Sensory Processing Disorder (or Sensory Integration Disorder, as it’s also known) is not a real condition.

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As I began to violently shovel oatmeal cookies into my mouth, I read and re-read his article over and over. Below, I have written a counter-argument, because I believe Sensory Processing Disorder is real and those of us with SPD deserve advocacy. Since I am an adult with SPD, I will do the advocating!

 

His argument:

“Many children with autism have “sensory issues” such as oversensitivity to touch. Similar symptoms occur with other neurodevelopmental and behavioral problems (including attention-deficit/hyperactivity disorder) and anxiety disorders. However, the prevailing medical view is that “sensory symptoms” are a nonspecific indicator of neurodevelopmental immaturity rather than a distinct disorder. Such symptoms can also occur in children considered normal.”

My argument:

Yes, many children with autism do have sensory issues, as do children with various other neurological disorders. And yes, sensory issues can come about throughout early childhood as the brain is still developing and growing, and this is totally normal.

But, when children are struggling for long periods of time with basic sensory-related acts, it’s time to question whether or not that child is neurologically immature, or if there’s an actual problem with the child’s neurology that needs fixing.

 

His argument:

“Moreover, except in cases of autism, these sensory symptoms are virtually always outgrown. Do you know of any non-autistic adults with the type of “sensory problems” said to occur in SID? I work in the largest neurology group in my state. Although we see every conceivable neurological complaint, I have yet to hear from my colleagues of even one case of “SID” in an adult. In my experience, children who had been diagnosed with “SID” were overly anxious and come from a family that includes others who suffer from an anxiety disorder.”

My argument:

First thing’s first. Ok, I’ll admit it: those of us with SPD are usually very anxious people. But why are we so anxious? Oh yes, it’s because our sensory difficulties make ordinary life tasks difficult and anxiety producing. I know for myself, anxiety and sensory issues are two separate things, but SPD can make my anxiety worse, and anxiety can make my SPD worse. However, I rarely confuse the two – or smush them together as one – because their symptoms manifest very differently.

Second, just because you haven’t personally met an adult with a sensory disorder does not mean that these people do not exist. I’m telling you – there are thousands of adults with SPD, many of us are living with no diagnosis for various reasons. Some of us struggle so immensely with our SPD that we cannot live normal lives. Thanks to the internet, many adults have reached out for help and found support. They are startled to find that their symptoms are shockingly similar – not just regarding anxiety, but symptoms such as extremely poor coordination, or severe distress around bright lights, or the inability to wear certain fabrics, or feeling ill around certain odors. These people are not autistic, yet they suffer from severe sensory issues.

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His argument:

“Since few (if any) adult patients have SID, it is reasonable to question whether costly interventions are really necessary for what are most likely self-limiting problems of neurodevelopmental immaturity and anxiety.”

My argument:

Am I “neurodevelopmentally immature?” Gee, I hope not. I like to think of myself as “neurodevelopmentally unique or divergent.” The different wording makes it sound less like I’m to blame for my own neurological problems, and it gives me more hope that I can manage my life better.

Costly research and interventions have helped change the lives of millions of people with neurological disorders. Without research and treatment exploration, people living with conditions such as autism, epilepsy, PTSD and other disorders of the brain would still be receiving inappropriate treatment, or none at all.  Some of these conditions were completely misunderstood and stigmatized until science  – and humanity – caught up. I want the same to be said for Sensory Processing Disorder.

Here is a link to a recent study that found quantifiable differences in the brain structure of children with Sensory Processing Disorder. This is the first time science has found biological evidence of SPD:

Breakthrough Study Reveals Biological Basis for Sensory Processing Disorders in Kids

 

His bottomline:

“Most children develop and improve their behavior spontaneously. Since few (if any) adult patients have SID, it is reasonable to question whether costly interventions are really necessary for what are most likely self-limiting problems of neurodevelopmental immaturity and anxiety. Well-designed scientific studies are needed to determine whether or not SID is a definable disorder, and even if so, whether the treatments currently prescribed are effective or necessary. Until studies along these lines are conducted, the diagnosis of SID should prompt a healthy degree of skepticism. Working with a friendly and relaxed therapist can be calming to children. I believe that families with children with behavioral or anxiety disorders would be better off getting standard treatment than investing time and money in unproven approaches.”

My bottomline:

Don’t rush into investing time and money on treating sensory issues before you truly know if sensory issues are the problem. Anxiety treatment is not the same as sensory treatment, but treating anxiety can help a person with sensory issues. Visit an Occupational Therapist to see if what you’re experiencing is SPD or something else. It’s rarely a good idea to self-diagnose and treat. An OT will be able to provide a diagnosis and treatment plan specifically designed to help sort out sensory issues.

Most importantly, adults with Sensory Processing Disorder do exist, and SPD is definitely not a dubious diagnosis.

 

Here is the link to the article by Mr. Heilbroner if you wish to read it in full:  http://www.quackwatch.com/01QuackeryRelatedTopics/sid.html

What are your thoughts on this topic?

-Kelly

The Real Restroom Dilemma

Last summer, Momsy and I attended an Arts and Crafts Fair. After bopping around from one crafter to the next, we needed a bathroom pit stop. Luckily for us, there were actual bathrooms at this fair – not a porta potty in sight. Unfortunately for me, those bathrooms were very noisy, and included my least favorite thing ever: air-powered hand dryers.

At the bathroom building, I informed Momsy that I did not, in fact, have to pee.

I lied.

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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.”

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?

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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).

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.

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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:

morning after july 4

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.

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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:

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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.

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

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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.

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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.

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xo kelly