sensory integration disorder

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 TRUEanother 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.

love having spd

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:

  1. 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.
  2. 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):

  1. Go to a library, bookstore, or Amazon.com and get the following books: 
    1. Making Sense: A Guide to Sensory Issues by Rachel S. Schneider
    2. The Out-of-Sync Child Grows Up by Carol Kranowitz
    3. Uptight and Off Center: How Sensory Processing Disorder Throws Adults Off Balance and How to Create Stability by Sharon Heller
    4. Too Loud, Too Bright, Too Fast, Too Tight: What to Do If You Are Sensory Defensive in an Overstimulating World by Sharon Heller
  2. 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.
  3. 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.
  4. 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

 

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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.

cookies yay

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.

hello hi im here

 

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.

i lied

Was my bladder going to explode if the internal pressure was not released at that very moment? Probs not. But there was no way I was going into the noisy restroom.

I waited patiently outside for Momsy, watching women join the long line for the restrooms, then watching them exit after several minutes. The roar of the hand dryers, women talking, and the toilets flushing collided with the quieter sounds of the world outside as I stood baking in the bright sun, like a cookie.

Walking past me came a woman pushing another woman in a wheelchair. The woman in the wheelchair was missing her one leg below her knee. The pair were heading towards the restroom line.

Suddenly, a young volunteer working at the fair asked the woman, “are you headed to the bathrooms?

The woman in the wheelchair replied, “yes.”

The volunteer said, “oh, come this way, this the employee bathroom, but you can use it.”

The two women thanked her casually and followed her past a security gate and into another small building.

That moment resonated with me. The woman in the wheelchair was clearly disabled – anyone could see both the wheelchair and the fact that half her leg was not there. The volunteer did the right thing by trying to make life easier for her by accommodating her needs and allowing her to use a separate, less crowded bathroom.

I began to imagine if I had asked that same volunteer if I could also use the private bathroom. I envisioned myself explaining – in my awkward-while-trying-to-be-confident manner –  about my sensory processing disorder, and how the normal bathrooms were very uncomfortable – in this case, impossible – for me to use.

I could see her making that “ehhh” face, the one where she isn’t buying it, but she doesn’t want to look like an absolute idiot either. She responds with something along the lines of “well, you see, that bathroom is for employees only. I’m sorry but I don’t really work here. I’m just a volunteer, and I don’t think it would be allowed.”

the ehh face

If I was a true badass of disability equality and advocacy, I might say something along the lines of, “But I noticed you allowed that other disabled woman to use that restroom. I was hoping I could also be accommodated because of my special needs.”

Next, perhaps, she would create some kind of excuse for her decision, like “I allowed that woman to use the other restroom because her wheelchair would be too big for the regular restroom.”

OrI didn’t want her to have to wait on the long line.”

Or maybe even, “She is in a wheelchair so she has a disability. You are clearly a fully-functioning person because I cannot see any visible sign of a problem. So you cannot use the other bathroom because you are a liar and you are trying to mooch the system. SHAME….SHAAAAAAMMEE.”

Was there a small chance that this volunteer would allow me to use the private restroom after I politely explained my situation? Of course. But that small chance was probably very, very small. And for some reason, I would end up feeling guilty asking for this accommodation in the first place.

The whole moment made me think about every person with an invisible illness or disability or condition. Our lives are spent trying to make the best of a world that doesn’t seem too eager to accommodate our particular needs. Whether those needs are closer parking spaces, equal treatment in school or at work, or the need to use a different restroom when one is available.

As a teenager, I used to wear brightly colored earplugs to visually remind those around me about my condition (aside from using them for hearing protection, too). Without them, I’m certain most people would have completely forgotten about my severe sensitivity to sound and things would have been more miserable then they already were. I used to jokingly tell Momsy that I wished I was in a wheelchair because maybe then people would respect and understand my needs once they saw a visual sign of a problem. How sad is that?

Would it be tacky of me to walk around with a massive sign drapped over my shoulders, reading: PERSON WITH NEUROLOGICAL CONDITION. MAY REQUIRE SPECIAL SERVICES?

perosn with condition

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?”

tps

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

Successful Mall Girl is Successful

Once upon a time, like last week, I went to the mall to do some shopping. 

(All of my SPD friends can get up off the floor now, as I’m certain all of you must have fallen out of your chairs with the sentence you just read).

But fear not, bloggy friends! Not only did I go to the mall, but I went BY MYSELF, and….

I LIVED TO BLOG ABOUT IT.

Is this a miracle? You could say that.

Is this a product of my fearless badassery and warrior-like approach to my entire life? Mostly.

Is this a freaky incident that I tried to savor as much as possible because it was so unbelievable. Yes.

 

Ladies and Gentlemen, it is time to recollect my astounding mall experience.

First, I had to make it through the parking lot. An SPD’er in a parking lot is usually a recipe for disaster. One horn, one beep – we are done. When I strolled through the lot, bracing myself against the painful NY coldness, I was like prey being hunted by my predator. Yet as I passed car after car, nothing happened. I hauled open the heavy doors of Dick’s Sporting Goods and threw myself inside. Awesomesauce, I thought.

Once inside, I tried to pretend like I was a very capable young woman on a shopping adventure. I also knew it was important for an SPD’er such as myself to review my body awareness – am I walking straight? Do I look like I’m dying? Do I appear as if I’m in need of psychiatric help? If YES, then it’s time to find the nearest exit. It’s a simple evaluation process:

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Luckily, I was fine. Everything checked out.

Being inside the mall is one thing, but then you must have to deal with the specific environment of each store WTIHIN the mall. I began my journey at the ever-sexy Victoria’s Secret.

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I was anxious. What if something happened inside? I was alone! Also, oh yea, I HAVE SPD.

Amazingly, the only bad thing that happened inside Victoria’s Secret was a shattered sense of self-esteem and general uncomfortableness.

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After Victoria’s Secret, I did everything that a good little SPD human was supposed to do. I avoided candle stores. I stayed away from the food court. I dodged screaming children. However, I did do something bad….

I WENT INTO HOT TOPIC.

For those of you who don’t know, Hot Topic is a scary-looking store on the outside with lots of interesting things on the inside: Harry Potter, Frozen, Walking Dead, Disney Princesses, Adventure Time, music, earrings, magic, delight, etc.

The music in Hot Topic usually is overwhelmingly loud and as much as I love the merchandise, this place kills my SPD.

BUT AGAIN, I MARCHED OUT COMPLETELY UNTOUCHED. ANOTHER MIRACLE.

What’s happening??! I thought to myself. I should do MORE stuff!

So what did I do?

I GOT A PRETZEL AND SOME LEMONADE.

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I sat on a bench, enjoyed my salty pretzel and sweet lemonade. I chuckled at the funny array of people, myself included. I felt so blessed to be doing all of it. At the same time, I remained vigilant for my top enemy.

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I somehow managed to survive the encounter, so I kept going.

Through Hallmark, Macy’s, and the cheesy leather goods emporium, I frollicked like the very normal shopper that I was so desperately trying to be.

It was surreal; it was exciting; and dare I say, enjoyable?

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THE FINALE

One of my greatest foes in life has to be escalators. In fact, the very first post I made on this blog was about escalators. This is the level of seriousness I’m talking about here.

Due to my perfect record so far that day, in addition to my overwhelming desire to be a complete BEAST, I marched towards the great escalators, and then I stood before them as one would do if they were about to destroy their enemy.

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Escalator was all like:

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And I was all like:

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AND THEN I WAS LIKE:

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Then it was over.

No traumatic escalator experience. I mean, I held on for dear life and looked so awkward that I could’ve out-awkwarded anyone in a 10 mile radius. BUT WHO CARES….I DID IT.

While it wasn’t a perfect time at the mall, it also wasn’t a complete disaster. More importantly, I went ALONE. I had nobody to fall back on if necessary, but I did it anyway. The successfulness of this day was in the very fact that I conquered my anxieties by going to the mall by myself while experiencing anxiety, and being ok with the unease.

I’m not sure why the sensory gods blessed me with a nice trip to the mall, but they did. I left on Cloud 9, wherever that is. Probably near here:

Picture 42

 

xo kelly

Also, I was only there for about 2 hours. This post makes it sound like I was there for 10 hours. Just wanted to let you all know…I’m pretty beast, but I’m not 10 hours beast.

 

Food Shopping Part 2: Big Decisions

I recently had another ridiculous food shopping experience. Afterward, I realized it would make an absolutely marvelous blog post. So ladies and gents, here we go:

After shopping with momsy for what seemed like several hours in preparation for a BBQ, we finally reach the frozen food aisle in the grocery store. We decided to pick a frozen meal to have for lunch because:

a. We never have frozen meals, therefor it would be different and exciting

b. We were tired and hungry and the frozen food is for the lazy.

Momsy quickly selects her frozen lunch. Some chicken pot pie thinger-whatever. Good for her, I thought to myself. Now it was my turn.

Let me remind everyone that again, this was the END of long day of shopping all over town, and if you have read my first post about food shopping (click here to read it) you will remember that food shopping can be a somewhat very extreme sensory nightmare.

So there I was, surrounded by freezers with dozens, if not HUNDREDS of options for what to have for lunch. I was overstimulated, COLD, tired, and very hungry.

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I had to make a decision.

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The task at hand was not really complicated: Choose a frozen meal to have for lunch. But it felt so much more intense:

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(If you’re interested, the choices on the wheel are: lava, darkness, sword, chocolate, sharks, ice, puppies, poo, spider, knife, water, snow, fire, bugs, snakes, and bieber…whose name I spelled incorrectly. Go me).

Neurotypical people, like momsy, for instance, make decisions based on the fact that their brain does not struggle to process sensory information. All that comes naturally, so when they are in an overstimulating environment, their brain can focus on important decisions….like what to have for lunch.

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Then there are people like me, whose SPD brain – when pushed to the brink – experiences difficulty when having to process anything other than sensory info because it’s so darn busy trying to process basic sensory info that it LITERALLY doesn’t have time for anything else. My brain was like:

aint-nobody-got-time-for-that

When deciding on what frozen thing I wanted, my brain would only respond by stating what it could process at the time:

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GENIUS. UGHHHH

I remember standing in the aisle, pacing back and forth in front of the freezers and nothing was making sense. It felt like forever.

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I couldn’t stand myself! How could I have possible graduated with honors from my university just months ago, yet I couldn’t pick a frozen lunch from a freezer? WTF, you guys. To hell with my SPD brain, I was hungry and incapable!

Luckily, my lady in waiting, momsy, was there and she recognized that I was overstimulated.

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(Note: someone please make this frozen meal a reality. I don’t know about you, but I would buy Mr. Miyagi’s Kung Pow In Your Face Super Asian Noodles with SAUCE.)

And with that, all was ok. My brain accepted this box of asian cuisine and I was thankful that my decision making nightmare was over. I realized I had pushed myself too much all day, and my frozen meal meltdown – a seemingly random event –  was actually the product of too much overstimulation. I WAS SO OVERSTIMULATED THAT I COULDN’T RECOGNIZE THAT I WAS OVERSTIMULATED. Oh the irony!

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xo kelly

What School Is Like For The Sensory Sensitive

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

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earth dies screaming 3

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screaming-rabbit

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

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

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

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

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

gangsallhere

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

This pattern continued for like, ever.

I had my reasons….

Meanwhile on the school bus:

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

Meanwhile, in the classroom:

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

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

Meanwhile, in the cafeteria:

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

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

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

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

The idiots from preschool were basically the same:

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I began to think things:

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

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

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

xo kelly

Highly Sensitive Person vs Sensory Processing Disorder

I’ve been basically dying to make this post for a long time:Picture 34

See, I told ya.

The more I read online about Sensory Processing Disorder (SPD), and the somewhat related, Highly Sensitive Person (HSP) concept, the more I needed to explain the distinction between the two. I’m finding that people are diagnosed with (or more frequently, diagnosing themselves) with SPD, when really, they are more HSP.

So let’s begin by identifying what these two things are:

1. SPD, aka Sensory Processing Disorder (which I write about for pretty much every post) is a neurological problem where the brain’s sensory system does not function correctly. Meaning, when you perceive something in the form of sensory info, the brain is all “WTF.”

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SPD involves your SENSES, your vestibular system, proprioception, motor control, balance, and spatial awareness. There is a dysfunction in the actual processing of sensory information.

 

2. HSP, aka Highly Sensitive Person, is a “character trait” created by Dr. Elaine Aron. As much as 20% of the population, she believes, has this trait which makes them a highly sensitive type of person. What does this mean though?

HSP’s are very in-tune with their environment. They are overwhelmed by the world in general, specifically emotional situations, and they often struggle to watch or read violent/upsetting things. They are considered shy, quiet, introverted, and anti-social. They are deeply moved by music, art, nature, and all things beautiful.

Here’s the important part: HSP’s also have a problem with sensory info, as it can overwhelm them. They can be sensitive to noise, light, touch, taste, etc. They can become overstimulated and need to withdraw from the world to recoup.

This trait for sensitivity is so closely related to Sensory Processing Disorder, that Dr. Aron also refers to HSP as SENSORY PROCESSING SENSITIVITY. 

Good grief! Now you can see why Sensory Processing Disorder and Highly Sensitive Person are often confused.

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Here is – what I believe to be – the difference:

I think Highly Sensitive People DO NOT have issues with balance, motor control, or body-spatial awareness. Their sensitivities are usually less, but more specific, meaning, they might be sensitive to a certain type of food, or a certain texture of clothes. The bulk of their sensitivities are more abstract, emotional sensitivities.

Their sensory system is probably not dysfunctional, rather, their brains are in a constant state of hyper-awareness and the world can become all too much…all the time. They are sensitive.

If a person is deeply disturbed by emotionally charged situations, or too much socializing, or being in a crowded room, I do not believe they have SPD. They are a HSP.

—————————————-

To make things more confusing, people can be BOTH SPD and HSP. I know this because I am both.

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Now you’re thinking “Kelly, you’re crazy. You’re a crazy girl.”

And I’m like: “yea. YEA I AM.”

It’s ok to be both. I have both, and I’m decently ok.

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I have learned to separate  what I’m feeling and experiencing with SPD and HSP. I know the bulk of my overstimulation is SPD, and I know the sensations I feel that are a result of too much sensory junk because I feel spacey and unbalanced. I need to do my sensory exercises and sleep it off. This is SPD.

I also know when I am overwhelmed and upset by other things, like being around an angry person. I am overwhelmed by their intensity and I cannot separate myself from them emotionally. I need to get away from them and distract myself, or their emotions will make me ill. This is HSP.

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What bothers me, and what I feel is not ok, is to assume a diagnosis of SPD when really, you’re just:

“I’m don’t like arguing or the smell of mustard. Country music makes me angry. I am introverted. I have SPD.” No, bro. You are probably a highly sensitive person.

“Loud noises make me cry, as do sudden bright lights, and I can’t spend more than an hour in the supermarket because I feel spacey and floaty. I don’t like to wear any clothes because they all make me want to crawl out of my skin, and I’m always bumping into things like a drunk weirdo. I have SPD.” Yes, bro. YOU PROBABLY DO.

Moral of the post: If you feel like you have Sensory Processing Disorder, GO TO AN OCCUPATIONAL THERAPIST. Get yourself a proper diagnosis. BUT, before you do so, look into Highly Sensitive Person traits, and perhaps you will find that you are more of an HSP and not SPD. It will save you a lot of trouble (and money). SPD is a disorder, HSP is a sensitivity/trait.

Here is the website for Highly Sensitive Person info: hsperson.com

As usual, feel free to post comments/discussion/ sappy love messages in a reply to this post.

Peace Out homies xoxo

kelly

 

 

 

 

Partying with SPD

Ask any person with sensory issues about how much they like going to parties.

Oh wait, you don’t have to, I’ll tell you for them. They don’t like it.

Large social gatherings are basically the OPPOSITE of the bees knees for SPDers (well, like 98% of us).

I was at a family/friends party recently. There were about 25 people there of various ages. I spent a lot of my time outside (because outside is usually better than inside because sound has no walls to bounce off of).

But then I came inside….for cake. Everyone was watching the world cup on the tv.

Of course, having impeccable timing like I always do, one of the teams scored a goal at that exact moment, and the house erupted in a roar of whoops and clapping. One of the party goers was clapping so forcefully that I felt as if he was slapping the side of my face with a piece of plywood. Oh yes, it was fun.

That was all I needed. I froze as my sensory system tried to understand what the heck just happened.

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Things went downhill quickly. Thankfully, my mom was nearby and witnessed the trauma as it unfolded. She quickly removed me from the scene:

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Meanwhile, my body moved zombie-like alongside her, unable to really process much of anything. Amazingly, I did not cry. AS usual, my body deals with trauma by zoning out, crying, and/or going full t-rex (which you can read about HERE). This time, however, I just zoned out.

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Mom and I had to then walk down a very steep hill to get away from the noisy, chaotic house party. As we walked, she joked about when my t-rex arms would appear. So I started making dinosaur noises and humming the theme song to Jurassic Park.

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It was all fun and games until we had to go from steep hill to steeper driveway. Mom was in heels, and it wasn’t pretty:

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MIRACULOUSLY, we made it down to the street where we found a nice little path to walk on….a flat path.

The combination of the air, walking, and having my mom to support me (no really, she was actually holding me upright) started to make me feel less like I was going to die. She started verbally bashing people, parties, society, etc…and it was funny.

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Even when we came across a barking dog, and I wanted to destroy him forever,  mom didn’t miss a beat:

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(NOTE: I would never wish a dog to die, but when I’m overstimulated, I can’t tolerate anything and become a vicious beast).

As we made our way back to the party, I decided to sit on the front porch steps and mom said she was going to bring me some cake. She said it would make me feel better. She came out holding what appeared to be the majority of the whole cake squished onto a little paper plate:

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Of course, she was right. I felt so much better after eating all that ice cream cake. Food for the SPD soul. This post wouldn’t be complete without mentioning that the cake had blue icing on it that stained our teeth bright blue, so we both looked like this:

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So that’s my party story.

Moral of today’s post: If you’re going to a party, especially where there will be loud, obnoxious people who will unknowingly destroy your will to live, make sure you bring a SPD friend or caretaker, such as MOM, who can carry out to safety and give you large pieces of cake.

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Thanks, Mom.

xoxo kelly

World’s Best Coper

To cope.

According to the dictionary, the word cope generally means to successfully deal with or handle something that is difficult. Another dictionary refers to it as overcoming problems and difficulties.

While I’m not sure how successful I am, I’ve developed decent ways of coping with my severe sensory problems. I am a good coper…sometimes.

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People cope in their own way. People with sensory problems like myself have to resort to coping in strange ways. Let’s explore some of those ways in which people with sensory problems cope:

1. DEEP PRESSURE

Those of us with wacky sensory junk have a strange affliction for the sensation of touch. We hate it. We love it. If you’re like me, you can’t stand light touches, but love deep pressure. To fulfill my need for sensory stability, I need a buddy. Usually my sister, the helpless victim to my needs:

sitonme1

sitonme2

Ahh, sisterly bonding at its finest.

2. WALKING/RUNNING

Another great way to soothe sensory-related anxiety is to go for a walk or run. The feeling of your feet on the ground can be very stabilizing. But be careful, sometimes walking when overstimulated can leave you dizzy and freaky-looking (see my post about turning into a T-REX).

As I was saying, walking and running can be great.

Unless you are a weirdo like me, and since toddlerhood have been pacing for hours in confined spaces, like a bathroom.

pace right

pace left

INITIATE LAUNCH SEQUENCE. TURBO ENGINES….GOOO!

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Fun Fact: I still do this all the time. Also, I’m still single. AMAZING, I know.

3. ROCKING CHAIR-ING

On the 8th day, God made the rocking chair, so people with sensory problems can experience its glory and power. That day, praises for the chair were sung by all the angels…..all five of them. They sang really loud to compensate for the lack of angels:

angel rocker

The rocking chair and I fell in deep, disgusting love. Cheesy one-liners starting appearing:

love rocker

The movement of being in a rocking chair is so wonderful – so calming to my sensory system – I feel as if I’m being transported through space, through time even! It’s like the twilight zone, except, it’s not. It’s just me in a chair.

space rocker

Then something like this happens:

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4. BICYCLE RIDING

So this one may not be for everyone. But this works for me….and this is my blog. So there.

I very much enjoy bike riding. The combo of using my legs to push the pedals and using my arms to hold and steer myself provides great relief when I’m overstimulated. I would ride my bike more often, except I live in a fairly rural area of New York. I can’t ride without fear of this happening:

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5. BRUSHING

I’ve mentioned brushing in a previous post (Occupational Therapy Adventure). Sensory brushes are great as they provide deep pressure to numerous parts of the body. I like the consistency that brushing provides, and I also like that I can control it myself. What person with SPD doesn’t love control, AM I RIGHT?

The only strange part about using brushing to cope with sensory issues is that it can be rather odd to tell someone about. For instance:

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And that’s how the cookie crumbles. I have many other less boring but still strange ways of coping with my SPD, as I’m sure many of you do as well, but I’m going to end it here. Moral of today’s post: if a Hollister model dressed in a fancy suit wants to take you out for a nice dinner date, don’t tell him you have to brush yourself for 40 minutes (even if you DO). This has never happened to me, but when it does, I will be ready. I will be PRE-BRUSHED.

xo kelly

I AM THE T-REX

So there’s this funny thing that happens to me when I experience sensory overload. Apparently I’ve had it for quite some time now, but I’ve only just given it a name and I’m working on stopping it. Sort of.

I call it, T-REX. It sounds way cooler than it actually is.

When I am over-stimulated, I struggle with what’s called proprioception. This is the ability to be aware of my own body movements and my spatial orientation, or position of my body and limbs.  In other words, it’s the ability of me knowing where my body is and what it’s doing. People with sensory difficulties may struggle with proprioception, although it’s not usually discussed because it’s not something general (like sound, touch, taste, etc).

In any case, when I experience this, my body and brain attempt to fix my sensory issues on their own and it doesn’t always work out so well for them.

It’s like when your husband says to you, “Honey, I’ll fix that leaking faucet even though I’ve never done so before but I totally can do it anyway.” The next thing you know, the faucet has exploded and there’s two inches of water in your home. Your husband put some duct tape around it and it’s “good enough I guess.” It has stopped leaking, but it’s certainly not fixed.

When my brain and body are over-run with sensory junk and they fail to fix it, they use their own version of duct tape. My brain tells my body to contort into the position of your average, everyday tyrannosaurus rex. It looks a little something like this:

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Not only is this embarrassing, but I have no awareness of doing it. When I try to change my position, it’s extremely difficult if not, impossible. The T-rex pose is the only way my body and brain have decided to put a temporary fix on a problem they cannot seem to solve. I can only assume this pose comes from my brain trying to find balance.

When my mom and I are out together and she sees me doing this, she whisper/yells “T-REX. T-REX. T-REX.”

My mom then suggests that I try to change my arm position into a more normal-looking one. She says, “swing your arms!” But my arms refuse to. Instead, they swing in unison and I look even worse. It gets me weird looks and small children cry at the sight of it.

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When all else fails, I must embrace it. I become the T-Rex, I AM THE T-REX.

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xoxo kelly