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

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MAKING SENSE: THE BOOK

Ladies and Gentlemen,

Alien lifeforms and deep sea creatures,

Beings of Middle Earth, Narnia, and Neverland,

 

TODAY, FEBRURARY 15TH, my pal Rachel S. Schneider of Coming To My Senses has released her book, Making Sense: A Guide To Sensory Issues

rachels book feb15

Why is this important? I know you’re a busy human, so let me list the reasons:

  • Rachel – a late-diagnosis SPD’er – is a major advocate for those of us with sensory issues (as well as a bucket of other issues) and has helped hundreds, if not more people through her websites rachel-schneider.com and Coming To My Senses. She also created a Facebook adult support group for SPD adults, which now boasts over 1,400 members.
  • She has worked tirelessly through her own sensory issues to write a book to help others with the exact same problem. I know the extent of her efforts because she sent me rough drafts and such throughout the entire process.
  • Rachel is a compassionate little maniac who has made it her mission to see to it that Sensory Processing Disorder is given the recognition it needs.
  • Although aimed at adults, this books will give insight to those of every age with and without sensory issues.
  • OH, AND I AM THE ILLUSTRATOR OF THIS BOOK.

omg yas

Who is this book for?

  • humans
  • humans with large brains, especially those who wish to expand their brain size
  • you

Who is the book NOT for?

  • humans who do not wish to gain any knowledge and remain fartfaces forever
  • dogs, because they generally do not read books (Note: this book may be read to dogs, by their humans.)

Here is an exclusive illustration from the book. Can you guess where this idea came from?

i see sensory people

Order your copy today from:

rachel-schneider.com

Amazon.com

Barnes&Noble.com

All the above links bring you directly to the book’s page. You’re welcome.

 

xoxoxoxo kelly

 

 

The Day I Learned I Couldn’t Dance

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

 

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

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

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

Luckily for everyone, I selected option 2.

 

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

lord of the dance

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

hot workout 1

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

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

 

It would be nice if my dance story ended here:

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

 

Unfortunately, the story goes more like this:

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

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

Literally, no exaggeration here:

me vs bipasha

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

sexy sway oh god 2

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

trex dance

SULTRY STUBBED TOE

ANXIETY

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

JUDGING YOU

 

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

places to sit

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

wave those arms!

 

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

what the crap

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

march workout 2

so good at marching

 

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

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

xo kelly

 

 

 

 

 

 

 

 

 

 

The 5 Lies We’ve Been Told About Group Projects

I’m writing this post to vent some sort of lingering resentment and rage that resides deep within me from my days of doing group projects at school.

As far back as I’m sure most of us can remember, school often involved working with other students. Hell hath no fury like a group project.

group projects 1

Chances are, if you’re reading this, you were like me – you found that you were the person in the group who did all the work. The other group members were, basically, incompetent hyenas. (By the way, I would’ve rather worked with a group of incompetent hyenas than most of the people I was forced to work with.)

Teachers would revert to the same lengthy explanation of why exactly we were working in groups. It was always the same, and can be summarized with 5 main points:

1. Group work allows students to build communication skills.

2. Group work teaches students to delegate responsibilities and create trust.

3. Group work demonstrates the value of diverse ideas.

4. Group work forces students to learn time management.

5. Group work shows students that five heads are better than one.

You probably know what I’m going to say….

The previous five points are all utter crapsauce, in my most humble opinion. We have been fed lies I tell you, lies. Without further ado, allow me to break this down, point by point, so we all can gain a clearer understanding of why the 5 points supporting group work are really 5 points supporting slow mental collapse.

1. Group work allows students to build communication skills.

When you work in a group, you first pray that the other groupies are sane members of the human race. If they are not, there will be no “building communication skills.” In fact, there will be little communication at all. After approximately 20 minutes of group work, you will realize that your communication skills have slowly deteriorated.

group projects 2

*5 minutes later*

group projects 3

*5 minutes later*

group projects 4

2. Group work teaches students to delegate responsibilities and create trust.

What a joke. Students know that “delegate responsibilities” is code for “split up the work and hope that everyone does they’re part or the entire group is screwed.” If you know that some members of your group are not responsible students, why on this great earth would you give THEM the responsibility of a project for which YOU will be graded? I can only be responsible for myself. (I refuse to be held accountable for Jimmy, because he doesn’t give a flying crap about destroying the whole group by being an inept hyena).

group projects 5

As for trust, in a group project, there is none. (The only exception to this is when you remembered that that one student in your group did a group project with you two years ago in a history class, and they demonstrated they were not an inept hyena back then, therefore, they are probably still trustworthy, and you make them your secret group ally).

If you KNOW that a person in your group is not a responsible person, why should you trust them? Again, I can only be responsible for myself, so in the end, I can only trust myself. The responsibility/trust thing kind of go together….a lot.

3. Group work demonstrates the value of diverse ideas.

Most of the time, I value diverse ideas. New perspectives, innovative techniques, thought-provoking discussion; sounds marvelous, wouldn’t you agree?

I’m going to be a terrible person right now: I value diverse ideas in a group project as long as those ideas do not come from an inept hyena. When they do, they drag the entire group down into pit from which none return; a pit of inept hyenas.

group projects 6

4. Group work forces students to learn time management.

I’m sensing a repeating theme here: I can only be responsible for myself, trust myself, and be aware of my own time management skills. I cannot – and should not – have to be responsible for Jimmy the Inept Hyena and his time management skills, or lack of.

You can hear the low groaning of students as they struggle to arrange their insane schedules to work with five different people – each with their own insane schedule – on a project.

group projects 8

group projects 7

group projects9

5. Group work shows students that five heads are better than one.

Point number five contains the largest amount of crapsauce. Clearly, five heads are only good if the five heads have known each other for a long time, and have established a solid social and working relationship which leads to trust and success required for working in groups.

Group projects in school never work like this. I for one know that one head – my own head – is better than sharing it with four other heads in this particular circumstance.

group projects 10

 

In brief summary: group projects suck. Nobody can be trusted, especially inept hyenas.

xo kelly

 

Public Restrooms: A Guide for the Sensory Sensitive

Picture this: you are out and about in this great, big world – away from the comfort and security of your own bathroom. Suddenly, it hits you.

bathroom 1

You gotta go.

Perhaps it was those two three cups of tea you had this morning. Maybe you ate a sandwich and afterwards, you remembered sandwiches give you tummy troubles. How unfortunate! Whatever the case may be, you know now that your destination is only one place: the public restroom.

Depending on where exactly you are, your public restroom experience will be either “pretty bad,”extremely bad” or,”oh lord have mercy on me.”

If you’re like me, most public restroom experiences fall into the “oh lord have mercy on me” category. This is because not only do public restrooms suck all faith in humanity from my soul, but they are also SENSORY-DANGEROUS SPACES. What constitutes a SENSORY-DANGEROUS SPACE, you ask?

sensory dangerous spaces chart

Luckily for you, I’ve spent my whole life figuring out the best way to deal with public restrooms as someone with Sensory Processing Disorder. I will now bestow upon you, dear friends, the skills and swift tricks I have mastered to survive these dreaded moments.

1. Know your options

Before heading to your death in a public restroom, stop and think. Do I know of a nearby restroom which offers a BETTER sensory experience? Can I make it there in time? If yes, go there. Always know your options before making a commitment.

Within my first week of college, I made myself into a restroom expert of sorts. In my mind I created a mental map of the entire campus and all its restrooms. Each one had a rating scale of how sensory-dangerous it was. I carefully calculated the time it would take me to run from one class, across campus to use the least sensory-dangerous restroom, and back to my next class without being late. (It’s actually really sad that I had to run through this anxiety-producing drill every day at school, but beggars can’t be choosers….or something like that.)

2. Use your tools

If you’re like me, you keep an arsenal of sensory tools with you at all times. For my particular sensory needs, this includes: ear plugs, bigger ear plugs, noise-cancelling headphones, sunglasses, and a Wilbarger brush.

Much like preparing for battle, one must gear up before heading to a public restroom. There is no shame in this!

3. Go during safe times

If it can be avoided, use the public restroom at times when you will likely be the only one in there. Just one other person can reak havoc upon your restroom experience. Tread carefully!

If it is impossible for you to use the restroom during slower times, then option three is a total waste of time. I’m sorry I even created this option.

4. All about technique

So you find yourself in the restroom with multiple people doing multiple things. I’m talking about hand dryers, hand washing, toilets flushing, doors slamming, kids screaming, people talking loudly on their phones (which by the way, has me all “WTF talk somewhere else”), and many more!

Your tools can only go so far. It’s not about the tools you have, rather, it’s how you use them. It’s time to explore the Techniques for Public Restroom Sensory Safety and Survival, or as I call it: TPRSSS, (pronounced “te-purrs”).

Technique 1: Wash ‘n Go

After you’ve done the business, it’s time to rid yourself of those pesky germs. But wait! Oh no! The restroom is crowded with people using those hand dryers that sound like commercial airliners taking off. For this technique, wash your hands and RUN. Dry on your own time – those hand dryers will wait for no one.

RUIN YOUR DAY

Technique 2: Be aware of your neighbors.

Are your fellow restroomers about to flush and unleash a windstorm of sudden, loud toilet sounds? Be prepared and mindful of your neighbors. Don’t let an unexpected flush or door slam set you off into panic mode.

Technique 3: The Cold Shoulder

In a moment of haste, you may have forgotten to wear hearing protection before entering the restroom. Fear not! In this situation, cover your ears and use your shoulder to take the place of one hand when that hand is in use. Observe the following diagram:

bathroom technique 1

Technique 4: Run, Forest, Run

Move quickly. You are a cheetah in the fast-lane. Slow and steady will not win the race for you when you’ve got sensory issues in the restroom.

Technique 5: Mental Stamina

Here’s the situation: you gotta go, but the restroom is crowded and way too overstimulating for you right now. But you’ve been here before. It’s time for you to use your mental powers to convince yourself that you really don’t have to go at all. Need to pee? Not anymore. Why? YOUR MIND TOLD YOU SO. This technique requires time and patience, but once mastered, it may be your saving grace in a desperate situation.

BRAIN POWERS ACTIVATE

In conclusion, restrooms are a sensory nightmare. But, with the right techniques, you CAN survive the experience.

As I lay awake at night, pondering the insanity that is life, I imagine a world where people with Sensory Processing Disorder can use public restrooms with ease. I dream of quieter toilets, and paper towels for hand drying, maybe even less fluorescent lighting! Let us end the reign of restroom misery!

One day I will enter a public restroom less like this:

bathroom fear

And more like THIS:

make way peasants

xo kelly

Got any other sensory-related restroom advice? Let me know in the comments!

 

 

Infants sound like goats

Jolly good news, internet friends: as of October 2nd, I am an auntie!

The squishy bundle arrived early Friday morning, to greet and delight us with his tiny human-ness. His name is Liam, and here is a drawing I made after I first saw him:

burrito liam

The past several months have been a whirlwind of anxiety, laughter, and mostly anxiety while my family awaited his arrival. My younger sister, Shannon, was a cool pregnant person.

Many women develop strange eating habits during their pregnancy. My sister craved perhaps the strangest food combination: pickles and oreos. Yes, you heard it right. Often, the two foods would be consumed together. *shudders*

Months went by, often accompanied by Shannon’s hormonal rages and short bursts of loathing.

super preg

DESTROY THIS WATER

Five minutes later…

sorry i was terrible

KELLY WONT LOVE ME

After the baby arrived, I quickly became aware of the secrets of baby sounds. So mysterious, yet so informative they are! I’ve decided to use advanced scientific formulas and diagrams to show you, the people at home, exactly what baby noises really mean.

  1. Show me the poop

diaper cry

2. Not feeling it

dont feel like crying

3. Back in my day, I used to be comfy

body position cry

 

4. Is it time to panic? I’m panicking.

lost suction cry

5. A light, tropical breeze of sorts

special surprise cry

6. Whatever bro

funny sounds cry

 

7. Meanwhile, on the farm

goat cry

If those graphs don’t make sense, I honestly don’t know what does. I may have never produced more clear information in my life. The bottom line: newborn babies are squirmy little creatures and they often sound like goats. The sounds they make are varied and complex, like an ancient language. Perhaps someday in the future, the power of science can break down these cryptic coos to reveal extraordinary genius.

Does this not look like a genius to you?

liam bird

xo kelly

 

The Real Restroom Dilemma

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

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

I lied.

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).

The Attic

Some people have stairs leading to their attic. Some people don’t even have an attic. Then there are some people, like my parents, who had a ladder leading up to the attic.

The attic; a strange, foreign land of trinkets from years past, balls of tangled Christmas lights, and deadly creatures. My childhood fascination with such a space overwhelmed me. In the rare moments when the attic door was opened and the ladder would reveal itself, my insides tingled anxiously. It was as if I was staring into the vast reaches of outer space; the universe in all its complexity and mystery lay just beyond the top of the ladder. Green slime oozed from the edges of the attic, surely an indication of some other-worldly experience.

attic 1

I was enamored with the attic. It was terrifying and amazing; it was terrifazing. Amazifying? Whatever. My youthful spirit longed to know of its secrets.

attic 2

Soon enough, that fated day arrived when I would experience the attic. Dad needed to retrieve something in a box up there, and I saw my golden opportunity. This is it, I thought to myself, this is your moment.

With my emotional security blanket (which I named Star) tied firmly around my neck like a cape, I began to ascend the ladder.

How I thought it was:

attic 3

How it really was:

attic 4

As the wind began to pick up, I tightened Star around me and secured my grip on the ladder. Nearly at the top, there was no telling what awaited me. The anticipation was overwhelming.

attic 5

attic 6

Alas! I had reached the surface to discover a world of boxes filled with junk I didn’t really care about, yet I was overjoyed to explore this new, vast wilderness.

attic 7

After what seemed like only a few minutes (probably because it only was a few minutes), I heard the call of my parents from the world below. It was time to descend the ladder and bid farewell to the new world.  As I crept near the opening from which I came, it occurred to me exactly how high up I was. The task ahead required me to turn and go down the ladder. Thanks to my sensory problem, this seemingly simple action became my equivalent of bungy jumping off the empire state building into a pit of blood-thirsty wolves.

attic 9

 

attic 10

With this revelation began a true anxiety meltdown in the four foot high space on the attic. No amount of coaxing or words of reassurance from my family below were alleviating my overwhelming panic. The prospect of having to go backwards down the ladder was truly disturbing and frightening to me. As an adult looking back on the situation, I agree with my childhood self for getting upset. This was a totally rational situation to meltdown over.

It was during mid-crisis in the attic when I realized that the attic was a slightly creepy place to be. Looking around, it became clear to me that there was plenty of potential for evil creatures to jump out of the darkness and swallow me whole. Above me, giant nails protruded through the ceiling, as if a monster was clawing at the house trying to get me. (I later realized these were nails which held the shingles in place.) But things got worse. The beams supporting the roof were covered in some sort of gross, sticky brown substance. A Christmas tree loomed in the corner, ready to attack me with holiday cheer. An old toy doll …well, let’s just say she was the new bride of Chuckie.

I wrapped my blanket, Star, around my head like a veil. It was my only ally and source of protection in this strange and dangerous land.

attic 8

The minutes passed as my family failed to convince me to climb back down the ladder. I became a incoherent blob. As far as I was concerned, I was never coming down. This would be where I’d spend the rest of my sorry little life. My fate hit me like a ton of bricks.

attic 11

Suddenly, Dad appeared at the top of the ladder. Again, I assured him I would not be making the descent back to the mortal world. He managed to convince me to hold onto him and close my eyes. He held me and climbed down the ladder; it was the scariest 3 seconds of my young life. I felt like Carol Anne as she was sucked away from the demons of the underworld in that movie, Poltergeist. I can’t believe we made it down alive. To be able to live among my earth family yet again was such a relief.

attic 12

To this day, climbing any kind of ladder disorients my body and mind. The fear takes me back to that fated day in the attic. Will I ever be able to conquer this body-ladder coordination conundrum? Only time will tell.

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Also, F.U. to my sensory problems. Struggling to stand on a basic 2-step ladder is super embarrassing and mildly inconvenient.

xo kelly

NEWSFLASH: Adults have SPD too

This post contains information that NEEDS to be said. Warning: the following may cause epiphany, sudden awakening of the soul, and Oprah’s “ah-ha” moment. Proceed with caution.

Approximately 93% – I just calculated that statistic in my mind – of all information on sensory issues, both in print and online, are geared towards children.

For a while, that knowledge left me feeling like this:

NOT SURE IF FRY

One of the main reasons I started this blog was due to the near absence of information and resources for adults with SPD on the web or in books. The only exception to this would be a few blogs, and Sharon Heller’s Too Loud, Too Bright, Too Fast, Too Tight, which has become the bible for sensory-plagued adults. Unfortunately, SPD adults often find ourselves reading sensory books geared towards children, and attempting to relate the information to our adult lives. It can be awkward.

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Like many neurological disorders, sensory processing disorder does not go away with time.

A fun fact is that according to many medical “professionals,” children with sensory processing disorder just learn to live with their problems, or they simply grow out of the disorder.

At age 13, many people – including myself – were turned away from occupational therapists for the sole reason that we were too old to be treated for our sensory issues.

I remember asking my mom, with confusion, “What’s the difference if I’m 12 or 13? I still have the same disorder. I still need help for this.” Momsy didn’t know what to say, and she couldn’t have known.

Here is what I know: growing out of something is for clothing. People grow out of sweaters. People do not usually grow out of neurological conditions. They manage it and – in the case of SPD –  learn ways to live within their specific limitations. SPD can regulated with various therapies (occupational, physical, or psychological), but there is no cure for it just yet. However, this leaves us SPD adults with many problems.

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It leaves us feeling a strange sense of being “unwelcome.” Adults are not the target group, if you will, for awareness and research. SPD adults are very much ignored and neglected by the medical community. We often feel a sense of guilt for even asking for/seeking out help from professionals. We are given this look when we mention SPD to our doctors:

wut

This is not Hogwarts, my friends. SPD cannot be sent away with the flick of a wand, nor does it magically vanish when we turn 18. It is not fair or right that adults with neurological conditions such as sensory processing disorder are left in the dark simply because they are adults.

As an adult with SPD, I can assure you that my sensory problems are here to stay (for now). I’ve overcome many of my sensory struggles from my childhood – yes. However, newer and more overwhelming challenges have reared their ugly faces into my life as an adult with this condition.

Due to the belief that SPD is a disorder of childhood – WHICH WE GENIUSES KNOW TO BE FALSEanother belief now exists that there are no adults with SPD at all. Because of this idea that adults don’t have SPD, it is not recognized by our society, and therefore, we cannot get help or respect.

SO WHERE ARE ALL THE ADULTS WITH SPD?

I’ll tell you where they are. They are struggling to find their place in a world that doesn’t work with their sensory system.  Without acknowledgement from our community regarding this conundrum, we find ourselves turned off by the world.

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Moral of the story is this:

Adults with SPD are out there.  We are here! (Well, not really. We are actually trying to avoid the entire world while simultaneously being part of the entire world. It’s a tad complicated.)
Spread awareness and educate your fellow human beans that, in fact, adults with neurological condition DO exist. We need your compassion and respect in order to overcome our challenges.

xo kelly

Dear Depression: You’re Tacky and I Hate You

The following is an open letter to Depression:

Dear Depression,

I am writing to you because I’ve been having some serious concerns with our relationship. I won’t deny the closeness of our bond; we have been friends for many years now, and it often feels as if we are the same person. You know my favorite food, my worst fears, the things that makes me smile, and pretty much everything else – let’s be honest here. You’ve seen me in the shower, for heaven’s sake!

I never wanted things between us to get this intense; to go this far. I knew you liked me from the beginning, and I’ll admit, you seemed strange, but nice nevertheless. I let you into my life, or rather, you let yourself in. I must’ve forgotten to lock my door. From that day forward, you have done nothing but take, take, take. Some people say that their Depression has given them numerous “gifts.” I have not received one gift from you Depression, you selfish poo mongrel.

I constantly compare myself to other people and wonder if you’ve followed them around as you’ve followed me. I’ll never really know because nobody likes to talk about you. Don’t you have other friends besides me? I know you must, but I have yet to meet them.

 

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I am tired. I am so tired of you, and because of you. Here are the things you have made me feel, in no particular order: worthless, unlovable, lazy, disgusting, scared, hopeless, helpless, trapped, and a few more which I will not name for the sake of droning on and on. Depression, must I be exhausted ALL the time? I can’t live my life if you won’t allow me to get out of bed.

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Depression, you cannot have me all to yourself. Even simple things, like going for a short walk outside, was made difficult by you.  I’m in an abusive relationship with you. You are my weakness, and I really hate myself for it. You are a manipulative, controlling piece of crap. 

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Depression, I try to do my best and participate in normal life activities, but you always glue yourself to me. For instance, all those years I went to school, you INSISTED on tagging along. It was nearly impossible to focus with you there. Do you know how hard that was?

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There is never a time when I can be without you. It makes me infuriated – why can’t I separate myself from you? I’ve spent a good deal of my time wondering where I’d be without you; what sorts of things might I’ve accomplished without having you always part of the picture? How different would my current state be if you weren’t insistent on tagging along for, well, everything. Sometimes, I just wanted to be alone.

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I fight you daily.  I fight you using the power of cuddly and delightful things, such as baby animals. Their adorableness creates a temporary physiological blockade of YOU. For a brief moment, you aren’t part of my life.

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That moment is fleeting, however. You tend to bust in, unannounced.

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Depression, once and for all, please get out of my life and stay out of my life. Occasional sadness is one thing, I mean, he’s not that bad of a guy. He knows his limits and respects them. You, on the other hand, do not. When I am with you, I become physically ill. When I glance in the mirror, my face belongs to someone else. I think, who is this person? This is not me. I don’t really look like that, right?

It never ceases to amaze me how talented you are at crushing every tiny ounce of positivity I manage to hold onto. So, STOP. I’ve had enough. I’m breaking up with you, and if it was possible, I would love to throw your ugly butt into a large, active volcano.

 

With absolutely no sincerity,

Kelly

 

(I apologize for the hiatus in blog posts. Actually, screw that. I’m not apologizing. I’ve been dealing on and off with severe depression/exhaustion/crapsauce and have been unable to function on a regular basis. In combo with my sensory problems, I’m feeling totally useless being I cannot work/being an adult under these circumstances. BUT I’M ALSO LIKE:

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