Month: September 2015

The Real Restroom Dilemma

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

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

I lied.

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

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

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

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

The woman in the wheelchair replied, “yes.”

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

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

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

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

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

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

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

Or “I didn’t want her to have to wait on the long line.”

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

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

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

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

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

I wish I didn’t have to feel that way, but that’s how much of our society thinks of differently-abled people, and that’s how desperate I am to make things easier.

As we left the arts and crafts fair that day, Momsy and I talked about it. I said, “What if a mother and her young, autistic son asked to use separate bathroom and were turned down, even after the mother explained her situation?” Momsy replied, “They would’ve had to use the regular restroom and the boy would’ve been very upset in there, and the mother would be frustrated and tired.”

I mumbled something like, “that’s not fair. Life sucks. Can we get ice cream?”

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

The Attic

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

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

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

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

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

How I thought it was:

How it really was:

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

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

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

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

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

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

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

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

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

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

xo kelly

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:

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.

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.

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:

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 FALSE – another 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.

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.