Dropping Shoes

Things have been going really well for me lately.

Like unusually well.

I'm one of those people who has had to work for the things they have in their life. I'm not talking about just financial things, but I've also worked for that as well. I've worked for my health, my happiness, and for my career. As you can see in my writings, I'm overall a very positive person with a shiny outlook on life. That being said, I'm not use to things being easy for me. To not have to work and struggle every day to be 'average' is a new feeling.

Please don't get me wrong and assume things are all 100% perfect in my life.

Currently I have laundry sitting on my floor that has been clean since Monday; I hate hangers for some reason and always have.
I have spent the majority of today on the phone with several people trying to figure out this whole "future" thing and I'm now even more confused.
I haven't gone food shopping because I am trying to convince myself I can exist on egg salad sandwiches and pasta until I plan my new week's grocery shopping.  If I don't have a list of what food to buy, I will walk out of the store with a bunch of random things and no meals.
Oh yeah, and I still can't balance my finances because numbers hurt my head a lot.

So with a bunch of 'basic' things still out of whack, why am I so happy right now?

Well, this moment right now will never happen again.
Yup, that's gone.

I'm not sure what is around the corner for me and I'd be lying if I said I knew. Things are changing in my life at an exponential speed and I'm just trying to make the most out of it. I'm enjoying every second of this ride because I honestly don't know what's up next!

When I was younger I heard the expression "Waiting for the other shoe to drop." As a very literal minded child, I had images of falling shoes when things went wrong.  One time my father and me went up on this cable car above a carnival. I had cute little flip flops and was terrified the entire time. I couldn't relax on the ride because I was afraid my shoes would fall off and ruin someone's day.

It's only years later I realize that by stressing over what may or may not happen, we miss out on the moment. So savor your ride and don't worry about losing your shoes!

Diagnose Scattered Members: DSM and Me.

I don't have a hearing device or glasses.

I don't have a visible support like a wheelchair or a cane.

My body type does not obviously disclose my disability. 

But If I see someone wearing a puzzle piece ribbon,

I know what it means. 

Instantly.

I'm part of a community connected by intangible things: behaviors, diets, shared failures, and shared strengths. It's not a secret handshake, per say, but there are some specific characteristics relating to being in the group. Sometimes it's almost imperceptible rocking or a small repetitive motor function like running a thumb around an invisible coin or listening to the same song on repeat every day while driving to the office. These are some of the coping strategies we, in the Autism community, use on a regular basis to blend into the neurotypical ocean.

Being Autistic, I can spot another person on the Autism spectrum pretty well. They bob as buoys in the ocean, easily spotted by other buoys. Sometimes we only smile to each other shyly across the ocean saying everything in a simple gesture; "You are not alone and I understand." Other times the tides are right and buoys get the chance to float together. Although the current affects every buoy differently, it can feel comforting to bounce against another in some of the storms of life. It helps to know, "There are other buoys right around me and they are still floating."


The internet is abuzz with the attention brought to Autism by the new Diagnostic and Statistical Manual of Mental Disorders (DSM-5). In the new edition Autism Spectrum Disorder will be a combination of 4 previous separate disorders. Autistic disorder, Asperger’s disorder, Childhood Disintegrative Disorder, and Pervasive Developmental Disorder Not Otherwise Specified (PDDNOS) will all be merged into the new Autism Spectrum Disorder.  The diagnostic criteria will require a deficit in social interaction as well as some restricted repetitive behaviors, interests, or activities (RRBs).

There are a lot of reasons why this is upsetting people. Although many individuals may easily transition to the new diagnostic label, it may create complications for a few. People are concerned with insurances and receiving proper mental health coverage and losing the various supports depended on for years. The biggest reason it's upsetting people has not really been mentioned by the media because it's a difficult subject.


In American Sign Language, there is a distinct difference between Deaf and deaf. The first word is relating to the Deaf culture and the second is relating to the hearing condition. There is no difference between Autism and autism because there is no real Autism culture. I can easily argue that Autism culture is one of the most segregated of all disability cultures. The disconnect between the in-groups can be compared to some religions; Everyone is reading the same paragraph but interpreting different ways.


I identify as Autistic but I have also carried the labels of Asperger’s and PDDNOS. There is a large community that identify themselves as Aspies, those with Asperger's. These individuals take pride in their quirks and prefer to look optimistically at what life handed them. There are some Aspies are concerned that the DSM-5 change is going to cause them to lose part of their identity. I personally don't think we need to worry about a loss of identity, but we may need to go back and explain what Aspergers is in a few years.

I've worked in the mental health field for 8 years and I've meet hundreds of parents from all over the world. Some new parents  rejoice with the label of Asperger's and fear the word Autism. One label was considered a victory and the other a life sentence. Understandably, parents would fear the worst and worry for their children. Naturally this has led to some parents comparing their children, which is horrible in any circumstance. They compare their children's behaviors, diets, and developmental achievements.

Some people are concerned that the world will see their child as equal to other Autistic children and negatively stereotype their child. (Author's Note:Don't point out the irony.) Every parent wants to look out for their child, I understand this. But the division between groups gets to be a bit too much;
"How can you say my child with Autism will have a life, you have Aspergers?!" was once yelled at me across a coffee-cup strewn folding table.


I'm excited for the DSM-5 because I honestly believe it is one large step closer to uniting a divided community. At the Autism Society of America conference, I was reminded of how many different types of people are part of the Autism community. We have MDs, OTs, PTs, BHPs, DSPs, Parents, Family members, Teachers, and Us; The Autistics. Besides being just a really cool band name,  (Author's Note: I really want to have a band called The Autistics), It is really wonderful to see us being included in the conversations about us. When professionals first began talking about Autism, they were talking about us. Now years later, it is being more recognized that we are the best sources of information about Autism.

I'm optimistic for the future of the Autism community. By continuing conversations and educating people on what Autism looks like, basically there's not one "type", we are spreading awareness by creating more allies. My friends are some of the best educated people I know about Autism, in part because they deal with me on a regular basis. The future is bright and I believe we will have a big A in the future. 

I wear sunglasses as frequently as possible so I don't need to make eye contact.

My cellphone is a support tool and I need it to function.

If people see me in public with someone I'm supporting, they always think we are siblings because we "act alike".

I work with my peers to help them be the best they can be, without limits.

Sandy Books

When I was a child, summertime was a time separate from school time. One a year for a few month kids were everywhere. Summer was also a time for beaches. Before I lived in Maine all year round, my family would migrate to the coast for a few weeks every year. From the Windy City to the Atlantic Coast, we would be at the beach almost every day.

Summer food was never food unless there were a few stray particles of sand in it because no matter how hard you try, there will always be sand. Sand in my hair, sand in my shoes, and sand in clothing that had never even been worn near a beach. Long after the sunburns have healed and the sun streaks have faded, I'll still be shaking sand out from the bottom of my purse: It's unavoidable.One of my first jobs was working as a hotel receptionist in a wonderful place within walking distance to the beach in Ogunquit. It can be very interesting to try to plan a business causal wardrobe when sand is a factor.

Now that I'm living in a little city on the ocean, I'm glad that I do get to see the ocean more. Yesterday you could both taste and feel the ocean in the air. It was a drizzly and foggy day, the type where you want to bundle up with a good book and a cup of tea. I did a fair amount of the tea drinking, but less of the book reading. It was a day off to relax by myself and relax with friends. That's what summer has become for me.

If everything goes according to my plan (*cough* MWAHAHA *cough*), I will begin work on my Master degree in just a few weeks. For the first time in 2 years I will be rejoining the academia world and have a huge excuse, and access, to read loads of scholastic journals. With the colored notebooks and college ruled papers, I'll be partaking in the mass purchasing  of organize supplies to try to organize my life even more. Once again I'll be trading the sand for the studying.

But there's a difference this time.

Last time I worked on my degree I was stranded in the middle of a cornfield. Living on a small liberal arts campus in Iowa, I had a classic collegiate experience. Filled with nerf guns, tasteless beer, and repeated social interactions of "what class are you in", my experiences were wonderful. For four years I was able to dedicate myself to both my academic pursuits and developing as a person. Don't believe I had everything together upon my graduation and was totally prepared for the real world, but I know there were skill I developed in college that I didn't have before going.

This time I'm going for my degree, I'm doing it my very own way.  
For those of you who know me, you know this means things are going to be getting interesting. 
I've found a program I can take just one class at a time, just like my undergraduate degree. Also the University has online programs so I can be a distance learner. Online programs are almost second nature to me and work very well with my interesting sense of procrastination. I'll be able to work on a Developmental Disabilities Masters with emphasis in Advocacy, a perfect sounding program.

Instead of going out to where the academics are, the classes will get to come to me. My life is already pretty set up here in Portland, for the moment anyway, and I have no real intention of running away to any one place right now. Things are going really well for me health wise, career wise, and relationship wise. So the next few months will be working on finding the balance between work and play. Of course things were getting too stable, so I needed to make things a little more interesting. There are some big changes in the works for me and I couldn't give a hint even if I had one.

If I wanted too, I can enjoy the late summer days before going home to write a paper. In those few weeks between when the tourists leave and the summer attractions close; I still get to have fun. The sand gets to follows me home and stay with me for awhile longer. The sun is setting earlier, but it doesn't take away from the radiance. Fall is coming in a few weeks, it's already in the air. There will be beaches and textbooks this year. I can't be more excited, but I'll savor the days of summer we have left.

Act One!

There were some special nights when I was younger and my mother would give us dinner early so the babysitter wouldn't need to worry about feeding us. After I wolfed down dinner I'd rush up and sit on my parent's bed watching my mother get ready. There was this perfumed powder she'd put on only on these special nights. Studying the details for a test that would never come, I watched my mother put on her jewelry and the special black dress. My parents were off to the fancy land of the opera.


Decades later, I'm scrambling out of the shower and walking around my apartment half dressed. There's not enough time for a meal and my mascara is smudged. Most of the time when I'm getting ready to go out I look like I'm in a state of chaos, it's just how I am. So I scrambled to find two matching shoes and I ignored the tights with a rip in the leg, very grateful I quickly shaved/bloodied my legs in the shower. I was off to the Opera!

********
“La più divina delle poesie è quella, amico, che c'insegna amare!”
The highest purpose of poetry is to teach us to love!”
-La Boheme
*******

 The ability for art to affect us is an amazing thing. I spend the last 20 minutes of La Boheme bawling my eyes out with the raw emotion and then I spend the next several hours plotting new creative endeavors.

Why?
 The truth is very simple; I must create.


There are days I wish I was not this way. I think the world must look a whole lot simpler if you don't want to make anything new. To be comfortable with the monotony and have no desire to grow, well that sounds like a fairytale to me. Or at least a Fantasy short story. Image that: a world filled with people happy to live their lives without art or creativity. Okay, that sounds like a horror movie even in the blueprint stages.


Most of the people I am close to in my life are creative souls. We have dayjobs to support ourselves and then in our "free time" we preform for anyone who will watch or we put our art on display for others to observe. We are the type of people who put our souls into a 3 minute dance or on a simple piece of paper. We bare it all because, well, we need to.


By seeing the world as Art and Beauty, it is our calling to spread the gift to others. It is a big responsibility; relaying the message of beauty in the everyday to perfect strangers or friends. Sometimes it is easier to preform for a room full of strangers than to preform in a room with just a few friends. Yet we do it every day and every week, we put ourselves out there for others to see.

And it's scary,
Terrifying,
Heartaching,
Petrifying,
and the most rewarding thing in the world.

********

It's the little blonde girl in the pink sundress, too shy to say "Hello". She stands behind her siblings as they pop bubbles. She is keeping her distance for a bit until she knows what is going on and how to act. It's the Mime she talks to first and when she does talk, the conversation comes easily. She asked questions with the answers given back in pantomime. I always find it adorable when people try to talk to the mime. I let the family know our show will be starting and we need to go get ready, but they should come see the show.


From the stage, which is just an empty corner of a large antique hall, I see our friends sitting in the front row. Eyes fixed on the stage the entire show, the children look as if they are taking notes or memorizing everything for later re-watching.


Our show wraps and we begin to pack away our gear when the Aunt of the little girl comes over to talk to us. She's never seen her sit still for so long or have the attention span for anything like that. She tells us the girl is Autistic. I just smile when I hear this because I know she was taking notes. She was thinking about what she can create and what costumes she can wear.


To help to change a life for a second, even if the little girl never remembers seeing our show, that makes everything worthwhile. That is the love of Art.

Little Bags

"If an emergency evacuation is necessary, leave your carry-on items on the plane. Retrieving personal items may impede the safe evacuation of passengers."
 U.S. Department of Transportation: Federal Aviation Administration

**************
I live my life in boxes and bags. Really, I'm quite disorganized and having specific bags for specific purposes helps quite a lot. My pink bag is for the gym and it always has my sneakers in it. My blue bag is for my swimsuit and beach related props. My lunch bag is for food except when I forget to clean it out and then it is just for the insects. Everything has a place. So when I say earlier this week I unpacked, I meant I unpacked everything.


I unpacked my bags.


After almost 9 months in my new apartment I finally unpacked all of my boxes and bags. I couldn't tell you exactly what prompted the investment, but it was time. In the same amount of time it takes for a human being to grow from simple cells to, well a human being,  I have lived in an organized state of chaos. Nothing has been wrong with my chaos because I've rather liked it. It's cozy and smells like me. It was just time for a change.


Change is a thing. It's neither good nor bad; it exists outside of morals or values. Is change wrong to create a flower from a seed? Is it bad for a bird to grow its flight feathers? Like Death or Taxes, change is unavoidable.


That's where I found myself earlier this week; in a midst of change surrounded by flowers.


As a girl with a lot of baggage (HA!), I knew my really issue was of feeling at home. I've been so afraid of what is coming next that I didn't even want to fully unpack in my first real apartment. Heck, I still don't know what a real apartment should look or feel like. With so many new things I've found solace in some dependable things. Some things that are simple and elegant. The only bag I will be focusing on in my life for awhile is my purse.


*********

"“Above all, remember that the most important thing you can take anywhere is not a Gucci bag or French-cut jeans; it's an open mind"- Gail Rubin Bereny

Coming Home

It was about 8 years ago when I walked into a hotel in Seattle, Washington. I had a suitcase of clothes and a carry on of anxiety, back then you didn’t have to limit your baggage. Walking into the conference center, I was surrounded by things. The things were people, noises, and smells. The people didn’t use whole words and talked in letters. ABA, CBT, ASD, LMNOP; these strings of random letters unnerved me. It was like walking into a new world, a world where people were talking about me. People knew me by name and others just knew me as a diagnosis.

Autism.
I was an Autistic teenager at a national Autism conference.

********

I took a break from going to any Autism related conferences for the last 5 years because I had other priorities. My health was my number one concern and for good reason. So this year I went to Pittsburgh with not knowing what to expect. My memory has faded and I didn't know if I'd know anyone besides a handful of friends for almost an entire week. My presentation was also selected of all the many submitted so I would be talking about the media's influence on the Autistic stereotype; it's really fun for me to talk about that so feel free to judge away.

When I came back on Sunday with stress balls in the shape of stars for my friends, which are now being used as ninja stars chucked at people, I had even more stories to bring. It is a new thing to explain the Autism Society of America conference to people who have never been before. When I went to them in high school I never talked much about them. It was always my thing I did for a few days during the summer. Part of that I think was being so young and never understanding exactly what people were talking about. This information makes PHDs' heads spin so even a smart young woman would not 100% understand everything going around.

But as weird as it is to explain to people, the presentations and exhibit hall of cool things is not really why people go to conferences like this one.


We go to connect with people.


It is the most relaxing thing in the world to realize you are not alone: to hear others speak as if they view the world like you do. With the rise of the Internet, the world is connected like never before and people can meet others from across the globe without ever leaving their bed. So for a group of people characterized by difficulties with social interactions, it is sometimes not until we meet face to face that the connection happens. There is an "Ah Ha" clicking moment where we bond over the smallest and most perfect thing.

The friends I made at the conference and the ones I had known since I was sixteen meshed seamlessly. Strangers would ask how long we had known each other and we'd respond in either hours or years. Age and education are not factors in friendships because that's not the way it should be in the 'real world'. It's someone else who can accurately discuss obscure roman politics or knows the punchline to your favorite joke. We get a few days at a conference to meet people who will be in our lives for a while.

I also love being able to connect with people who have never met someone like me; a well spoken Autistic woman. (Yes, I was also walking around wearing a corset and heels but the corset is so relaxing I will apologize for nothing.) Some people are so accustomed to the media's image of "lost children" that they don't realize Autistic adults are alive and well. I love talking about Autism and Universal Design. I'm able to not just hold an audience, but educate them as well and that is really touching.

Having people come up to me after my presentation and just in general to thank me for being myself is very humbling. I've gone through things in my life I wouldn't wish on a enemy, but it makes every moment worth it to help someone else not feel alone or give them the tools so they never have to deal with what I faced. The advice I hand out like the free candy in the exhibition hall is about love and acceptance. The world is scary enough without thinking you need to handle things entirely by yourself; no one is ever alone.

No one is ever truly alone.

******
There is something called The Duck Test which everyone knows but not everyone is aware of it's official name. It's a form a reasoning to make sense of the world.

"If it looks like a duck, swims like a duck, and quacks like a duck, then it probably is a duck."

My presentation hadn't even started yet and I was standing in the room with a microphone in hand speaking in front of my slides. Talking to friends, friends I had met less than 48 hours before, about everything. Things started and when I spoke, well, I'd be lying if I said I wrote out my presentation. I've never used a written speech in my life unless it was for acting. My words are laced into my being so I mean every single word I say. 

My introduction, which was written months ago mere minutes before the presentation deadline, mentioned my fondness of fire and "acting like a goofball". I was not wearing a suit, but the corset of the day was pinstriped. I talked about Universal Design, Firefly, Rain Man, political theories, and myself. My soul poured out into the camera and sound system recording the presentation. The weight of the conference didn't really sink into me until I walked into my apartment at 4am on Sunday after driving home. I still feel the comforting weight of the conference with me and that's a good thing.

It wasn't until walking into my home in my little brick city that I realized, "the conference felt like my home. It is a different home, but it's home, too."

Temporal Stories

There once was a woman who lived in a castle.
The castle was set in a field of corn, giving the woman a breath taking view of her land.
She wore her heart on her sleeve, freely giving to anyone who asked.
Some people took from her, but never gave anything back.
This made the woman very vulnerable to the Curse.

The curse had many names, but no one in any of the lands could agree on an antidote.
Her breath quickened and her emotions festered.
The walls had eyes and were judging her.
She would become suffocated and scared.
The pain was unlike any wound felt by man, one she would not wish on her worse enemy.
Darkness settled in the land, but she was the only one to see it.
No one else could see the dark clouds descending on her land, but others saw a mist with their own eyes.
The fog would become so dark, she could not see where she could escape to.
She wanted to ask for help from others in the castle, but the mist choked the words out of her.

Silence.

This was her curse.

One day the fog came in and she tried to scream for help.
Almost no one knew that she used her last breath to cry out because only a few could hear her plea.
She knew of a potion, a drastic potion, that could end her pain.
So instead of the horribly ironic set of Medea, she locked herself in her chambers and took the potion.
She wanted to fly above the choking fog, because she could not see anything else around her in the thickness.
She did not think anything was left of her land.

So she drank the potion one sip at a time.
One (bottle) to forget.
One (bottle) to remember life before the curse.
She tried other potions to see if they would work.
More and more she wanted to fly.
It was getting harder to remember what life was before the curse.
One, two, three more sips for the pain.
She just wanted the pain to stop.

She did not know others had heard her cries.
She did not know there were others in the Darkness who could help her see.
Who wanted her to try to break the unbreakable cure.
So she did not fly higher than the birds.
The choice to drink the potion had not given her wings, it just made her sick.
From her sickbed and for months after, she vowed to become stronger so she could learn to fly on her own.

***********************************
"The only real difference between medicine and poison is the dose... and intent." -Oscar Hernandez
***********************************

There once was a woman who lived in a studio apartment.
Her place was located at the edge of a bad neighborhood, but it was her own little place by the Ocean.
She wore her heart on her sleeve, right above a scar few noticed.
Some people tried to take from her, however she did not give pieces of herself freely these days.
Many people knew her, but she did not think she had many friends.

The woman has anxiety around social situations to the point where it will cause her physical pain, something many people don't know.
She lives her life anxious about what other people think about her and if they are being honest with her.
The woman does not comprehend subtly at all and occasionally ends up in awkward situations.
Luckily she has an amazing friends and family to help her when she needs.

One day she thought her friends were talking about her behind her back.
Through the "he said, she said", she became anxious and couldn't think straight.
She wanted to fly with the birds above the human world below and to not feel the pain she was in at that moment.
At that time she saw one of her best friends walking past and waved her over to where she stood.
Her friend told her to relax and go have a drink at the bar, so off the woman went.

One (drink) to remember.
One (drink) to laugh.
Drinks 3 through 8 were also to remember and to laugh.
In her ankle boots, she soared over her friends at the bar.
Her friends.
Her social anxiety, her fear of what others thought of her, was gone for the moment.
She could breath.

The moment bought her time to remember: This fog would lift and things would be okay.
Things change and relationships change, it's okay.
It's nearly impossible for someone to have the exact same relationship with someone else from month to month; some people will grow closer and others will grow apart.
She just needed time to remember.
She needed to remember that she had learned to fly on her own.

She left the bar with some friends at 1am and stopped by another friend's apartment.
A little after 3am, she walked into her own little apartment in her own little town.
She tasted rum and cigarettes on her lips as she kicked off she shoes to lay down.
The woman plopped down amidst her blankets and pillows to fall into a deep slumber.
When she woke up, she was still anxious but she was okay.
She brushed her hair, changed clothes, grabbed her lunch, and left for work.
Things would be okay for the woman.

She knew things would be okay.