Monthly Archives: August 2013

Timey-Whimey, Moony-Swoony

In the history of human existence, we have looked to measure the intangible. We have measurements for temperature, stress, and pain. The most interesting of these intangible phenomenon is time. Time is such an important part of our lives and we plan our lives around time.

When people first tried to quantify time, they looked to the stars. The phases of the moon would change as the sun rose and set. People began to organize their lives around the moons, which became seasons. Each season brings a new blessing and new gifts. Time continues to move forward and the moon continues to move as well.

Sometimes, anytime, and timeless; time is so ingrained into our lives we don’t always realize it. In some moments, time stands still and other moments time flies. People get hyper focused on the ‘right time’ to do certain things, only too late do some acknowledge there is no ‘right time’. Time can be very subjective and time is different for every person.

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In the past few months time has had a different meaning to me. I’ve enjoyed my summertime, but I’ve been restless. I’m a person who needs to be doing things because I can’t be average. I wish I was happy to work a 9-5 job, have date night one a week, and be ‘average’. Average has never been my forte so the lull of life I ended up in earlier this year did not make me be my personal best.

Change has been in the air for awhile but things really started to take off for me at the summer solstice. The summer solstice is the longest day of the year and marks the middle of the year. After the solstice the nights get longer and people begin to get ready for harvest/fall/autumn. Ever since the summer solstice, my life has grown at an exponential level.

Love, career, health, and happiness has been abundance in my life since summer began. Things have been going really wonderfully, but it has not been all on my terms. I’ve prided myself on living life my own way and I haven’t been able to fully do that. Months ago I made the huge change to move to Portland instead of Chicago and part of the reason was to start a life here. Now, my life gets to begin the next stage.

Starting in the middle of October, I’ll be leaving my current full time job. My reasons are very simple and can be boiled down to one statement; it’s time. Things have been growing around me and opportunities to support myself without my current job have come to me. Through hard work and networking, things have fit into the puzzle of my life. I’m in a position now to fully go for my dreams and I’m confident in my abilities to help me on my way.

This is not the end in any way, but instead an amazing beginning. This has been THE most emotionally intense decision of my life because the people I work with, my peers, are the reason I’ve stayed in my job for the past year and a half. They have taught me more than I’ve taught them and I’ll be forever in their debt for having them in my life.

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Moons have names depending on when they occur and we take some of these names from the Algonquin tribes. These names embody the time of when the moon is full. The Harvest moon is closest to September and was the time when people would harvest their summer crops before winter. October’s full moon is sometimes known as the Travel moon. My last day of work is on the Travel moon. My future is wide open for travel and adventure. I’m young, but I’ve never been one to wait forever. Time moves slowly for some and quicker for others. It’s not the amount of time that we have that is a measure of our lives, it’s what we do with the time we are given.

This is my time.

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!

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“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
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 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.

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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.