Monthly Archives: November 2014

Danger Double Standard

Last night my brother took the wrong bus. He’s never been on a bus and he got on the wrong one which took him to the other college campus instead of heading towards our apartment. I was very concerned about his safety and was worried about him until I heard he had gotten settled. I’m very protective of my brother!

As I write this I’m staying in my accommodations for the conference in what some may described as an “unsafe” area. To get to my motel, you leave the metropolitan area and head over a bridge. From there, continue on the main road past the pawn shops and cash advance stores. Continue on until you see a Burger King next to Wendy’s across from a strip mall. In the strip mall there is a Taco Bell, Arby’s, McDonald’s, Planned Parenthood, Plasma donation center, and a Subway. If you drive behind the strip mall, you will find the motel I’m in.

Now, I’m perfectly fine with these accommodations. I’m staying in a place with free parking, free breakfast, free wifi, and there are not noticeable stains or smells in the room. When going to conferences, the conference centers are often connected to giant mega hotels. One night at one of those hotels is more than my entire stay here, not including necessary things such as wifi and parking.

I’m not really a high-maintenance type of girl, if you haven’t been able to determine. So far on my travels I have slept on the floor and two separate couches. Falling asleep anywhere is one of my super powers. My other super power is the ability to untangle chords, which is extremely useful. It takes the simple things like a roof over my head and a warm bed to make me happy. Since tomorrow begins the conference, I’m going to get some rest. See some of you tomorrow!

Poster Perfect

Back in school, we always were required to make poster projects. These posters would need to be colorful and informative about some random subject matter. I’ve done posters about frogs and constellations and advanced biology topics. Posters and I go way back. When I was younger, my mother would help me create these works of art. I can arrange things, but the actually act of writing all the information down in a neat way is not my forte.

So what’s very interesting is that I will actually be doing a poster presentation at OCALI. Yup, I put myself in a position to create a poster without being graded on it. So my biggest challenge is making things look very neat and clean. I don’t have the best penmanship, but I do have creativity!

Here’s a little sneak peek at my poster. It will be displayed in the exhibit hall beginning Wednesday. I hope to see some of you around the conference!

Executive Functioning Failures

Executive functioning (EF) difficulties are a trademark characteristic of autism spectrum disorders. Over the past couple of weeks, my energy has been spent on taking care of me and not trying to get my EF skills in order. It’s been a struggle for me because I get so overwhelmed with what needs to be done I can’t even get started! Yup, it’s a vicious cycle.

One of the greatest things about this little trip I’m on is that I get to hit a “reset” button in a way. A change of space is exactly what I need in order to get me back on track. For me, removing myself from my comfort zone briefly shocks my system into working again. It works to place myself in a new situation and to reconnect with important people in my life.

I actually work very well under pressure. I have set aside all tomorrow to catch up on things I need to get done before OCALI this week. These things vary from school work to freelance work to personal work. It’s been very devastating for me to have fallen behind in things that mean so much to me. I absolutely love the work I do; it makes my day when I get positive feedback from my peers or students. As I’ve mentioned things related to trauma and energy levels recently, I’ve had to learn to be kind to myself.

I have always been my own worst enemy. I’ve held myself to unrealistic expectations because I don’t always accept my own limitations. One of my classmates actually wrote to me expressing her concern because we’ve been in every class together so far and she has never seen me fall behind. Her, and others close to me, know I do my best to act professionally. I may be young, but I am working on my career right now.

Tomorrow is set aside to get so much done. Yes, there is a phrase about procrastinators. No, I don’t need to be reminded of it.

100!

So I honestly did not think I was ever going to get to 100 blog posts. This is not the first blog I have done, but it is the first one I have taken very seriously. Over the past couple of months, I’ve found it as a platform to discuss important topics and connect with people from all over the world. I have learned we all share some of the same struggles regardless of disability. It is these unifying characteristics which make us all connected to each other, even if we have never met in person.

So today is also a pretty big day because I began my road trip to the Midwest to present at OCALI. This is my second year attending the conference and this will be my first time presenting. My poster presentation is not yet assembled, but there will totally be arts and crafts time here on my first leg of the journey in New York. For now, I get to enjoy the company of friends and focus on catching up on school work.

One of the great things about driving across country, yes I may be a little nuts to drive INTO a Polar Vortex, is it really gives you time to think and reflect. So my wonderful and loyal readers, I will leave you will the questions I pondered listening to podcasts and burned CDs on my first leg of my travels.

Road Ramblings:

If they really wanted to make luxury cars look fancy, they should include penguins in the advertisements. Penguins are already wearing suits and look very fancy.

Pomegranates are wonderful because you can use violence to gain access to food.

I’d imagine the first person in the world who discovered they could not eat gluten felt really left out.   

Cats may one day try to rule the world, but they would be such adorable overlords I’m not sure anyone would think they were a menace.

To College or not to College!

Back before I went to college, not everyone went. People were aware that the collegiate track is not for everyone. Some people do not have scholastic interests requiring a higher degree. In this day and age, not every high paying job even requires a degree. Many of my peers graduated from college only to go back to jobs like cashier, stork clerk, or receptionist. Jobs not requiring the large amount of debt they accrued.

I’m currently working on my Master’s degree because an advanced degree in the field I work in makes me a more appealing candidate. However, it is the work I have been doing for years and not the undergraduate degree I have that really gives me an edge. It’s not just about what skills you say you have, but what you do with those skills employers are impressed with. Most of my resume is work I’ve been doing to ‘pay my dues’ as it is sometimes called.

Somewhere along the line, people decided once you graduate from highschool students must immediately go to college. What ever happen to working a job for a year or taking a gap year? Take some time to figure out what you really want to do before throwing yourself in debt at a high priced college. Why not start by taking some college classes at a local community college? Get some experience close to home and some of the courses may meet prerequisites for another school if you decide to transfer.

For two years in college I was a Resident Assistant. I interacted with freshmen all the time and saw many people, upperclassmen included, questioning why they were there. Not everyone is a good fit for higher education. Vocational schools and other creative arts may suit a person better. It is a very individual choice for a person. It is also totally fine to be 18 years old, or 22 years old, and confused about what path is right for you. We should take time to explore all of our options before thinking we need to be stuck on one “right” path.

Not a person with…

Since this came up again recently, in several mediums, it’s an important topic to talk about.

I’m Autistic.

I do not identify as a person with autism.
I also definitely don’t suffer from autism, so if you think that you are totally on the wrong blog.

 I’m working on my Master’s right now and even when I submit papers, my teacher will try to correct me. “People are more than their disability” the red notes in the margin say. Oh yeah, I’m more than autism but autism is me. Autism affects my daily life, like it or not. The only time I’ll say I’m living with autism is in reference to creatures I live with, humans or felines.

I choose to use identity-first language and this is a conscious move on my part and the part of many other self-advocates. When I get politely told off by parents and professionals for saying “River Tam is autistic”, those are the little moments where I get to try to have a teachable moment. Would you say a “person of Italian heritage” or would you simply say an Italian? How about “a person with homosexual tendencies”? We teach educators and professionals to use person first language, but like gender identity, how about we ask they person how they would like to be identified. Let’s not make assumptions because of how a person looks or how they behave.

There are many different branches in the disability population who do prefer person-first language over identity-first. Again, I am speaking specifically about the autism community. Personally I’ll respond to being called pretty much anything, but there may be an eye roll if the phrase is really condescending. The point is; it is our choice on how we want to present ourselves to the world and the significance of our word choices. For decades it was parents and professionals speaking out and advocating for the autistic community. We have now found a voice and should be respected for the things we have to say.

Autistic is not a dirty word.
It is a strong word.

Let’s get physical!

If you can infer from things, or the fact that I’ve said as much, it’s been a rough few months. I’ve been in a bad place and it’s affected my health. The biggest hurdle for me recently has been the depression. It feels like I’m trapped in my body and unable to do the fun things I want to do and it’s a struggle through the things I need to do. Seriously, let’s not talk about the epic mountain of doom that is the pile of clothing in my room.

So as a way to improve my overall health, I’ve gone back and started working out heavy duty again. I’ve been working to try to create lifelong healthy habits and exercising on a daily basis is a huge one. It’s right up there with eating healthy and not smoking. It’s that whole “My body is a temple” thing I’m trying to do. Again, everything is totally a work in process.

Anyway, as I was cross-train-er-ing watching Community I began to feel better. In fact, once I was done I looked like a drowned red-headed rat. As I dripped over to the water fountain, the endorphins raced through me. It’s been said five million times, but exercise does make you feel better. Cardio is an easy one to do, but I actually prefer weightlifting because it is a deep pressure sensation.

I’ve taken pharmaceuticals before for depression, in fact I did it for years. For me, the side effects were not worth it. My chemical and neurological system is so sensitive, drugs really tend to mess me up. Now that I’m not in the middle of crisis, it is the perfect time to work with natural and holistic approaches. I use catnip (insert joke here) for pain relief and helping get to sleep.  So as I work to get back on my life track, exercise is going to be key for me.

Hey, when I get back from my Midwest adventures there is a new physical activity I’m going to be doing. This new activity is going to take things in a fun new direction when it comes to daily exercise.
Hint: I’ll still be spinning, but not on the ground!

Let me ask you

My friends and I came up with a way to vet out potential suitors.  We would sit them down, have a few drinks, and ask them a series of questions. These are not your usual series of “where do you see yourself in 5 years” as those answers didn’t give us an accurate reflection of the person as a whole. So here for you is one of our questions and my own answer.

The Ordeal: Question Number 8
The scene, an empty stage. The spotlight shines on you and you cannot see the audience. You are wearing a red sequined dress standing before a microphone. What song do you sing?

Given where my life has been lately, I’m thinking a female power ballad is in order. Although originally sung about a bad romantic breakup, the song “I will survive” seems the most appropriate. I can actually picture myself standing center stage and belting out the words. The power of singing out the words in our heart is something I have talked about recently. The music can reach inside and give us strength. That’s why we ask this question. Some people take a comic route while others try to do something impressive. All the choices speak to who a person is and how they view the world.

Me, well, I’m a survivor of course.


I’ve got all my life to live
I’ve got all my love to give
and I’ll survive
I will survive

Sweet Rest

For me, sleep is not always restful.

When my Lyme is really bad, I will end up sleeping about 14 hours a day. Then I’ll wake up not even feeling fully rested. With chronic pain, some nights I wish for sleep while my body yells out at me. Even when I am stressed out, my energy level gets so low that the only reasonable thing I can do is go to sleep.

A good thing about my ability to fall asleep, is I can sleep virtually anywhere. I fell asleep once standing up and I woke up when I came crashing to the floor. Planes, trains, and automobiles are all easy for me to sleep in.  It is something about the relaxing sway of the movement literally rocking me to sleep. It was also discovered in College that I can fall asleep grasping something, a small toy mouse normally, and not let it go through the night.

My bed is covered in blankets, pillows, and stuffed animals. I love nesting in all the soft things and falling asleep. Fluffy, a stuffed grey cat given to me for my first birthday, always lays at the head of my bed. Above my bed is a dream catcher I made for myself. Although I can sleep anywhere, there is something very comforting about being home in my own bed/nest.

Alone but not Lonely

As winter approaches, actually it’s here, people couple up. Perhaps it is something in our genetic structure clinging to another warm body in the cold night. Perhaps it’s because people find thermals sexy. Whatever the reason, this is the time of year when people hibernate with a mate, or two.

When it comes to family reunions over cranberry sauce or turkey, the subject of relationships will always come up.
“So Brigid, trapped any guys this year?”
“Nope, they all chewed through their legs and escaped.”*
*Yes, my family is a filled with snarky wonderful people.

I’m not at that age yet where people start to whisper concerned behind my back about me becoming a spinster, but I am at that age where people expect me to date around. I don’t know why. Maybe people think being in your mid-20’s means living in a romantic comedy. Heads up, my life is more like a Lifetime movie than anything starting Katherine Heigl

So unless Keanue Reeves suddenly comes to woe me, I’ll be holidaying for one again.
But I’m okay with this.
I’m not lonely. 

See, the type of relationship I want is like my friend Allison’s. She is dating her best friend. He’s a science nerd, despite how many times he tells me what he is in school for I can’t understand it, and she is a writer. They have their own lives with their own friends and adventures. When they come home at the end of they day, they are two separate people who are improved by sharing a life with the other person. That’s what I want.

I’ve seen people become couples and compromise who they are on an individual level. For some, they become a stronger unit. I’ve seen couples come together and go against the odds with their partner by their side, something not possible if they were trying on their own. For many people, they end up building resentment for what they ‘gave up’ in the relationship.

I was talking to a younger friend this summer who had a similar experience with relationships. We both are so involved in our work, we don’t even notice people vying for our attention. The daily texts of “Good morning, Beautiful” go unnoticed by us as we crunch to make deadlines and are so involved with our passions. We seek a partner in crime, someone who can join us for adventures but then go on their own adventures without needing us. I’m a firespinning autism advocate finishing up grad school. I know there are people who can fit into my life and I’m going to look forward to finding those people.

You know, after I get back from the Midwest.

Hey, I’m busy!