Wednesday, December 31, 2014

Obligatory Look Back

Yup... Everyone does one of these. It's nothing new and in fact it's all about the old. This is the day when people look back with a skewed light and reflect on the blip that was 2014.

For me, it was exactly how I expected to spend my 25th year on this earth: unscripted chaos.

The year started with major health scare in the family and progressed to being on the receiving end of months of domestic abuse. I've chosen to leave behind decade long friendships in the wake and have begun to really do that whole "define positive/healthy relationships" thing people do in their 20s as I move forward into the shining future.

On the flip side, I've stepped up the independent/freelancer gig and had an amazing time teaching a summer camp for kinestetic learners. I did presentations in several states and begun some amazing partnerships with amazing people. 2015 is going to be the year I graduate with a Master's degree (if it kills me) and will open some amazing new doors.

When I was younger, on my list of resolutions for years was "Get a boyfriend." I'm not sure when it disappeared from my list, possibly the same time I stopped thinking of gender as binary and became aware I could make choices, but it has not been on it in almost a decade. I use to think of Resolutions as a Post-Christmas list of things I wanted to do for myself. In 2013 I made a list of resolutions I planned to keep and I've included them below with commentary.

- I will challenge myself physically and mentally to become a healthy and strong person.  (... I would have liked the circumstances to be different...)
- I will focus on doing very well in Graduate School. (Got good grades and only needed one incomplete!)
- I will make writing a priority for me and do my best to establish a career as a writer in this coming year. (Oh Hi blog....This is what executive functioning fails look like)
- I will resume being involved in the local film community and try some photography modeling. (Check and Check on both of these.)
- I will keep my current skills fresh by dedicating time to practice and expand to learn new skills. (I've learned fire fans, leviwand, fire eating, and fleshing. Awesome!)
- I will work to foster new relationships and take the time to grow the ones I already have. (I also did some much needed pruning).

So as for my resolutions this year? Well, that's going to come in a little bit. It's not that I don't have them already in the works, it's just I want you to think about your own goals for 2015 and look at what is holding you back. For me, it has been the fear of jumping into something (be it a relationship or a freelance gig) and not getting what I want out of it. Turning down jobs and some relationships this year helped get my mind ready to what it is that I want. Although I've been M.I.A. from this blog for a month, I have been doing things behind the scenes to get 2015 in motion.

2014 was like the date that takes you to a bowling alley and makes you pay for everything because they "forgot their wallet". It wasn't the worst time and I still had fun, but I deserve more for myself. If I'm going to spend my time and energy on things, let's make them things I enjoy doing.

Tuesday, November 18, 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!

Monday, November 17, 2014

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!

Sunday, November 16, 2014

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.

Saturday, November 15, 2014

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.

Friday, November 14, 2014

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.

Thursday, November 13, 2014

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.

Wednesday, November 12, 2014

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!

Tuesday, November 11, 2014

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

Monday, November 10, 2014

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.


Sunday, November 9, 2014

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!

Saturday, November 8, 2014

Brains on my mind

Today I got the opportunity to do one of my passions: acting. I love the Autism advocacy work I do, but there is something about becoming a different character that has always appealed to me. Street performing, theater, film. It doesn't really matter the venue as long as I can put on a good show.

Today I was a zombie in a film. It was cold and hay-covered and so much fun. The Maine film community is a quirky little family. All the experiences I've encountered have been positive with people really supporting each other. I first was cast in a student film my first week after moving back home after college. Three and a half years later and I'm still enjoying it!

My dream in life right now, as silly as it may seem to some, is something I am actively working towards. It is to travel the world performing, presenting, and writing. This past year I started putting some of the building blocks in place. This next year I'm going to be ramping things up even more. Watch out world!

Friday, November 7, 2014

Social you say? More like socially awkward.

I like people.
I like people better in small doses.

Socializing for me can be draining. There are so many different things I need to do in a day, making awkward small talk is not always on my list of things to do. That being said, I do love to hang out with people.

I'm hugely social when surrounded by friends and family. They know I sometimes say weird things (Brigid-isms) or I may miss a punch line. My friends, new and old, know being social is different for me. Sometimes I may just need to leave or I will get too overwhelmed. When I get overwhelmed socially, it does not end well for me.

Social doesn't always mean talking, either. Working on individual projects in the same room as someone else is also a social activity. I feel sometimes we get too caught up in the verbal world we miss the real communication. I will say, everyone staring at their screens in the same room instead of talking is not social interaction in my mind.

So even when it drains me, I need to be social. I've gone to noisy clubs just to hang out with one or two people who will also be there. It is not humanly possible footer me to socialize with everyone all the time, but it doesn't mean I don't want to. Starting conversations can also be difficulty for me which is another big reason I trend to talk to the same people. The only bigger social stresser for me is leaving a conversation.

Yup, I don't know how to stop talking once I start.

Thursday, November 6, 2014

Where are you tonight?

I've made it know that I have a special relationship with the moon. The passing of time makes way more sense to me from a lunar standpoint than just looking at the days passing.

So what has changed from the last Full Moon?

Well now I'm living in the apartment of my dreams. After the difficult times I've been through recently, it feels like I have a great reward for staying genuine and standing up for myself. Today I spent the day decorating and setting up things. Putting things in their place, my place, felt so rewarding. Everything has its own little nook to go in and things fit perfectly. I know I'll be getting some furniture soon and I can't wait. I get to really decorate this place and in the spring I have permission to garden!

It's also been a time of reflection in relationships. As I move on personally and professionally, I deserve to be surrounded by caring individuals. Those who treat me poorly, and who treat those I care about poorly, have no place in my life at this moment. There are some people who are at the end of their journey with me for now. We may meet again, but on different terms. It is a difficult decision to fully remove a person, or people, from your life but it is a decision we must make at times in order to take care of ourselves.

Still, it is a time of celebration as we move into the darkness. This month is already shaping up to be amazing and my trip to the Midwest is beginning in a little more than a week. Don't ask if I am prepared because the answer would shock no one! I'm looking forward to reconnecting with colleagues and friends.

Wednesday, November 5, 2014

Sing loud and make music

To change gears onto happier subjects, I'm going to talk about music today. Music has always been an active part of my life. I was raised listening to everything from opera to jazz. Even with that preface, the first CD I ever bought for myself was N*sync. Before buying a CD, I had tapes and a tape player. As a child, I would record my favorite songs on the tapes and listen to them endlessly.

With the brain damage, music has become an old friend I am getting to know again. When I was younger, I could sight read lots of music and understand how things were supposed to sound. Now I once again become familiar with measures and beats. Things have a way of working back into our memories. The muscle memory of keeping time is still there. I still know the first verse of "Somewhere over the rainbow" but can't play it without tearing up.

I had the chance to see the musical Stomp when I was younger and I've since rewatched clips. It just perfectly highlights something my parents were trying to teach me. Music is everywhere. Music is a part of life.

You know those songs that perfectly capture the mood you are in. How it seems cheesy that a pop singer in her 20s can perfectly describe your marriage, but its true. We have the ability to share our stories through music and relate to others in a very personal way. Researchers once did a study finding one song could actually impact our whole mood. The power of those verses is not something to underestimate.

Songwriting is not one of my many talents. I can't put words to melody, at least not without the help of my friends, but I strongly admire those who do write songs. I can write powerful poetry, but the music lingers in my head like a friendly ghost. For me, I'll stick to singing them and appreciating the hard works others do.

Tuesday, November 4, 2014

It is not okay to kill your child

"Well, I can understand..."

"Well, she was under a lot of stress..."

"We can't judge..."

"We can't know..."

If you read my letter to Alex, you know it really affects me when parents murder their Autistic children. What also contributes to the issue is people who come to the defense of the murderer. I will say that even though I did not birth him, I still acted as my brother's parent growing up. He may have been an unholy handful at times but I'd sooner kill myself than him.

The discussions that are not happening are about the other options for the parents besides the extreme. Extended family visits are an option and, in some states, abandoning your child is also an option. In situations where there is another parent, say to them "I'm going to a motel for a weekend to sleep and read by myself or I may kill our child."

This is not happening to deaf children.
This is not happening to diabetic children.
This is not happening to children born with degenerative medical conditions.

It is autistic kids who continue to be murdered.

Monday, November 3, 2014

Hyposensitivity or Did you feel that?

Hyposensitivity is when a person has difficulties processing input through the senses. This means more stimulation is needed to properly register a sensation.

Hi, my name is Brigid and my tactile sense is completely hyposensitive. This means my sense of touch is not as defined as other people's. Yes, this is the reason why corsets are relaxing to me and deep pressure in the form of weighted blankets or crushing bear hugs are so comforting.

So when I was younger I broke my arm. Now the problem was, I didn't realize my arm was broken.
For 3 days I didn't know it was broken.
It was not until it had swollen up completely and my mother insisted on taking me to the hospital. See, the problem was I could not actually register the pain of a broken arm. For people like me, this can make doctor appointments very complicated because the pain scale of 1 to 10 does not really make much sense. I don't know what a pain rating of 10 would be for the average person. I don't even flinch when I get tattoos or piercings. See the issue?

For those who are hyposensitive, we search out sensory input. For those of us who have a hyposensitive vestibular system, we can spin around forever on those teacup rides at amusement parks and never feel like we are going to loose our lunch. It is only with the extreme sensations do we have a little more comfort in our own bodies.

One of my favorite sensory accommodations is a weighted blanket. I'm currently working to afford one because I've noticed they can help calm me down in record time. This summer I was under a total of 30 pounds of weighted blankets and then asked my mom to sit on my lap, it was a stressful time but it completely regulated me. Until then, I'm currently sleeping under several thick blankets and full sized pillows to get the same feeling.

Sunday, November 2, 2014

Hypersensitivity or Don't touch me!

Hypersensitivity is very common for those of us on the Autism Spectrum. It means exactly what it sounds like, we are more (hyper) sensitive to different sensory things. One thing I've learned from talking about my hypersensitivities, is that people who aren't Autistic are hypersensitive about some things. My level of tolerance for sensory things, as like most people, varies depending on stresses or my health level.

Recently, I've become very aware of smells. Before I could hang out with people regardless of smells like cigarettes or perfumes, but now some smells are getting overwhelming. I've had to walk away from certain places due to lingering food smells. Picture a dimly lit room smelling of alcohol, fried foods, perfumes, leftover cigarettes, and sweat.

I've always had hypersensitive hearing which give me the ability to hear things from great distances away. This can be beneficial when I get lost in a crowd but when I can't filter out all the sounds it gets too much. I need things to be at a quieter level when I'm relaxing. Even when things are normal volume levels, it can be too loud for me. Earplugs are my best friends.

For those of us who also have hypersensitivities, it can sometimes limit where we can go in the community and drain us. Sensory accommodations, such as wearing light cotton fabrics without tags for those with some tactile issues, are how we function in the world. There is no one size fits all solution as what works for one person may be so very wrong for another person. By first identifying which sense, or senses, is sensitive you can begin to discover appropraite accomidations.

I'll discuss the other side of this coin, hyposensitivity, tomorrow.

Saturday, November 1, 2014

Let's try this again.

So this month is one of the months when people write like mad and try to construct and entire novel.
For bloggers, it's trying to do a post a day.

I tried this last year and lasted... a week.
This year I'm going to try again because I'm all about making positive changes and writing daily is a really important thing for me to get in a habit about.

Some posts may be longer and some may be shorter. If there are any topics you want me to touch on, please write so in the comments or on my Facebook page.

We are already expecting some of the dreaded white stuff this weekend so it officially feels like Winter. Let's start hibernating!

Thursday, October 30, 2014

Wake me when October ends

Did anyone else have an October with about 3 extra weeks jammed in the middle?
I don't believe it was just me.

This month has been so much of a roller coaster, I'm still feeling motion sick. I've had some wonderful highs of multiple fire performance events and becoming a member of the board of directors for the Autism Society of Maine.

The lows....well...

----------------------------------------
October is Domestic Violence Awareness month and let me tell you, I'm very aware of domestic violence. If you've read this blog before, you may be familiar with my stories of my father's abuse.

The idea that only unknown masked strangers can cause you harm is the "Stranger Danger" fairytale we were fed in middle school. Unfortunately, it is often those we let closest to us that do the most damage. It is these people we care about and depend on who can wound us the most.

If you are fortunate, you can get away from an abusive situation. However, that does not mean the effects of the abuse are done.

Anxiety.
Sleepless nights.
Depression.
Second guessing your own reality. The REAL reality.
Eating changes.
Lack of energy.
Disorganized thinking.
The list goes on and on....

Even if you do not have a medical label of PTSD, the effects of trauma on a person can be dramatic. I strongly recommend people reach out to others in these situations. Friends, family, and professionals can make the world of difference between replaying the same events in your mind or trying to enjoy your life. Trauma is serious issue and one that can continue to affect a person unless it is addressed.
-----------------------------

The biggest thing I lost this month was perspective. It took me awhile to realize, but one of the worst things abusers do is take away your hope of the future. When I've been in abusive living conditions, there was the idea that things would always be this way.

October was needed to recharge in so many ways. For those who have seen me in person, it's almost become a mantra I've been repeating.

"It's going to be better. Soon."

Soon is November.

Sunday, October 19, 2014

Do you REALLY see me?

I've said it before and I'll say it again, there is one phrase I hate receiving the most.

"You don't look disabled."

This week is Invisible Disabilities Week and the purpose is to raise education, awareness, as well as support. I know many people who live with invisible disabilities, including family members. It is a different way to live when people don't always realize there are struggles we deal with on a daily basis.

It's not just my medical issues, but other disabilities such as depression and anxiety that affect me. Some days are better, but after the rocky couple of months I've had there are some days where it takes a lot of energy just to function a little. There's also a compound issue of having people not understand invisible disabilities, but I can understand people sometimes are confused as to how to navigate through the invisible disability realm.

That's why my advice to EVERYONE is to treat others as if they are facing their own challenges. It takes just as much energy to respond with patience as it does to be sharp with someone. Positivity promotes positivity and there is no reason to be cruel to others. Everyone has their bad days, but the frequency of 'bad days' can increase when you have a myriad of other things biological going on in your own body. I also cannot underline how much of PTSD can have lingering affects on a person.

So this week, I'll issue you lovely readers a challenge.

If you are having an interaction with a person this week who is really pushing you to the limit, be it a driver in traffic or a coworker or a family member or a friend or a partner, take a breath before you react. Take a moment to understand they may be pushed to their limit and a misdirected negative comment could unintentionally break a person's spirit for the day (and possibly a few after). Take a second to understand the person may be in pain and not feel comfortable showing you their struggles.

As the great Bill and Ted once said, "Be excellent to each other!"

Friday, October 10, 2014

Us against the world

I don't remember what I was talking about to my psychologist when he asked my mother to come in at the end of our session. He sat us down and explained that he had 'concerns' about how we viewed the world. This was around the time my abusive father was getting booted out of the home, right before or after my amnesia inducing traumatic brain injury, while in highschool hell, and with all the awkward issues of puberty. His concern was that we had an "(us) against the world mentality."

My mother is so much like me that we were completely confused as to what his concern could be.

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My family has been through hell. We survived abuse of many forms, poverty, life-threatening medical conditions, and still face the world with a kind heart. We laugh at ourselves because otherwise we'd miss the best jokes. My mother raised me to be nice to every creature and treat everyone with respect.

She is my rock and best friend.

So today is her birthday. I wish her many more years of making art, cuddling with cats, and our epic phone conversations which have a habit of beginning "I just need to rant for a second." For many of my friends, she is a surrogate mother offering advice or just a witty remark. She knows life is not always fair, but we can make the difficult choice to spread love and not dwell in the negative.

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Yes, it has been us against the world for almost my entire life. The good thing is we have welcomed people into our close circle and the US has grown. So "US" against the world is not the worst thing in the world. The worst thing would be to think you are entirely alone against the world.

I have my mother; I'm never alone.



If you are interested in her Etsy page, check it out here!

Monday, September 22, 2014

Vote Early!


So I've been M.I.A. from this blog for a bit, but things will change. I know I say that, but this time things are actually working out in my favor. I'm going to be in a position that will allow me to work on my passion projects and bring this whole awesome thing to the next level.

Speaking of the next level....

THAT'S ME!

If you are a member of the Autism Society of Maine, I would greatly appreciate your vote to the Autism Society of Maine Board of Directors. This is HUGE for me and it would be a great honor to work with families, professionals, providers, educators, and legislators to make a positive change to the residents of Maine.

Thursday, September 4, 2014

Show me and Grow Me

 I've already begun to think about a presentation I am doing at OCALI this year. It is a poster presentation (SPOILERS: It'll be interactive!!!) about How to Grow A Healthy Person. I made it not only Autism-centric because one thing I've learned is what works for one person can work for many.

I have a plant named Henrietta, I've mentioned her before. Some people may also know I've been growing lots of things this summer, or trying to at least, with mixed results. Being the Garden Witch and going traveling leaves (hehe) my babies anxious. Coming back in August, I had to do some serious Tender Leafy Care to see what could be saved. I grew a potato! For those who don't think that is impressive, my relatives struggled with growing potatoes  in Ireland a while ago and they were much better at gardening than I am.

My proudest thing right now is of this, my Lemon Balm. I only really identified it yesterday because it was not labeled. It was not labeled because when I first planted it, it did not look like things were going to make it. Growing thriving plants from seeds is difficult for even experienced gardeners at times and this is seriously the first time I have tried to grow things. As a child, my mother would have a section of the garden which was mine and I know if she had not watered it it would have been mulch. 

You can never see how tall our plants will grow until they are finished growing. We never know how mighty we will grow until we are given the chance to fully thrive. If I had given up on this little cutie, I never would have seen him bloom. It just wasn't his time to spring up until I got back. He waited for me and knew I needed to see him. We needed each other.

In some cultures, Lemon Balm represents the balance of Yin and Yang energies. We cannot fully have the light if we do not know the darkness. From the little seed I planted, he is almost all that remains of the original 200+ seedlings in April. He is the balance I needed to show me I have done good. I have brought life into this world. Hearing so much negativity, anger, hostility, gossip and pain causes me to falter. It would make anyone question what is real and what are just hushed stories people tell each other.

I know what is real.
This lemon balm is real.




It takes time.

Monday, August 18, 2014

I want to be social... but I'm not really social all the time

This weekend I went to preform at an amazing festival. It was filled with amazing and friendly people. I love these types of events, but after my Month of Autism (as July of this year shall now be known as) I was getting very quickly overwhelmed with people.

At the Autism events I went to, going up to someone and saying "nice bracelet" or exchanging random quotes from obscure movies can establish a friendship. When people were nice to my face,  I had no reason to believe they were not being nice behind my back. My hearing senses can get turned up and I heard people making snap judgements about me and my friends. Not cool.

Since I wanted to be social and had to take responsibility to pull myself out of a funk, I made up my mind to have fun. In my little cave of Brigid (also known as my tent) I regrouped, regulated, and headed out to socialize.

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I've talked about spinning, or flow arts, quite a bit lately and I don't know if I've communicated it clearly. By finding spinning, I've found a part of myself. Even surrounded by people who I don't know, it was comforting to be known as "The Fire-spinner". I can spin things and relax in a way I've never done before. I had the opportunity to meet amazing fire spinners this weekend who elevate the art to a level I wish to one day achieve, and they complimented me on my spinning.

After a very stressful social encounter last month with someone who retracted a huge Autism leadership opportunity because I don't fit in with their value system, I must admit I felt crushed. It caused me to doubt myself, my values, and my mission in life.

My mission is to spread happiness.

Spending some time surrounded by loving and friendly people, I realized I need to remember to love myself. The path I've walked is one that could only have been walked by me. It takes a lot out of me sometimes just to be me, but I'm proud of everything I've done. I can be social doing the things I love as long as I don't let the negative people affect me. There will always be negative people around me, I just need to shrug it off.

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When people ask me how their child or adult can be social, I often want to talk directly to the person and not about them. All people have their own comfort bubble and for some people we like to talk about our special interests. My special interests are movies, autism, animals, and flow arts. I've talked to people who like dirt, cars, architecture, and very many different things.

Being social can sometimes be a challenge. It can be scary, intimidating, and very anxious. However, the rewards far outweigh the stress. I met a lot of amazing people and I am really excited to get to know my new friends even better and share our successes with each other.

Friday, August 1, 2014

Into the Woods

The month of July was a whirlwind. I spent time in New York, Ohio, Indiana, Chicago, Pennsylvania, and starting the month back in Maine. Literally, I drove into the state today. It was an intense month of personal growth and professional development. It will take me a few days to process everything with a clear head, but there were some important things I learned that I am able to convey now.

I realized I am a lot better under pressure than ever realized. When real life do or die things are going wrong, it is my default to take charge and delegate things that need to be done.

Sometimes it takes listening to a song when you are the only one on a long stretch of highway at 3am to realize why it speaks directly to your heart.

Men-folk are wonderful, but nothing I've ever known compares to the feeling of having women friends support each other and help each other each their personal best.

Driving 2,628 miles in 31 days is not my personal best, but I still managed to retain some sanity. (haha)

The world is bigger and scarier and more beautiful than you could ever imagine.

Gossip is horrible and can cost people their jobs. Even letting it happen in front of you and saying nothing can be just as hurtful to a person. If you really want to know something, go ask the person directly.

Friendships can be formed just by saying "Nice bracelet". It's the littlest things.

So to process all the things in a relaxing space, I'm running off to the woods of Maine. I'll actually be spinning fire all weekend at an EDM festival, but it'll be the perfect conclusion to this month of adventures.

I know it's been said multiple times, but there are big things coming. I can see them on the horizon and soon everyone will be able to see them.

Monday, July 21, 2014

Reflections on Camp

I've been M.I.A. these past two weeks as I was working at the S.P.E.A.K.S. camp in Columbus Ohio. It was one of the most amazing experiences I've had so far, but it was also very draining for me on a personal level.


I was the Film Instructor and helped the campers make and edit their own films. I also worked with the theater camp closely and made a 'behind the scenes' film for them. The videos they made were easy "how to" ones such as "how to make chocolate milk" or "how to go on a trip". The editing process was a lot of fun and I learned everyone loves adding sound effects to movies. (Michael Bay, I'm looking at you.)

The reason why the camp was so difficult for me was, in a large part, due to my inexperience of teaching. I've always enjoyed helping people learn, but being actively involved in the learning process for 7 hours a day, 5 days a week is a lot of work for me. Some days, it was difficult just to get my TA, freelance, and graduate work done.

Despite the exhaustion, rewards of the camp far outweigh the energy loss. For me, having the campers ask me about the next movie we will make made my heart glow. Seeing them pose for pictures in front of the sets they painted themselves with such pride is a feeling I can't describe. Hearing stories about these kids having behaviors and quitting other activities, yet they stayed for the entire two weeks in camp every day was really eye opening for me.

This was a camp run by Autistics for the disability population. We found ways to help support each other in self-regulating while helping solve some of the communication issues that will always come up while working at a camp. It was such an open and accepting environment. When someone would do something or get upset, we'd just let them know it's fine and we ALL understand getting overwhelmed.

At a personal level, it took a couple of people saying things (sometimes repeatedly) to realize how far I have come in just a short year. I've been able to handle complicated and urgent crisis with a grace I never knew I had. Solving problems quickly and effectively while making sure everyone feels safe and taken care of is not something I think I could have done as well last year. It's been eye opening to see where I am now and how much I have grown.

This also completely sets me up for my next two weeks. I'll be getting a chance to talk about why art really matters and how it can help people communicate. Needless to say, the universe hand delivered some answers to me. As one parent said to me, their child learned more than just the film or theater skills we set out to teach.
They learned so much more.
Me too.

Thursday, June 26, 2014

Everything In!

As I'm getting closer to leaving for my Midwest adventures, I'm getting more and more back into my groove. The funny thing is I never really had a groove to begin with, so this is quite entertaining.

On Tuesday morning (ish), I'll begin my trek to Ohio where I'll be teaching a short summer film camp. At this camp, the instructors are all on the autism spectrum and they will be teaching people on the spectrum. How amazing is that! I'm still a bit in shock that in less than 2 weeks I'm going to be an instructor. I'll also be speaking at two Autism conferences before making my way back to Maine to spin fire, of course.

So the next few days Tuesday I'll load up my car and relocate myself for a month.

I'm not sure how some people would react to this, uprooting their life and completely shifting everything for a month, but it's not the worst thing in the world for me. The worst thing for me really is a 9-5 steady job doing the same thing every single day. So this is the adventure path I'm on.

I'm not afraid, except of all my plants dying in my absence, I'm actually very excited.

I'm on this career path and my biggest struggle is not to get too overwhelmed. I addition to all of my fun work related activities, I'm also still a full-time graduate student. In fact, I'm writing this blog instead of one of my papers.

I'm trying to get better at not swamping myself with work, but it is a learning process. It takes times and I need to learn to be more patient with myself. So the next few weeks I get to hermit myself away for a bit, when I'm not having lots of fun, and work on some big things.

Make sure to stay tuned for lots of awesome updates!

Friday, June 20, 2014

(Don't) Panic

I don’t have many memories of when I was younger.

They all tend to blur together in a random mess of connections. It’s interesting because sometimes memories will be triggered by a specific sense. The smell of Florida is one that always stays in my mind. My mother, father, and little brother would vacation down there in the winter. We staying with my grandfather in his retirement village. We drove down from Chicago some years and I think in there lies some of the reason why I love to travel by car. One time, I managed to back all my barbie gear and can almost remember how things looked out on the porch when everything was assembled. I can almost remember the book I was reading that dropped in the water, or it got dropped in a pool, or it somehow got wet. 

I almost remember which book.

So when I did my Midwest/Southern road trip: Escapism Is Cheaper than Therapy, I only briefly passed through Florida. I say briefly because it takes about ten hours on I10 to cross the top of the state. That was the only time I really paid for a hotel/motel. I needed to rest. That’s when the smell triggered me back to my childhood. I remember an ice cream stand in the shape of an ice cream and a mini golf course.

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When I was younger, my parents and doctors thought I had a heart defect. I don’t know how long, but I know I wore a electrodes attached to a bulky electrical box. Once I week we would connect this box to our telephone and it would transmit things to the doctors at the other end of the line. This was in Chicago and since my father knew so many medical people, I remember these guys had a fancy office.

It turns out it was not a defect, but panic attacks.

My panic attacks are very well defined and they have become even more refined as I get older. They still mimic some of the same characteristics, however there are new more devastating results.

When I was in College, I started experiencing some very bad health problems my freshman year. This was after have a very difficult transition to College because I was still physically recovering from my Traumatic Brain Injury and taking tons of medication to control, in part, anxiety. The worsening health problems came from Lyme disease which I had contracted but never experience a ‘target mark’ so it went undiagnosed for years. As an autoimmune disease, Lyme really can be devastating when I have a bad habit of getting myself so stressed out that I become physically ill.

I miss 279 days of my high-school career due to medical issues. I still managed to get on the honor roll a few times, much to the dismay of several people who did not take my medical issues seriously. I’d love to one day receive an apology for how I was treated by some, but it does no good to stay fully in the past. I’d like to say I’ve forgiven many of them who said horrible things to/about me, however the truth is simply I’ve forgotten about them. The only benefit to some of my TBI is I’ve been able to forget some of the bullying I’ve endured, at least most of the time. Being a survivor of many types of abuse, being treated certain ways can induce a Post-Traumatic Stress Disorder (PTSD) Panic Attack.

Part of my complete health overhaul has been getting myself in a place where I can remove extraneous anxiety from my life. I have the skills now to know how to remove myself from situations which will induce a panic attack. It’s taken me a bit of time to spot some of my triggers and it is still a work in progress.

My biggest problem lately has been my stress load. It has been getting very stressful in my life and this has compromised my health. I’ve been having non-epileptic seizures recently, which I have not had since the end of September. My lyme disease has acted up because I’ve been so stressed and this is causing me to be tired, thirsty, nauseous, not hungry, as well as increasingly difficult to swallow. My anxiety also is directly connected to my sensory system causing everything to be hyperactive. This means I can hear things from far away, see very well in virtually any condition, smell things stronger or lingering odors, tastes are stronger or sometimes taste completely different, and every spot on my body has a painful sharp needle feeling similar to when a body part has fallen asleep resulting in one limb being paralyzed for an indeterminate amount of time.

This is my life now.

This is crippling and debilitating feeling. It is on these days when the world swallows me whole that I get the most messed up feeling of optimism. I have no idea where it came from except my mother takes credit. It is on these darkest days when I know the good days will mean so much more. I know those days are filled with laughter and happiness. Those are waiting for me on the other side of this cloud.

I’ve known what it’s like to get lost in this anxiety cloud. I know all too well what toll this is as it’s one a pay every few months. Normally, it’s just a weekend break or something and I pick up the pieces and move on.

This time it’s different?

I’m not use to letting people see the vulnerable side of me. Sometimes when I show the breaking, people run away. I break loudly and ‘suddenly’ all because some straw finally broke the camel’s back. I’m pretty sure this is an autism thing, too. The world gets too loud for us and instead of people helping us quiet it down their voices get louder, too. The anxiety causes me to distance myself from some people out of....self-preservation. Some people it takes a lot out of me to interact with them. Those are the people who move and think very quickly while I’m still lost in the corner. The speed at which they move and talk actually increases my anxiety.

I remember in college interacting with people and it triggering me at times when it seemed like their words fit seamlessly together or moved too quickly. Unfortunately, I hung out with debaters, performers, and campus leaders. These are all pretty loud groups and often I would end up overwhelmed.

It’s been said multiple times by multiple people; nobody is ever neutral to me. People either enjoy my company and like me or else they find me frustrating and rude. It’s in large part because I don’t know how to interact with people in every situation and sometimes I say things which come out just ‘wrong’. I’m still actively trying to work on the interaction part, but as I’ve mentioned earlier it is a work in progress.

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Last night I remembered somethings.
I was triggered back to younger days in different paces. These were memories from when I was much younger and but even more recent. The seemingly random pieces of memories, a view of an elevator or a feeling of the carpet in-between my fingers, again share a sensory trigger.
This trigger is the same panic attack long thought of as a false memory or a bad dream. Trying to convince myself it was only a story I once read, I know this feeling too well in my body.

Even as I move around to new states and grow up, this lump in my chest still feels like home.

This is living with anxiety.

Sunday, June 15, 2014

Let the floods come in

There's a snap that happens. Maybe it's just me, but I doubt it's only me. My snaps just ring silently under the skin until they leak out.
This is the peak when overwhelmed greets anxious.
It's these times when I wonder how something so loud can be so silent.
These are the days where the last stone finally slips out of place and the floods race in.
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This snap is very familiar to me and I've experienced it since I was a child. It's the snap of anxiety when it finally takes your breath away. As a former friend once said, it can reduce me to "a crying ball of useless-ness on the floor". Yeah, I'll forever remember those words as a warning to stay away from a person who I once considered a dear friend.

As much as I try to manage my anxiety, yesterday was the breaking point.

I'd been seeing my warning signs written on the walls, but I had been trying to ignore them. I've been too forgetful. I'd walk into rooms and not even know why I was there and forgetting important things. My appetite has been non-existent while leaving me with a nausea feeling. Bruises have once again randomly appeared because I have not been paying enough attention to my body and I don't always realize something is wrong physically. And then there's the emotions which just cap off the everything.

My overwhelm sessions don't scare me any more because I know what they mean now.

Some people come home from a stressful day and they take a hot bath or have a drink to unwind. I don't do that. I just keep going. I process my stress and anxiety internally so it affects me physically. This leads to the number one thing I've heard for my entire life and I heard it again yesterday.

"This seemed to come out of no where. One minute you were fine and the next you were crying."

THIS is anxiety on the spectrum. It's not just that there is a difficulty separating ourselves from anxiety, we literally get stuck in an anxiety loop. It's a real thing and terribly ironic that I had to grade an assignment on it this morning.

I've stopped looking at my crashes as a negative thing or as if there is something wrong with me. The jerk who thought he could make me feel worse about my own mental health issues underestimated me. I am vulnerable, but not useless. I am fragile, but not delicate. I am strong and I am also weak. Unfortunately, I need to reach my crash point when enough things aren't working in my life. For me, this is just a sign to rebuild and make things stronger.

I've been slipping into 'unhealthy' the past few months and it's time for a bit of a reboot. I'm not ashamed of my struggles because I know other people face them. When I posted the poetry/reality at the top of the page, 3 of the 4 people who responded with messages are on the spectrum. This type of anxiety and meltdown is something we know all too well.

Wednesday, June 11, 2014

Trauma-Rama

Last week began my summer session. I headed off to Colorado to help out at the Autistic Global Initiative (AGI) retreat. AGI is a program part of the Autism Research Institute (ARI) run by autistic self-advocates to create dialogue and promote positive change in the world. When I went, I was an on deck leader to their youth program and was also going to help out with shuttling participants.

There was a theme to the retreat which is very special to me and the reason I was invited: Trauma and Survivorship.

I've spoken about and made allusions to different types of trauma on my blog so far. I've openly spoken about my head injury, which still can be difficult to talk about, and have also talked about some of the toxic relationships I've found myself in. So this past week I relived some of my trauma in order to get a better understanding of how I have healed.

It was an intense week for me because I had to expose a still vulnerable part of myself to better help others never have to go through what I have been through. If one person can get out of a negative relationship, learn to heal, or prevent trauma from happening the emotional toll will be worthwhile.

On Sunday, the last full day of the retreat was designed to the Youth Leaders. We had a facilitator come in to help create a visual representation of how trauma affects a person. I've attached the photograph below so you can get an idea how our conversations went. The AGI Youth Leaders are a diverse group with many different life experiences, but unfortunately we have some traumatic things in common. Although this project was specific to the Autism Community, many if not most of these feelings or reactions are universal to the human condition.

Visual Graph of Trauma from the AGI Youth Leaders, 2014. Photo by Chantal Sicile-Kira.
It was an amazing experience to participate in this Think Tank and there will be some amazing things to come out of our hard work. While at the retreat, we were also being filmed for a few video project relating to survivorship and sensory needs. This material, as well as a great art project designed by my amazing mother, will be put together into a Think Tank packet other groups can use to have their own conversations.

I'm also very proud to announce I was made an AGI partner after the retreat and will be working to help affect lots of positive change with the other partners. Although I will not have an active role in the work the Youth Leaders are doing related to the Think Tank work, I am so excited to see what these amazing self-advocates create. The world is ready for these young leaders to make their voices heard and I'm very happy AGI will be helping make their voices heard to a wider audience.

If you would like to find out more about AGI, please visit their website at http://www.autism.com/AGIFAQ where you can sign up for their free newsletter with lots of useful information.


Wednesday, May 28, 2014

From the Whispers

I'll readily admit I've been missing online most of this month. It has both been a conscious effort and an unintentional consequence of anxiety.

As far as things go, I will say it has not been a slow month in any respect for me. I've gotten so big news and am proud to share it with all you lovely people. I've been accepted to speak at TWO (2) separate conferences this summer into fall. I'll be at AACC (Association for Autistic Community Conference) and at OCALICON (Ohio Center for Low Incidence and Autism Conference).

I've also been busy spinning fire and getting back into the swing of grad school. I'll be bringing back a lot more to this blog (including some guest bloggers) in future weeks as I'll be getting ready for an epic summer.

For more information on my AACC presentation, check out the link below!
http://autisticcommunity.org/2014/05/04/aacc-2014-presenter-list/

Thursday, April 24, 2014

Flunking The Function

Executive function skills is a blanket terms for specific mental processes that help people reach their goals by organizing when things get done.

I don't have consistent executive function skills.

That's one of the biggest issues I have with my life. I'm still working on getting my life into order and unfortunately things don't ever fit into a 'normal' schedule. I wish I had been able to do a blog entry a day for Autism Awareness month, but my life got in the way. Or mainly, I got in my own way.

Executive function skills can affect a person's ability to
  • manage time or attention
  • switch their focus between tasks
  • plan and organize
  • remember details
  • As well as other important organizational skills.
With an added traumatic brain injury, things get even more complicated for me. Sometimes things don't always make their way from my short-term memory to the long term memory. I also will end up in the middle of 4 different projects with nothing fully completed. My brain switches between different projects the same way it would switch between daytime soap operas. In fact, as I've been writing this I've been watching TV, talking to friends, checking out some fire props, picking up a work shift for tomorrow and starting on laundry.

My EF skills always fail when I have a mountain of things to accomplish with a real world disruption looming. If I just were to live in a cabin in the woods for a month I'd have books written and pretend to have more of my life in order. However, the world does not work like this so I am constantly trying to work on my EF skills.

I can't do a blog every day YET, but some day soon I hope to do it.
Maybe some day soon.
For now, I'm going to try to get lots of work done before I start other random projects.

Tuesday, April 8, 2014

On a scale of 1 to 10

I don't register pain like other people. What other people may describe as extreme pressure, such as having a lot of weight on me or wearing a tight corset, is actually very relaxing to me. The "rate your pain" scale does not make sense to me or some of my friends on the spectrum. There are a few reasons for this, but they are all important and can be dangerous.

Pain is normal for me. I've spent a majority of my life living with some type of pain. Difficulty breathing was an every day thing until we learned I had asthma. It's weird to think of the dull throb of a strained muscle or twisted ankle as normal to some, but this is how I know my body. Like a house where the kitchen cabinets stick a bit, it's what I expect from my body. It's not until something really goes wrong and the doctors ask how long my symptoms have been around do things get complicated.

I don't know what other people register pain as, so those pain scales require a little conversion on my part to make myself understandable. When I broke my arm, it took me 3 days to realize it was broken and only when it was completely swollen did my mother bring me to the hospital because "it didn't really hurt." I know I have a high pain tolerance, but sometimes it gets dangerous.

Pain scales require a certain amount of self-awareness even neurotypical adults don't fully master. Since the pain scale never made much sense to me, and I grew up in a house filled with medical jargon, it has always been my practice to vividly describe the pain in ways doctors can understand. Pressure, throbbing, sharp, frequently, dull, sore are all words with tangible definitions. They require little conversion and it allows me to communicate clearer with my doctor. Only once did someone show me a scale with faces to represent the numerical pain. I laughed and said I had no idea what any of those faces could mean in relation to how I felt in my body.

So here I sit in the gym locker room as I recently discovered my hand grip has lessened significantly. This is directly related to the increase in knuckle cracking I've done recently. I've been having trouble holding things lately, but I thought it was just because I've been tired with school and work. Now that I'm aware there is a VERY big problem, I need to work on addressing this behavior. Hmmm... I wonder how I can do that?

Hint: Tomorrow we'll be talking about ABA and CBT.

Monday, April 7, 2014

Learn with me

There are many different learning styles and not everyone learns information the same way. It would always bother me when my assignment in school was to write my spelling words twenty times each. This was a special type of torture for me because I can't physically write for a long period of time. Taking notes during classes never worked for me either because I'd be too distracted to concentrate on what the instructor was saying.

I'm a visual and kinestic learner, so I learn from seeing and doing. When I'm leaning how to do something for the first time, it is easier for me to watch someone else do it first. This is part of why I'm really interested in acting or flow (object manipulation) because comprehension comes from actively doing the activity. If someone tells me information, I'll either try to make it into a picture in my head or the information won't stick.

Some of my friends can listen to entire lectures and ace a test without ever reading a textbook. They learn well listening to audiobooks, can react quicker to conversations, and work well listening to a lecture in a class. However, if they were to get only picture instructions of how to assemble a bookshelf they might get really confused as to how things work together.

A visual learner would be able to understand the diagram and know where the pieces go together. Reading how-to books, looking at class notes, or through pictures. In classrooms, they learn from powerpoint presentations, not just the person reading the presentation aloud.

Kinestetic learners are doers. They learn by physically experiencing an activity. We had amazing projects in biology where we'd build chemical compounds using little plastic pieces in different colors to represent the different parts of the structure. My friend taught her children fractions using lego pieces. If I had ever had the opportunity to learn fraction that way as a child, it may have made sense.

Sunday, April 6, 2014

The path of special interests

I've mentioned special interests before, but they are worth another specific mention. Special interests can help provide the blueprints for the future by focusing on a specific passion. Not everyone goes to college, it's not the right path for achieving every career goal. There is a reason why vocational programs still exist in this day and age. There is a good life in hard working trade jobs.
One of the greatest things about the internet is how connected we are to people of all interests from around the world. The best, and sometimes worst thing, is when we search for something online we can usually find it. This means there are other people in the world who love vintage cars, solar flares, sweaters for cats, potato chips that look like presidents, and many other random things.
With special interests, it is important to recognize them and nurture them. They will change over a person's life, but after awhile you might notice some similar themes tying the interests together.
I started out life wanting to study animals like Jane Goodall. The idea of observational research, or learning about things without actively participating, really interested me. I stopped that path (temporarily) in college to work on Psychology. Now, I knew there were sometimes chemical reasons for people's behaviors. Embracing acting and writing as a profession ties things together nicely. I can now show people stories about the human condition and the many different people who live in our world.

Saturday, April 5, 2014

Among friends

Today I had the privilege of being the only self-advocate speaking at the Southern Maine Autism Conference. As I was leaving, my friend who was there with her agency asked me if I had learned anything new.

For those of you who have never been to an Autism conference, it is a place where people share strategies and support each other. At times when parents and caregivers feel isolated, these conferences are times when they are around other people having the same issues. Meltdowns, Stimming, ASD, IEP, ABA are all terms people freely use and understand. The reason I go to the conferences is to spread my message. I talk of hope.

Autism conferences are a way for people to interact in person when sometimes they are use to only receiving support online. It's a special moment for me to look across the faces of people I am presenting to and see they understand what I'm saying. I write these blogs sometimes not thinking anyone will ever read them. I honestly don't know the impact I have on people with my writing until they tell me. It's a bit of a theory of mind issue I have when writing these things because 99% of the time I think I'm just saying what everyone else knows. Having people come up to me after I presented and thanking me just for being me; that's a very strange feeling.


The things I learned at this conference are important as they affect me both personally and professionally, but they are not nearly as important as what I helped other people learn. I write this blog, I speak, and I share everything in my head because I hope it can help at least one person. I've been alone and had to learn things the hard way at times so I want to spare people some of the difficult I went through.

If you have never been to an autism conference, I'd highly recommend going to one. If you ever have the opportunity to go to one lead by self-advocates or with presentations by self-advocates: go to it. You won't regret any second you are in that room. Trust me, we've been there and are some of the best at describing why we act the way we do.

Friday, April 4, 2014

Orange you glad to see me?

Most people have heard if you eat too many carrots, or other food high in beta-carotene, it will add an orange-hue to a person's skin. This is not just a food myth, it can happen. I've met parents with orange kids because their diet is so restrictive.

People have restrictive diets, or are picky eaters, for a number of reasons. One of the reasons has to do with the texture of the food. I was unable to eat scallops for years because of how they were cooked for me. It make me gag just thinking about them. Some people I know cannot eat raw veggies, drink milk, or a whole list of random food things that are completely off limits.

Another big reason for restrictive diets is a sense of comfort. In elementary school, I had a cheese sandwich on Hawaiian bread with chocolate milk almost exclusively for lunch. It made life easier because I knew exactly what was waiting in my lunch box. Even now, I sometimes fall into a routine of the same foods. The only difference is now I try new foods on almost a weekly basis.

When parents ask me how they can make their child try new foods, I need to correct them. They can't 'make' their child do anything. There were times my father made me sit at the table until my plate was rid of veggies. He did not say they had to be eaten and the centerpiece was often my hiding place for peas. Instead of making mealtimes a horrible or dreaded event, there are so many ways to make food fun by first including the person in the process.

What if there was one new fruit or veggie selected each week and that could be an adventure. What if there is a way to prepare or cook the food so it had a different texture? What if it looked more appetizing? What if food was fun and an opportunity for the person to have a say in their own life? Below is a picture of a fun bento box. Fair warning, if you start looking up fun bento box designs you can spend hours falling down the rabbit hole.

Photo credit Wendy Copley from wendolonia.com
Just like with addressing a biological reason why hearing is impacted, it is also important to address if there is a medical issue preventing someone from eating specific foods. There are autistic people who exclude gluten, dairy, and food additives like artificial colors from their diet. Food sensitivities are less serious than allergies, but also need to be considered. Food issues can also develop at any point in life and can also leave randomly. I was horribly allergic to citrus when I was younger, but now I can eat as much as I want. I mean, I still ate citrus when I was allergic but I didn't care if my face hurt until I ran out of strawberries then I was more upset there was not more. A doctor can run tests to determine allergies, but it doesn't hurt to make a note if there is a behavior or negative reaction after eating a specific food or at a certain restaurant.

Thursday, April 3, 2014

Hear Ye, Hear Ye

When my brother was younger, he ignored people. This was before he had an official diagnosis so people, mainly my father, just thought he was being a brat. J would sit in the middle of a room and we would call him for dinner or tell him play time was over and he'd act as if he never heard us. When we finally did catch his attention, it was always met with "What?" It wasn't until we saw the blood dripping down his ears one day and asked if he was hurt, the "what" revealed something else.

When some people talk, the listening party might be able to understand what the speaker is saying right away. A trait of autism is a delay in auditory processing. So it's not like they didn't hear you, they might still be working on how to respond or figuring out what to do with the information you said to them. Odds are, they are not ignoring you on purpose to drive you mad. That's a waste of our time.

There's a book my mother read when I was a child. It was called "The Cat Who Wore a Pot on Her Head" by  Jan Slepian and Ann Seidler. The story was about a little cat who wore a pot on her head because she liked the way it looked. The problem with this is she could not hear things correctly. So other animals would talk to her and she wasn't able to understand what they were trying to communicate to her.
Illustration by Richard M Martin
As mentioned yesterday, our sense of hearing can be either a strength or a weakness. For some of us, myself included, we can hear conversations across crowded rooms. Other times, we don't understand if someone is talking to us from two feet away because we are so focused on something we are working on. However, it is very important to address any biological reasons for a behavior. It turns out my brother with a history of ear infections was also physically unable to hear us until he had a tube put in to correct the issue. Once he fully healed and the problem remained, then we knew there was something else going on with him. Now when he doesn't listen to us, he's just being a 19 year old boy.

Wednesday, April 2, 2014

Sensory Sensitivity

Everyone in the world has sensory needs. Some people need to work in complete silence and others need to work with music. Some people can't eat certain foods like spicy foods and others drench their food in Sriracha sauce. Some people can't go into Walmart because it is too loud, bright, overwhelming... well that is actually most people when it comes to that specific store.

For Autistics, our sensory needs are specific to each person and can seem complicated. Unfortunately we don't always know our sensory needs until something bad happens and we figure out, "Whoops, can't do that." How do Sensory needs affect us?

The affect our:
  • Taste
  • Touch
  • Smell
  • Hearing
  • Sight
  • Balance
  • Coordination
Everyone can be more aware of their own sensory needs. It takes a certain amount of self-awareness, but in any situation a person can sit back and go "What's working for me right now?" "Is something too loud?" "Is there some smell that is overpowering and preventing me from concentrating?" "Are there too many people here?"

When we figure out what works and what does not work for us, we can better advocate for our own needs. I'll get to advocacy a little later and explore some of the more specific sensory needs of our community in later posts.

Tuesday, April 1, 2014

It's that time of year again

April is Autism Awareness month. It's both my favorite and least favorite time of the year. I dislike it when people talk about 'losing their children to the autism epidemic' but I love all the advocates and self-advocates who step up even more to speak positive messages about Autism Acceptance.

This month, I'll be doing a blog post a day related to Autism. I'll mix in news articles, programs, technology, stories, and coping strategies. The thing is, I want to know what YOU want to hear about.

As a mental health professional, a family member, a friend, and a self-advocate there are lots of things I am able to talk about OR I know someone who is able to talk about a specific area. *wink wink*

So stay tuned for an awesome month and feel free to write suggestions for topics in the page comments (I just figured out those exist) or post something to my Facebook page. As a reader, you'll also get some wonderful guest bloggers popping in this month.

Enjoy!

Friday, March 28, 2014

We are pleased to announce...

I am honored to announce I will be presenting three times at the Autism Society of Ameica conference in Indianapolis, IN. The presentations I will be a part of are listed below.  

  • "Social Impairment?! NOT! the Role of Friendship and Mentoring in ASDs" with Chloe Rothschild, Jennifer O'Toole, Stephen Shore, Sondra Williams, Dena Gassner, and Brian King. 

  • "Music, Art, and Theater; Different Artistic Approaches to Support the Autism Community and Beyond" with Stephen Shore and Gayle Fitzpatrick.
  • "Hear Us Roar! Young Women on the Autism Spectrum" with Haley Moss and Kassiane Sibley.


I am very happy to be presenting with so many friends and colleagues. The Autism Society of America will always have a special place in my heart and I'm so excited for how it has grown since I first went there 10 years ago.

 For more information on the conference, feel free to check out their website below. More information will be released when it become available.
http://www.autism-society.org/get-involved/conference/

I'm also still looking for other conferences to present this year and next so if you know a great conference, please shoot me a message or post on my FaceBook page.

Saturday, March 22, 2014

Fear of the professional waitress

There is an unspoken fear in artistic communities. It's the fear of doing the job you use to support your creative soul, like being a waitress, and ending up doing it more than your creative passions.

This happened to me last year.

I woke up one day in June and realized it had been months since I went to an audition. It had been months since I saw a play. Even my flow arts wasn't as flowy as it should be because life had gotten in the way.

The change to live my life to my fullest creative pursuit was not something I did lightly. It was, and still is, a big choice.

In the past week, I've been tested as to what I want. The choices are literally piling up on me and it is my responsibility to sort through the different options. It's not an easy choice, so luckily the universe sent me reinforcements.

While taking a nap the other day, I felt my phone vibrate. Even though my phone was set to silent, something told me there was an important call I missed. It was from one of my Otter friends. He's an amazing guy I've only met once in person, but we use to talk all the time. Things got crazy and my computer is pretty much on life support, so we haven't talked in a few months. Still, he called me at the right time. He makes a living off of freelance drawing and commission pieces. We talked a bit about how much time it takes to make a living off of our passion projects. He'll work 6 hours a day at least and some days much longer. He does it because he loves it and is great at it. There are days I'm putting in 12 hour days working to support myself and still get 3 hours in of my passion projects.

This past week, I was offered the opportunity to work full time at my job again.
I had to say no.
I said no because it was way more important for me to continue to follow my passion.
12,14,16,18 hour days don't affect me the same if there is a spark of passion.

Pretty sure I've mentioned "The Question" I ask everyone who is discontent with their life.
"If money was no object, what would you want to wake up and do every day?"
My answer has changed into one simple word that reminds me I'm on the right path.
This.
This is what I want to do every day.

Friday, March 14, 2014

When the wave breaks

There are days when it is an achievement to shower and get dressed.

There are days when eating or remembering to eat enough is a victory.

There are days when the safest place in the world is my bed with my stuffed animals.

Having depression and Post Traumatic Stress Disorder (PTSD) does not make a person weak. It means the weight we carry is just more invisible. It is a weight sometimes only we can see and sometimes other do not understand.

Some people won't understand why my blood pressure spikes when I see a blue Volvo drive by.

Some people won't understand why I can't listen to My Chemical Romance's song "Poison".

Some people won't understand why I get a debilitating migraine and sleep 14+ hours a day from around February 27th to March 6th.

It doesn't matter so much if people can't understand why I struggle. The important thing is to realize I do struggle at times and it takes a tremendous amount of work to look like nothing is wrong. There are days when I'd rather spend my energy feeding myself and trying to do something I enjoy.

Sometimes I trap myself into thinking showing my true self is a sign of weakness. This is wrong and this is from years of conditioning from many different people.
I am a strong woman.
I became this strong by failing, by breaking and picking up the pieces after the dust settles.

My strength comes from pushing myself to paddle on in the rough waters and keep my head above the crashing waves. Going beneath the crest does not mean I've drowned. Sometimes the water is cool and is needed to wake me up.

I'm not drowning; I'm just going for a swim.

Thursday, March 6, 2014

Dear Me

Dear Brigid,
I'm traveling back from the mystical year 2015 to talk to you about being 25. I'm sure You are already aware you are in a completely different place then when you turned 24. I'm sure you would have liked a little heads up this year about what happened and maybe I could have saved you some heartache. Maybe I could have warned you to turn left instead of right and things may have ended up different. Maybe I could have brought you more happiness.

That's not how it works, B.

You were supposed to feel this pain. You were supposed to be betrayed so you will know how to treat others better than you were treated. You were supposed to fall in love and lose it to let you know how beautiful it is to care about someone on a deeper level you didn't think possible. You were supposed to get angry at how you were treated because that was what you needed to rocket your life in a whole new direction.

So I'm here to give you a glimpse at what this year will bring you because you need to know you are on the right track.

This year your TA experiences will bring you down a new path. You've been hearing the whispers of people praising your teaching skills, but you haven't paid it much attention. This year you will be able to call yourself an instructor. The things you may be teaching won't be learned in a book, but that is okay. It's time for you to pass your knowledge onto others as people have passed information to you.

You wanted to be a performer, so here's your shot! Literally, you are calling the shots. So run with it and you will be really surprised where it will bring you in less than a year. Audition for everything, try everything, and don't be afraid of falling. You've never been afraid of making a fool out of yourself before so don't start now. Follow your passions and remember: this is what you want to do so don't you dare make excuses! Also, Practice. Practice every single day and don't ever stop trying to improve. That being said, some things will always be a work in progress.

Relationships. Ahh.. This year...well... you already know this, but you need to push yourself out of your comfort zone sometimes to make friends. It's okay. It will be scary, but a good scary. A rewarding scary. You will meet some amazing people this year who will stay in your life for a long time. You will also have some people who were on the outside become more important to your life. The big thing for you is to figure out what type of people you want to surround yourself with. There is no wrong answer, but you know you surround yourself with creative characters with loving hearts. Find more of them and promote each other to greatness.

I have to go soon, the penguins are getting restless, but before I end this there is something you must know for the sake of your own future.

Be kind to yourself.

Take it easy and relax. Some days will be battles to survive and others will be victory marches. You will mess up and some relationships may become strained. Know that nothing you say will ever fully push away the people who really care about you. If they run from your true colors, as difficult as it is to admit, you are better without them in your life. Be strong and celebrate the life you have built for yourself. Others are already celebrating your victories, it's about time you join them. You're a good kid like myself.

Take care and until we meet again, I hope you are happy.
~B

Wednesday, February 26, 2014

The Grieving Archeologist

This is the hardest week of the year for me. This is the week where as hard as I try, the creeping depression looms its head. Depression zaps my energy and steals time I would rather be spending working or hanging out with people. This also bites because this week always is always before my birthday and prevents me from looking forward to it. On March 2nd 2005, I sustained a Traumatic Brain Injury that stole my life from me. Not only did I have months of occupational therapy, physical therapy, medical issues, and no support from my school; I lost my memories.

Yes. Everything in my life before March 2nd in 2005 is now lumped as the scattered images in my head. School years, friends, major life events are all blurred together with no real details and only vague shapes of space where things may fit.

I lost it all.

When things first happened, people thought I was exaggerating. Even now, people don't understand and can't wrap their heads around the idea. I looked the same, but there were things I didn't know or didn't know that I didn't know. Even know, I'm never going to know everything I've missed. I've spent the past few years relearning everyone other people learn in grade school about the world around them and I still have more to learn. It's not like there is a checklist I could go through for memories and see if things are there. Some memories I glimpse scattered in dreams and others take a random trigger to get a peek at what once was.

There sits in my room, wherever that may be in the world, a small box. In this box there are notes and letters and photographs. When my family had to leave our last house, we couldn't take everything. Most of my childhood drawings, photos, and childhood memories were left and destroyed in the house. In some ways it makes it easier to have my old life confined to the size of a shoebox.

This time of year I take out the box and try to look through things; searching for who I once was.

Like any good anthropologist, I look at the clues and try to make connections based on what is in-front of me and the resources at my disposal. I look at pictures of a little blonde girl playing with some friends and I don't know who they are or where the picture was taken. Guess can be made, but finding the answers of names or places only gives small details of the story of her life. Was she happy that day? Were these her close friends? Why was she there that day with those people? These are just some of the eternally unanswered questions about the life I use to have.

My accident came 8 days before my 16th birthday and my birthday was spent in a full body CAT scan. When other people celebrate the life they have had on their birthday, I spent mine in unimaginable pain. This year I turn 25 years old, a quarter of a century, and I only remember the last 9 years. People tell me how young I am and my only response to them is "you have no idea."

It is true, I still grieve for the life I'll never remember. For years after my injury, I spent my time just trying to survive while hiding the emotional and physical pain I felt. It was only after asking those people who knew me both before and after the injury did I realize what was truly lost. My middle-school and high-school career was filled with anxiety and being bullied. I lived in a home more like a warzone where I was hostage to an abuser others denied existed. My self-esteem was crushed and I felt hopeless in my life many days.

 I can't leave this post on a negative note, lest you think I dislike the life I have now.

I've been told after my injury, I became "Brigid" again. I once again became the strong blonde girl who didn't let bullies hurt others, who cares about people she may never meet again, who stands up for what she believes in even if she stand alone, and I've found the happiness years of abuse from many people took away from me. It's true I have remembered some of the worst things that happened to me, but it never feels like it was me living those moments. It was all just a girl who looked like me and shared my name. I've become stronger because I the things I've had to live through have helped make me this way when I didn't let them break me.

This is the hardest post I've written and tears have been streaming down my face the whole time. Part of the reason I write so much now is an ingrown fear I'll forget. I want a record of my life somewhere because I am missing 16 years of records. Thank you all for joining me on this journey and I am very hopeful of what is next for me. Not everyone gets a second chance to lead their life and I work hard to never feel like I'm wasting a second.

I'm Brigid 2.0: the new and improved version. (Now with 2 Birthday Cakes)