Currently, I'm relaxing in Boulder and doing my best to figure out the next steps of this wacky thing called 'life'. The greatest part of all this is I'm surrounded by one of my mentors and still feeling the effects of the Autism Society of America conference.
The joke came up several times last week about how several of us go to the Autism Society of America conference to be social. It's a once a year trip most of us make to unite us from across the country. Navigating the whirlwind of meetings and presentations, either giving or attending, we still manage to reconnect in the hallways or in the evening.
On the last night of the conference, what was only going to be a brief dinner with an old friend and my mother turned into something so much better. It started by inviting new friends to join us. That quickly turned to other friends showing up and soon we were taking over a large section of comfy couches. The evening was spent talking about everything as we watched lightning dance across the Denver skyline.
-----------------
That last night before the end of the conference, I was stressed and very nervous about my early morning presentation looming the next morning. My topic for the Sisterhood of the Spectrum panel was "Authenticity". At 8:30 in the morning, still adjusting to Mountain Standard Time compared to Eastern Standard Time, I would speak about the importance of embracing who you are and knowing others have walked the similar path.
One of the greatest things I have come to understand and accept is that I have people in my life who truly care about me. There are people in the world who genuinely want to support others and wish the best for them. I am one of those people and am very thankful for being surrounded by the same type of people. My people are kind and care about each other. This is something very special I was able to be reminded of at the conference.
Sometimes the best parts of the conference are not covered in the program guide.
Showing posts with label Autism. Show all posts
Showing posts with label Autism. Show all posts
Wednesday, July 15, 2015
Tuesday, June 23, 2015
Anatomy of a meltdown
A child's resting heartbeat can be as low as 60 beats per minute.
One of my earliest medical memories is standing in a cold white room learning how to attach electrodes to my skin with words like ”heart defect ” hanging in the air. Doctors had no idea how a young child could go from a very low resting heart rate to over 240 beats per minute while simply sitting in a chair. Walking across the room at home, I'd simply drop to the ground with pain shooting up my left arm. This happened seemingly randomly and later on these carried the simple label of "panic attack" so it was just a part of my life. This was years before my Autism diagnosis when I was simply referred to then as a "hypersensitive child".
As I grew up, these panic attacks began to take a shape and a clear pattern emerged.
The word meltdown sometimes gets thrown around with people thinking it is equivalent to a temper tantrum. That could not be more wrong. Children (and adults) throw tantrums to get something. Meltdowns are your body's way of saying it is overloaded. The human body is capable of taking in millions of pieces of sensory information a day, however there is a limit. This limit changes based on a myriad of variables and can be different from day to day.
Even years later, I'm still trying to figure out my warning signs of a meltdown before I'm in one. The biggest warning sign I've been trying to push past is exhaustion. It doesn't matter if I eat well, hydrate, am in limited physical pain, or anything else as there is a clear tipping point for me. The tipping point is related to my Achilles's heel.
Social skills.
I've spent my entire life trying to study social skills through movies, TV shows, books, observation, and imitation. Inside my head lives hundreds of social scripts for thousands of life situations other people simply experience. It's only very recently I've felt comfortable enough to build my own scripts in public or with people I don't know too well. People who do know me well have a better idea of how my mind works and know I sometimes "cycle" or repeat conversations without intending to. They also know my conversations can jump around from topic to topic seemingly randomly.
My meltdowns look like that scene in the remake of Stepford Wives when Faith Hill starts misfiring and sparking on the dancefloor. My emotions bring me to an anxiety loop where I go from calm to crying repeatedly. My left arm stops behaving like an arm and my heart races. My hearing sharpens and so does my sense of smell. My eyes become very sensitive to light. The worst part is feeling trapped unable to speak.
My words tend to fail me and often I can only mutter "help, please help." My mind races, but perseverates on either real or imaginary flaws. It's my own personal torture and one I strive to keep behind closed doors. It's a combination of fear that has me try to hide these struggles. I am afraid of others seeing my weakness in moments where I am my most vulnerable. In these moments of being completely overwhelmed in the world, there is a thought floating in my mind that this is The End.
My meltdowns pass and I always survive, even though I never think I will at the time. When I was a kid, the heart monitor I wore would upload the recordings over the phone line once a week when it was plugged in. I would sit next to the machine for almost an hour as meltdowns were a frequent part of my life. Now they are further apart, but are still a part of who I am.
Life has struggles and everyone goes through them differently. The kindness shown to me by friends when I'm struggling with meltdowns is overwhelming to me. Even something as simple as a smile or asking if I am okay helps me. I am so thankful for having kind people in my life who understand I do get overwhelmed. I do try to hide my weaknesses, but I'm lucky enough to have people not who don't run away when they see me looking like a hot mess.
I remind myself tomorrow is always a new day and a day to try again. A meltdown one day simply means I need to change something the next day. I will survive and be stronger, personally and in my relationships with others, the next day.
Friday, May 15, 2015
A Road To Me: Acceptance. Love, and Self-care: #AutismPositivity2015
Fridays are normally a "social" night. However, the upcoming weeks will be breaking my brain a little bit with all the social. Starting right now, the next and last free day I'll have until June 4th is this upcoming Thursday. I'll be traveling to 4 different states for multiple events.
Yes, I'm very glad I recently purchased new tires.
I'm willing to drive hundreds of miles in the upcoming weeks with loads of social interactions and new experiences for one simple reason.
I found communities where I can be myself 100%.
My trips will take me to two major flow events. For these weekends, I can spin my props until I can't feel my hands anymore. Then I'll spin using other body parts just to keep spinning. Reconnecting with amazing people who don't flinch at my obscure pop culture references allows me to be social in my own special way. I literally get to talk about or indulge my special interests almost non-stop and it's so liberating.
I'm free to be me.
Self Love is a work in progress for me. There have been deep dark holes in my past where I didn't like myself. I fell into the spiral of negativity; which has ALWAYS been around my social interactions with people. Saying the wrong thing, doing something awkward, laughing at the wrong time, getting lost in the conversation: those little things other people never paid attention to or noticed ate me up from the inside.
Then one day I woke up and realized who I am.
I'm Brigid.
There is no one else exactly like me in the entire world.
Every day is a new change to play and explore the world around me. The first steps to fully embracing myself involve not being so judgmental or holding myself to lofty expectations. My apartment will never be spotless and my laundry will only be fully put away when it decides to communicate with me. "Perfect" is an illusion we create of some imaginary life we think we are supposed to have.
Instead of being social tonight, I'm taking it easy at home. I've defrosted a pizza and have a bottle of wine. It's an Eternal Sunshine of the Spotless Mind type of night as I get things prepared for an active weekend in front of me. Tonight needs to be restful so I'm on top of my game for this weekend. Take it easy on yourselves and treat each other well.
Yes, I'm very glad I recently purchased new tires.
I'm willing to drive hundreds of miles in the upcoming weeks with loads of social interactions and new experiences for one simple reason.
I found communities where I can be myself 100%.
My trips will take me to two major flow events. For these weekends, I can spin my props until I can't feel my hands anymore. Then I'll spin using other body parts just to keep spinning. Reconnecting with amazing people who don't flinch at my obscure pop culture references allows me to be social in my own special way. I literally get to talk about or indulge my special interests almost non-stop and it's so liberating.
I'm free to be me.
Self Love is a work in progress for me. There have been deep dark holes in my past where I didn't like myself. I fell into the spiral of negativity; which has ALWAYS been around my social interactions with people. Saying the wrong thing, doing something awkward, laughing at the wrong time, getting lost in the conversation: those little things other people never paid attention to or noticed ate me up from the inside.
Then one day I woke up and realized who I am.
I'm Brigid.
There is no one else exactly like me in the entire world.
Every day is a new change to play and explore the world around me. The first steps to fully embracing myself involve not being so judgmental or holding myself to lofty expectations. My apartment will never be spotless and my laundry will only be fully put away when it decides to communicate with me. "Perfect" is an illusion we create of some imaginary life we think we are supposed to have.
Instead of being social tonight, I'm taking it easy at home. I've defrosted a pizza and have a bottle of wine. It's an Eternal Sunshine of the Spotless Mind type of night as I get things prepared for an active weekend in front of me. Tonight needs to be restful so I'm on top of my game for this weekend. Take it easy on yourselves and treat each other well.
And maybe it's funniest of all
To think I'll die before I actually see
That I am exactly the person that I want to be
To think I'll die before I actually see
That I am exactly the person that I want to be
Amanda Palmer- In My Mind
Monday, May 11, 2015
Food Stamps and Ableism
I live in Maine.
Recently, our state has gotten more nationwide attention because our Governor has made statements and policy changes about the use of Food Stamps. In the past year, our state has required photo identifications on EBT (electronic benefit transfer) cards to reduce fraud. Maine has also implemented a policy requiring "able-bodied adults without dependents" to work, volunteer, or be part of a vocational training program for at least 20 hours per week in order to continue receiving food stamps. In a state with marijuana legalized for medicinal purposes, he also is trying to push for universal drug testing. Even Fox News has described our Governor's plan as one of the "boldest welfare reforms". Governor Paul LePage has also recently issued statements about wanting to prevent EBT users from purchasing items like soda or chips.
If you have never gone through the process of applying for food stamps, I'm not sure you understand what it is like. It's not as if you walk into a building and they hand you a preloaded card with thousands of dollars and tell you to run wild. It's a process taking a minimum of months if all the bureaucratic wheels are running smoothly. You need to demonstrate your continued need for assistance by paystubs, bills, leases, ect. Even then, you may be lucky to get 17 dollars a month for a household.
Recently, there has been a surge of "outrage" by fellow nosy shoppers who are judging what EBT users are purchasing. I have a few HUGE issues with this.
1. Why do you care what other people purchase?! (I literally NEVER notice what other people are buying in line because I always have a momentary panic thinking I forgot my wallet once I've arrived at the register.)
2. How does what anyone else chooses to put into their body affect you or your life?
3. What makes you think you know what someone's life is like based on the few moments of their life you observe reflected in the items on a conveyer belt?
Invisible disabilities exist all around us including those affecting us mentally and/or physically. I've been told I don't "look" disabled, however those wonderful employees who work at the grocery store near me may have a different opinion. Sometimes there is not the energy to cook a meal from scratch. Other times we need to get nutrients ASAP or else something not good may happen to us. Other times my sensory system will prevent me from eating anything other than a restricted number of foods.
Don't judge what people buy.
Period.
----------------
Earlier this year I was very sick. I lost 9 pounds in just 5 days because I could not eat anything and my survival was solely based on 100% fruit juice popsicles. When I could finally stomach food, my body was craving red meat. This is a family trait and one we identify as "turning the corner" to recovery. I used my debit card for my purchase and I'm not sure if anyone noticed my payment method.
Did they see the graduate student who presents internationally on Autism and part of an award winning performance troupe?
Did they only saw the girl with the messy hair in sweatpants buying a steak and make the assumption she was a "welfare queen"?
I know they didn't see the face I made while eating my first meal in almost a week or my face as I fell asleep with a nutritious meal in my stomach, instead of with the hunger pains I know all too well.
Recently, our state has gotten more nationwide attention because our Governor has made statements and policy changes about the use of Food Stamps. In the past year, our state has required photo identifications on EBT (electronic benefit transfer) cards to reduce fraud. Maine has also implemented a policy requiring "able-bodied adults without dependents" to work, volunteer, or be part of a vocational training program for at least 20 hours per week in order to continue receiving food stamps. In a state with marijuana legalized for medicinal purposes, he also is trying to push for universal drug testing. Even Fox News has described our Governor's plan as one of the "boldest welfare reforms". Governor Paul LePage has also recently issued statements about wanting to prevent EBT users from purchasing items like soda or chips.
If you have never gone through the process of applying for food stamps, I'm not sure you understand what it is like. It's not as if you walk into a building and they hand you a preloaded card with thousands of dollars and tell you to run wild. It's a process taking a minimum of months if all the bureaucratic wheels are running smoothly. You need to demonstrate your continued need for assistance by paystubs, bills, leases, ect. Even then, you may be lucky to get 17 dollars a month for a household.
Recently, there has been a surge of "outrage" by fellow nosy shoppers who are judging what EBT users are purchasing. I have a few HUGE issues with this.
1. Why do you care what other people purchase?! (I literally NEVER notice what other people are buying in line because I always have a momentary panic thinking I forgot my wallet once I've arrived at the register.)
2. How does what anyone else chooses to put into their body affect you or your life?
3. What makes you think you know what someone's life is like based on the few moments of their life you observe reflected in the items on a conveyer belt?
Invisible disabilities exist all around us including those affecting us mentally and/or physically. I've been told I don't "look" disabled, however those wonderful employees who work at the grocery store near me may have a different opinion. Sometimes there is not the energy to cook a meal from scratch. Other times we need to get nutrients ASAP or else something not good may happen to us. Other times my sensory system will prevent me from eating anything other than a restricted number of foods.
Don't judge what people buy.
Period.
----------------
Earlier this year I was very sick. I lost 9 pounds in just 5 days because I could not eat anything and my survival was solely based on 100% fruit juice popsicles. When I could finally stomach food, my body was craving red meat. This is a family trait and one we identify as "turning the corner" to recovery. I used my debit card for my purchase and I'm not sure if anyone noticed my payment method.
Did they see the graduate student who presents internationally on Autism and part of an award winning performance troupe?
Did they only saw the girl with the messy hair in sweatpants buying a steak and make the assumption she was a "welfare queen"?
I know they didn't see the face I made while eating my first meal in almost a week or my face as I fell asleep with a nutritious meal in my stomach, instead of with the hunger pains I know all too well.
Thursday, January 22, 2015
Bring on 2015 conferences!
So I've been getting into the 'zone' of being back in school, or at least trying to find the zone, so I seem to have missed something really awesome.
March 14th I will be presenting at the Southern Maine Autism Conference located at The DoubleTree Hotel in South Portland, Maine.
This is the third year in a row I have presented at this conference and I love doing it. This is a free conference to attend and that helps to spread important information to people who need it. My session is entitled "It's Not Easy Being Me: Highlighting the Strengths". I'll be discussing strength-based perspectives instead of deficit based models and talking about self-advocacy.
For more information and to register for this event, please visit the site below.
http://www.maineautismconference.org/
In a related note; if you have a conference in your area you'd like to see me at please let me know! I also accept invitations to speak at small groups and do training sessions.
March 14th I will be presenting at the Southern Maine Autism Conference located at The DoubleTree Hotel in South Portland, Maine.
This is the third year in a row I have presented at this conference and I love doing it. This is a free conference to attend and that helps to spread important information to people who need it. My session is entitled "It's Not Easy Being Me: Highlighting the Strengths". I'll be discussing strength-based perspectives instead of deficit based models and talking about self-advocacy.
For more information and to register for this event, please visit the site below.
http://www.maineautismconference.org/
In a related note; if you have a conference in your area you'd like to see me at please let me know! I also accept invitations to speak at small groups and do training sessions.
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.
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.
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.
"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.
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.
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.
Monday, September 22, 2014
Vote Early!
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.
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.
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.
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!
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.
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.
---------------------
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.
---------------------------------
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.
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.
---------------------
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.
---------------------------------
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.
------------------------
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.
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.
------------------------
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.
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.
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. |
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/
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
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.
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.
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.
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