Instruments of Learning

(Dillan’s speech from the first Spectrum of Opportunity conference in March 2016)

A very long time ago there was a boy with incredible challenges, so he decided that the only way he could have the kind of love and peace he wanted was to spend more and more time with his toy animals.

In school, the teachers had been trying to make up new ways to teach the boy how to be a student before they even understood him.  All they learned and understood about autism was that it should be brought under control, otherwise the boy would never learn. Decisions each and every day made the teachers feel they were doing good for the boy, but for the non-speaking boy, all he had was his mind to hold on to.

img_4109-1

Before my teachers could even begin to really help me, they needed to understand my autistic mind. 

Autism is amazing in the way my reality is experienced.  My sensory system is like a movie that doesn’t play on the screen in a way you might think. You have no idea how important my sensory system has been for me. I may look like I’m not in this world, or tuned out like so many of you think, but what is really happening is that I am absorbed in the world around me. My mind keeps track of all the sensory information like a movie that I can manipulate.  I am able to fast forward, slow down, and even pause the world.  I have always enjoyed placing the world on pause and studying it in extraordinary detail.  My teachers had no idea about having a mind like mine, and so we were locked in a constant battle.

Dealing with their academics was like a stationary bike, always peddling and going nowhere. Easy lessons repeating day after day in place of a real school education. Much of my mind wanted to know about the world like any other student, but it always was impossible. What my teachers believed about me influenced what they taught me.   And these teaching practices were the problem, not my autism.

What I needed was my teachers to be my instrument.  I needed them to learn and realize that autism is not a behavior, it’s a language to be viewed with respect.  If they could have realized that, I would have played the most powerful music with them as my instruments of learning. 
Our voice is hidden from the world of educators.  All they think, they learned from minds that are not autistic.  All they learned could never have helped them to help me.

The right teachers are all around you. They are autistic, giving people that have been speaking for a long time.  Listen to their stories and make the especially hard cultural change in the way you talk to and teach others of us who have not yet been freed.

Advertisements

West Coast Communication Symposium

**A look back at summer 2015**

(A communication conference hosted locally by REACH (formerly WAPADH) in July 2015.  Dillan was thrilled to participate in two of their panels, and also had a chance to hang out and chat with Tracy Thresher of Wretches and Jabberers)

West Coast Communication Symposium - 42

I. Taking Our Rightful Place – panel of high school students who type to communicate (on panel with: Emma Cladis, Jeffrey Diamond, Woody Brown and Killian Hynes).

I was lucky enough to be asked to share my experience as a student in high school who types to communicate. The people of WAPADH have been helping me find my voice for years and now I have the opportunity to share it with others in my situation and the people around them.

(Following were Dillan’s comments on the subject)

People are always afraid to let autism into their classroom. Making the teachers nervous easily is the first trial to get over. We do not belong in their idea of a perfect classroom. They do not say it, but it is plain to see. I greatly need a strong partner to help me bring my type of learned mind out where they can see it and not be nervous about the autism in their classroom. Need a typical education, but really not in a typical way. I will move, I will make noise, and sometimes I need to leave class. But to leave class is different than to be blocked from class by people who do not believe I was ever really there. In classes not familiar with so much autism that is easily seen, it can be hard to make a good impression. I am more work for a teacher who has so much to contend with before they let autism into the room. People, it is only possible to overcome this all with a team behind me to keep my autism in needed peace, so the teacher can forget it is there and teach things I want to know.

My autism is full of erratic needs and constant impulses. I am not always able to stay rational, so it is critical for someone near me to keep me from drowning in autism. Deb knows how to keep me even and what to do when I can’t be stopped. It is not so bad when things do go crazy. It happens and then it passes, and it is a poor reason to keep all of the autism locked away in a small class of boredom and repeated lessons of washing hands and days of the week.

Having technical skills in supporting a typer’s communication is only one piece to the puzzle of autism. I need a multidisciplinary approach. I am supported to type answers to academic problems, and to say what I think and control my uncooperative body. Some days I am able to handle more on my own, but I need someone to believe in my ability to gain independence and recognize when I do need additional support.

Not only is the strategy or intervention important, its also knowing when to use it and when not to. A strategy may be helpful in one class, and dangerous in another. Gaining regulation is first. Then I am able to get to a place where my rational mind is in control and I feel somewhat calm and able to succeed. It is important to have a support person who is flexible and ready to help me acquire the ability to navigate and perform what I need to be a student in a classroom.

Most importantly, I have to talk about the emotional piece to my educational experience. If I had a support partner that only focused on typing and academics, it wouldn’t be enough because I would not be a real person to them. In taking my feelings and experiences into account, I become whole in my support person’s mind and then I know I’m not alone in this world. I need to be heard. I am not heard when therapists are using some strategy alone and not really talking to me. We lead lives in isolation, and to type opens doors to personal relating, which is the real meaning of communication.

“Young hibernating mind ignored for many academic years finally woke up.  The expectation to successfully tell people I am smart enough has been set, and no ignoring it.  Hearing teachers educate my mind supports my communication and lets me excel.  Fluidly tuning in to how I communicate identifies a good communication partner.”

 

West Coast Communication Symposium - 29

Dillan was so happy to be at the conference, but needed a run!!

 

II. Taking our Voices into the Future – panel focused on future advocacy in the areas of communication, education and inclusion (on panel with: Tracy Thresher, Larry Bissonette, Emma Cladis and Jacob Artson).

People with autism are finally coming out of their isolation and showing everyone their minds and hearts. We need to break more silent voices free to the public eye. I spoke about moving forward and the future of educating those with autism.

2015-07-27 12.58.42

(On this panel, Dillan shared an autobiography he had written for school in the 9th grade)

My Autobiography

I am Dillan Barmache. I was born in December 1999 and I have autism. Home is a kind of haven for your nice, typically wired kids. But if you have autism, not the kind that is so much more easily navigated, but the kind that is tough, the kind that leaves you in a prison each day, home is the only way to stay sane. My amazing dad and mom always loved me, even though I totally ran around when they tried to be near me. It’s incredible how they could have loved me since I was incapable of making an uncooperative body love back. In the evening, I really was so difficult. Some days, before their patience and strength ran out, I would attempt that impossible-to-resist dream of getting my body to calm, always at a disadvantage. My brother Ethan is totally that typically wired kid. I think of his nine years and all the time we have not been able to communicate. I think instead of the pain, I remember the only way for the love to be shown inside our hearts was in our play and in our arms around each other. The only way to stay sane was in the hobbies a person like me could find that would engage my autistic mind. So it was in my family pictures that I found looking back at me a sort of life that seemed normal. And the only other way to stop autism’s control of me was to keep my body working its muscles with Cross Fit and running. Autism’s hold is broken by feeling the sensations brought on by hard exercise. Internally getting a sensation is sometimes more attractive than outside sensory stimuli.

Every day I dreamed of finding an experience that my teachers would never bring to the classrooms for people like me. Until the time I was in middle school, I experienced institutional lessons that frustrated me. They taught us concepts that bored the mind and meant nothing to bodies that couldn’t listen. I would not entirely say that I ever expected to be treated like a student who really was capable of some higher-level thinking. In cases like me, if a student cannot communicate, not since venturing into this life, it finalizes how people speak to you. So when I acted out behaviorally, it made people conclude that little was in my mind. To remember the way that I was in those early years is extremely hard. To not have the help I needed to be heard was like being in the worst place imaginable. It would have been easier to get through if I were really the kind of student that teachers and people believed in. The hope for understanding for my autistic mind was placed in the hands of the teachers and specialists. Each person is wired differently. Autistic wiring sometimes appears to be radically different than any other little kid who is typically wired. The normal learning that I thought I was going to get was in reality attempts at conditioning autistic behavior using repetitive circles of experience that oppressed my mind. Their way to my education was to have control of my behavior. My autism took over easily because much of my mind was finding it’s own information to learn. My elementary school years also became filled with reports of my out of control behavior. I admit I was extremely broken in soul and spirit. In elementary school, I was in an autistic class that for years taught me that I was far more set in my autistic mind than people could handle. Pathetic lessons intuition told me I already knew, but my sensory system was so overrun each second of every day that I only had my experience in other things to help. Yes, I even thought when I found the difference between my autistic mind and my regular mind that my life and education would be better. I was going nowhere until my middle school experience. Very little has been said about how education could be handled in an effort to teach the totally sensory driven body. Most importantly, teachers have to believe that there is a mind capable of some higher-level thinking. Never had I imagined that one day there would have been an individual who used determination and belief in a way that unsuccessful teaching approaches could not have attained. The kind of education approach I needed was an intense combination of working the mind and body in order to get to know each thought. I learned that if I experienced respect with a sense of patient emotions towards my autistic mind, that I could begin to feel hope. With time, anyone would assume I have dealt with all my educational pains. In reality, only recently am I able to feel safe enough to look back at my reality, which was a lot like being trapped in a sort of death; a life not living.

To really be heard has always been my dream, so when I gave my graduation speech entirely without saying some stupid remark about the way autistic people are educated, all the people heard that day at my school; and then even more that afternoon on the news. I never thought it would take only a few years of intense work to get my autism to live without needing to be in control every second of my day. I learned that if you never place your belief in some people, you will never have the rare chance at a dream.

The future is something I realize that can be uncertain. I hope I do get lucky enough to work with another person who understands autism. I am able to do anything as long as I am supported by a person educated about the sensory needs that I have. The importance of an education is to learn about some area of study. To be able to learn and be at a college on my own, and then to be able to give talks about disabilities would be my goal. Maybe someday I can find an amazing woman. I really love the idea of marriage, but I am not sure about kids. I hope I will have the very same chance to be in a real relationship that all other people have.

I am still trying to find the answer to the reason for why we are here. To my disappointed self, I try understanding why I have autism. And sometimes I will even start to reach a conclusion that I am meant to do more, even make a difference in the world. But on the days when I get lost when dealing with me, the autistic me, it is so unbelievably difficult I think I am simply in hell. Reality can certainly be overwhelming. I am lucky though to work with eclectic people who talk to me and hear me, something that means the world to me.

2015-07-23 16.43.18

Debbie and Cheryl…part of his “eclectic” and fantastic team!

 

III. Spending time with Tracy Thresher (a highlight for Dillan!)

There are many people who would say that it was impossible for either the man who inspired my journey or myself to have a dialogue. However, against all their doubts, we both sat and discussed our hopes and dreams together.

West Coast Communication Symposium - 54

 

Thank you WAPADH/REACH for hosting such an important and much-needed conference!

West Coast Communication Symposium - 81

Darlene and Katie of REACH with Dillan and mom

Middle School Graduation

At the start of 9th grade, Dillan was asked about his proudest achievement in school  9/17/14

My greatest achievement in school was to give a speech to my graduating class in 8th grade.  It was important to me to at least have an opportunity to be heard, not in a personal self gratifying way, or in a public acknowledgment way, not even in an intrinsic sense.  I did it to tell as many people as I could that even though we don’t speak or control our bodies, we are never not a student, deserving of an appropriate education.  Am only having an opportunity to have an opinion and voice thanks to the relentless efforts of people who believe I am competent and have a mind.  A person with a mind intact.  And so now high school lies ahead of me, and I hope to have more achievements and make more connections with my fellow students.

Here is a link to the news coverage of Dillan’s graduation speech and full transcript:

http://abc7.com/news/non-verbal-teen-with-autism-gives-grad-speech/96359/

 

Letter from a Teacher

(Written for Enhanced Lit class – 9th grade 10/1/14 – Dillan was asked to write a letter to his parents as one of his own teachers)

Dear Mr. and Mrs. Barmache,

I am Dillan’s teacher, and I have laughed at the idea of having an autistic student in my class until I met Dillan.  Matter of fact, I never thought a student who could not speak and could not control himself would have thoughts at a level of other students.  I’ve been able to get to know many of Dillan’s strengths, as well as his challenges.  I feel that some of the necessary skills that a student needs to succeed are quite evident in Dillan.  For example, he always tries taking a break to allow himself a chance to calm.  And he never quits so long as caring people around him support his attempts.  Also, patience is a quality, and I see having autism must require having an enormous amount of it.  And finally, I see how Dillan really wants to be challenged.  And I hope he always will be.

Sincerely,

Mr. B.

Kindergarten Memories

(Written for Enhanced Lit class – 9th grade 10/9/14)

I acted autistic.  Each day listening to directions was so hard.  The teacher tried to heal my pain with lessons that were simple since she assumed I did not understand.  I essentially appeared to many as an autistic wild student and for that reason alone, it was assumed I can’t have any interest in learning.  Reality placed me in an impossible position.  Yes, I wanted to learn, but the impossible pace of my sensory needs were always winning the battle.  So I acted in the only easy way I could.  The teacher needed to rely on her skills to help me.  I know I was a difficult child and I easily lost myself in my sensory experiences.  The teacher tried to pull my attention and interrupt my love of toys.  How would you respond if each time you had your entire reason for some small amount of happiness taken from you?  I reacted badly.  I learned to manage my behavior as long as I could to earn some reward.  On the outside I learned to have better behavior, but on the inside I was hardly living.  The one thing I learned is that you are either gaining a real perspective about autistic people or a totally different one, and the autism educators today have a lot to carefully consider.