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)

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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.”

 

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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.

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(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.

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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.

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

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Darlene and Katie of REACH with Dillan and mom

Cross Country Banquet

Editor’s note:  Being a part of the cross country and track team has been a highlight of Dillan’s high school experience.  Dillan received a special recognition at the end-of-season banquet and would like to share this in order to show that it is possible to be an equal and valuable member of a class or team.  We thank his incredible coaches and teammates for a wonderful season, and for their ability to see beyond the deceiving exterior that autism can present.

Coach Nance presented this award (we were all very moved by her touching words):

“This award, Most Inspirational, goes to truly one of the most inspirational runners I’ve ever coached.  Their attitude and smile convey more than words can express about how much they enjoy running and being on the team.  They never miss a school practice or complain that it is too hot, they show up on Saturday mornings whenever possible to be right up there running with the pack, and are always ready to go.  What’s most inspirational about this runner is the attitude that consistently shouts, “ALWAYS A GOOD DAY WHEN I GET TO RUN.”  Some may think this runner has a disability, but that is not the case.  This runner has been given a gift; an ABILITY!  An ability to feel what most will never, an ability to remain positive and confident, the ability to listen, observe and not judge.  The ability to speak from the heart with wise intent, the ability to be a true runner, and the ability to inspire with their perseverance and determination to be understood and seen!  The Most Inspirational is…”

Dillan’s acceptance speech:

“Being part of a team of dedicated runners only makes one better.  This season every run I have done has been hard, but not in a bad way.  Wanting a faster pace and time is a goal each of us works to achieve.  In my early days of running I was often alone.  Running was a way for me to get my body in a calm quiet place.  The way I run now almost seems like a dream.  Now I run for myself, not just for the autistic me, but for the runner in me.  In other words, I enjoy it to the point of doing nothing else sometimes.  I so understand that urge to always want to get to the top of that hill or to the end of that mile.  And to be able to do that with a team that also runs with similar hopes and dreams is what I always wanted. Now, I look forward to many more long runs out there.  Go Canoga and thank you!”

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Talking to Debbie during XC meet

CDI 20th Anniversary Gala

(In March Dillan was asked to speak at a gala for an agency that supported him for many years and has a special place in all of our hearts – following is a CDI blog post found at http://www.cdikids.org/dillans-message/ – Dillan’s typed words are in bold)

Dillan Barmache, age 15, recently gave a speech at CDI’s 20th Anniversary Dillan pic
Gala on March 21, 2015.  Dillan has autism and uses a letter board and keyboard to type his communication.  His words were spoken via his iPad.

Mom:  In preparing for the Gala, Dillan had some conversations during which time he reflected on his journey with CDI, and how far he has come over the years. He spoke to Tessa, who was his CDI Floortime therapist when he was 2 years old, and who continues to be an important part of our lives to this
day.  Tessa knows that for Dillan, the relationship comes first.  She asked him to speak a bit about relationships and being treated with respect:

“Therapists have allegiance to certain approaches that may limit them in their ability to heal.  A relationship-based approach that deals with emotions in a patient and connected way is a far cry from what many autistic people experience.  A really intimate and messy relationship is by far the most liberating and healing of all approaches.”

What do you remember about those relationships – the good and the struggles?

“A lot of therapists tried to help my family and me.  It was not easy though.  I was so overrun by my sensory and emotional feelings that all the work was hard to integrate into my mind and experiences.  My family also tried almost every moment.  I am a way better person all around because they loved me even if I could not integrate the risk of connecting with others.”

Mom:  Our family was better able to be there for Dillan because we were so well supported by our team at CDI.  Dillan shared with Debbie, his school communication partner, a bit about how the therapists from CDI worked with him:

 “It was really nice.  They sensed that I needed a lot of movement.
Getting calm was impossible.  Can’t keep a desperate to move child still enough to do a gaining a skill activity.
Hard to get my attention.
Hard to hold me.
Hard to keep me engaged.
And getting me to stay was so hard.
And really sad each time they left.
Reality that I laid in massive autistic pit.”

Mom: You’ll notice that Dillan’s response is a bit choppier here.  The fluidity of his thoughts and communication may vary depending on his internal and external environments.  Nevertheless, his words are powerful.

When asked more about his CDI memories, Dillan shared:

“A lot of sensory going to attractions that pummeled my ability to connect to others.  When I was eating and tasting much of my world some people saw a child who was not able to connect, but the people at CDI entered my experience with respect and did amazing work with the child I was.  Remember I am single-minded and so much of my early experience was tasting my world, and sometimes I could be really difficult to engage with.  The therapist had a lot to do with whether or not I could build a neural connection with them.  A few therapists deny much of what has been said before by other autistic people, not cause they are being stubborn, they have no relationship theory to help them find a real way to connect with a sensory child.  The therapist with a total developmental approach and a relationship mind has all the tools they need to get a connection with the child.  People really need to know how much I wanted to connect, but it was impossible.”

Lastly, Tessa asked Dillan what he would like people to hear.

 “Am really not sure people can get it.”

Tessa encouraged Dillan to keep saying it and planting the important seeds!

“A really huge message is sometimes impossible to allow words to even describe it fully.  Hard to put words to a life that has transformed.  Let me say that gaining a really healing relationship is rare and hard to find.”

“A level of understanding that I am whole in mind and that having autism is hard enough.  Attitudes are based on theory and what people see.  I am quite autistic, appearing as if all I can feel is bad behavior and limited ability to feel for others.  A hard thing keeps people convinced that we don’t want love.  Autism feels like a person is on the outside who has been made out of props and is controlled and influenced by every sensory need.  Inside of my mind I am in control with the rest of the world, but most of the world is oblivious to make the most of my efforts.  Yes, really hard to believe us that we can have an effort to connect.  I needed a group of people who had an ability to see my efforts to connect and who could do the same.  I am sad I had so many people in my life trying to make me learn, when all I ended up with was harm.  Feel I needed help with my sensory system and emotional regulation. All the people at CDI cared and I felt understood.  Anytime I am allowed a total use of sensory integration with communication, I am peaceful.”

Made it through 9th Grade!

Been a year since I graduated from middle school.  Hard to believe I made it through 9th grade!  In all seriousness, I really had a lot of worry about the reality of having to take all regular classes.  Taking all my classes was a major challenge, and one I am happy to say I feel proud of.

Cross Country Meet

Written 10/3/14

The only thing that helps me calm my body is running.  I really need it like air.  To be a part of a really amazing group of people which also have running in their hearts is like nothing I have felt before.  So a few days ago I ran in the first cross country meet.  That day I easily thought about not running, but then I realized that I had the opportunity to just try.  Having the practice and support from the other members of my team behind me motivated me to try.  In some especially strange way, their support allowed me to dare myself.

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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.