All the Things I Kept Inside

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This post has been tough to get out. I am a careful guy who thinks about perceptions and wants to get just the right one out to readers. Can you imagine that I am a nonspeaking autistic who can actually have that option? It’s been a long tough road for me. You see, around this time last year, I had felt the reality of my future like never before. Still so many things to do, and yet fear gripped slowly through my soul – that the movement towards my future was already halting. The facts would not change. The accomplishments would always nicely exist like some trophy locked away in a cabinet. I had shared in graduation activities like other students, had fulfilled all of the classes needed to get that diploma, sorted the daunting college application experience enough to be accepted into one, and yet I really felt nowhere near ready to step onto another path that would take me away from all I knew. It was summer 2018 and I was already unraveling.

Being autistic is stressful enough. I had so much on my mind that having to think about things like funding for my support person to be able to go with me to college was almost more than I could handle. I got intensely nervous. It is hard to not have those feelings when someone else is deciding your future. The process involved an assessment and report writing, and then I had to wait. I hated the long wait.  It took many weeks, months really, until I heard that I had gotten the authorization for my much needed support person.  Hope flooded in. I had it all in a way, the acceptance of a college, the funding for support, yet I did not feel it was right that I was only one of just a few of my autistic brothers and sisters with this opportunity. There was this pressure that I had been feeling for a while. It was the pressure to try to attempt to set a precedent. I almost started to hate that I got in.

I had this idea that people in college would really be somehow able to see me. That the autism that controls my body would somehow not paint the usual picture of special needs. I looked forward to an ideal situation in college – it had to be better right? After I started classes, I began feeling the pressure, and I worried I could not keep up the pace I had set in motion for my classes and running life. There was a new level of expectation. Being a Kingsman meant running and training on a whole new level. I got up early to get to campus, ran hard in the afternoons, and even ran some mornings before class and got really strong. To the outside world I looked like I was managing it all. Inside I was really struggling. The feeling of not failing crept into my mind. I got harder and harder on myself. I got so lost in the schedule of going to hard runs and typing for all my classes that I forgot who I really was inside.  Mostly, I got stuck on my ideas that success had to be achieved at all costs. The idea of really allowing something to naturally evolve was not an option in my hectic schedule. I had intentionally set these things in motion and I needed to follow the path of least resistance – any accommodation in my schedule meant not having it all. I got totally overwhelmed. Things felt manageable on paper, but in reality I got too worn down, and that is when I knew I had pushed too far. I experienced a type of autistic reaction to my internal stress.

In the spring semester, I became greatly stuck in autistic modes of movement. I felt the pressure of my life crush in on my high spirits and I felt intense pulls so strongly that I could not help becoming lost in my patterns. I felt like I was transformed, but not in the way I had hoped. I was turned back into the trapped boy behind autistic walls that could only hardly be broken open with my team. Instead of running with the track team I had to stop. I even became injured which made all running impossible for many weeks.

The system out worked my whole reality. It was set up perfectly for someone who is neuroliteral*. The way students normally start to seek out support is they look to each other, but that option isn’t there for autistics like me. The reassurance that I so needed was nowhere to be found. I needed to know that I really could acknowledge my struggles and fears, and that others wouldn’t see me as a failure. I wished for reassurance that I was not the only one.

Then, my year was over. I was nervous to see the results after such a challenging time. My grades were fine in the end. I had come out the other side. Some of my strong autism is going back to sleep, but not all of it. I am still recovering from the stressful months. I can run again now. I think that will help me heal inside. I am wondering what will happen in the fall semester. I have had a great successful semester, and a very challenging semester. I don’t know what the next one will look like. I don’t know whether to hope or whether to worry.

*Neuroliteral is my very own word which means having a typical thought process along with neurology that is nonautistic.

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Running Toward Myself

I have experienced many challenges in my life with the autism, that takes root in my actions, my thoughts, and my feelings. However, I have also been blessed with gifts, and I am going to talk about one of them today. I wrote this essay for my college applications, and it means a lot to me that you will also read these words about the times when I can leave my autism behind.

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Running Toward Myself By: Dillan Barmache

It would be easy to write about autism. I always have that inspiring story in my pocket, The Boy Who Had Autism and Learned Anyway. In this moment, however, I want to talk about the moments when I can separate myself from autism, even if it is only for a short time. Those moments come when I run.

I am on the cross country team in the fall. I run track in the spring. I wake up early in the summer and run miles just because I want to. I am fast and my legs are strong. My body moves with certainty and obeys my commands. That means more to me than it does to many others because in almost every other moment of my life my body is a mess. The chasm between what I want my body to do and what it does is huge and everyone who spends more than five seconds around me can see it plainly when I run my hands through impulse patterns and babble in nonsense noises. So, when I run, those moments of control are like air to the drowning man. My body goes exactly where I want it to.

My most ambitious event was the time I ran a half-marathon with my dad. He and I trained hard. This was, after all, the longest run of my life. As we trained my dad would strain to keep pace with me. I would wear him out with my voracity for the trail, eating up the ground beneath my feet. We trained until the day came when we had to go to downtown LA and put our feet to the pavement.

You could think that a run like this would be easy. I’ve established how I love running, I’ve talked about being good at it. However, I have so much more to consider when it comes to an event like this. I would be surrounded by strangers. I had to sleep near the event in a strange hotel room with none of my familiar comforts. My routine was crumpled up like a piece of scratch paper and tossed away. To a person like me these are major, catastrophic concerns. My parents have to constantly wonder how I will react. Will I be able to handle it? Will I break down and freak out and have to be pulled away into a quiet room where the stranger’s’ eyes won’t see my weirdness? I felt not just my own anxiety, but the anxiety of my parents as they tried to plan for every problem and prayed for the things they can’t control to just go smoothly.

Just before the marathon the runners gathered at the starting point. The buildings of downtown LA loomed over me. They closed in like giants and all of us gathered runners were packed in together. I did feel the energy getting wild inside me. I felt my control slipping. I felt the autism that wanted to take over and become everything my parents and I feared. Then, the signal came and it was time to run, and none of it mattered anymore. The threat was over the instant my legs started moving, because then I knew exactly what to do. Run and run and run.

I finished the half-marathon just like the waves of people around me did. I was part of them and I fit seamlessly among them. You can’t imagine how rare that is for me. I am always either the odd boy off to the side with special needs, or I’m the miraculously intelligent boy everyone is shocked can do anything but flap my hands and repeat simple words. I’m always different. I’m always other. But when I ran that day I was just a runner. I was just Dillan.

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I am a runner

(On February 14th, Dillan and his dad, Randy, ran a half-marathon relay in the LA Marathon. Here are some of their thoughts about it…)

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Dillan:

It’s a huge task to run a marathon. Not a huge task for someone like me, but a mighty task for any person. I did it alongside so many people banded together by the mighty task. We all ran and we all became no one thing. I was not autistic running, I was only running. I was among thousands of people like me, not because they had some neurological problem, but because they were doing a simple, normal thing together. Any other time, I am a standout. I have noises. I do weird stuff with my hands. You know that because you are reading this blog by the amazing kid with autism who actually can have thoughts too. But in the marathon, I was only a runner like those others, and I crushed it!

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Dad:

So the LA marathon finally came and went.  The weather turned out to be perfect and not too hot as they were all projecting.  Dillan was calm and collected the whole morning and seemed really ready to run.  We started our half of the marathon after our friends came in with a great time in under 2 hours.  We congratulated them, took some pictures, and then headed off to join the pack for the second half.  Dillan was amped up and went out hard.  I had to keep telling him to relax and pace himself.  We stopped to walk only for each water station to make sure we stayed hydrated.  Dillan kept a very steady pace and didn’t waver a bit until maybe the last mile.  He started losing focus and tried to walk, but I would not have it.  I encouraged him to keep going as the finish line was in our sights.  We ended up crossing the finish line arm in arm.  When it was over, the official time clock showed 3:43 for the whole marathon.  My Garmin showed we did 13.1 miles in 1:46.5 at an 8:13 average pace.  That is by far the fastest recorded time for any distance over 10k for Dillan (and myself for that matter).  I was so proud of him and he was even smiling right after crossing the finish line.

(Chocolate milk is the best “recovery drink” and Dillan loves it!)

 

 

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

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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