Damon’s discourse

Having friends like Damon is a blessing. While we have only met in person once, briefly, love and appreciation for each other engraved that moment in me forever.

Cool and brilliant Damon, take is away…

I would like to thank my friend Jordyn Pallett for proposing I write a post on his most excellent blog. I am honoured to have been asked.

My name is Damon Kirsebom, and I am an 18-year-old guy who types in order to communicate his thoughts. I began on a letterboard three years ago, and have realized my dream of participating in decisions which affect my life. It doesn’t seem much to ask, yet, for 14 ½ years I was unable to express even the most basic thought.

As Jordyn has so eloquently explained, many non-speaking or unreliably speaking autistics must overcome tremendous challenges in order to move as they intend. I am no exception. Even my mouth has little connection with what I would like to say. In my years of intensive therapies, I was prompted to learn scripts which were meant to facilitate social interactions. For example, I am embarrassed, at my age, to be unable to prevent myself from loudly repeating, “The little pool is fun”. This occurs every Thursday, as I used to go to the pool with classmates every Friday. The thing is, these words were practiced to “mastery,” and this neurological pathway has become difficult to extinguish. Being unable to stop myself from repeating such scripts is humiliating.  Most people believe my speech is intentional, and make assumptions about my intelligence.

Lack of movement control is what I would say is the core of my type of autism. In spite of this, I am an athletic person. I have learned to overcome many impulsive motions in order to build more intentional movements. For example, I learned to ride a bike when I was five, which is probably pretty average for any kid. I know that some professionals who speak out against people who communicate as I do would see my bicycling ability as proof that I do not have movement challenges. I disagree. My dad taught me to steer and pedal for years prior to my first solo ride. What many critics do not understand is the difference between novel, intentional motions, and movements that have become automatic through repetition—and are sometimes performed impulsively. Further, being unable to perform an action is not necessarily due to lack of desire, or lack of understanding. As Jordyn has stated, slowing down practice of novel movements leads to greater control of intentional motions overall.

Probably the biggest misconception about people like me is the idea that intelligence can be measured in the same ways that were developed for people who speak, and who do not have movement challenges. These movement differences are confused with lack of understanding. For example, in my therapies as a child, I could not advance unless I could demonstrate my knowledge trial after trial.  People were confused by my impulsive movements. When I would master a skill, I was thought to have finally grasped the concept, rather than the truth: my body finally learned to respond correctly to a task my mind understood the first time. These days, typing enables me to demonstrate my abilities in academic subjects. I am limited only by people who make assumptions about me without having met me.

I share these thoughts with the hope that I will make a difference. Going forward, I intend to advocate with and for people who use spelling or typing to express their thoughts. I am grateful to the many people who stand with us, despite the criticism. As technology advances, I look forward to the time when my thoughts will spill out on command as I think them. In the meantime, I will happily type my words.

Damon Kirsebom

Hope you love Damon’s sharing as much as I do. Please give this bloody, and mighty, intelligent dude some shouts out.

Jordyn

20 thoughts on “Damon’s discourse

  1. Shelley

    “When I would master a skill, I was thought to have finally grasped the concept, rather than the truth: my body finally learned to respond correctly to a task my mind understood the first time. “ Beautifully said , Damon. My wish is that more people could understand this. Keep sharing your thoughts! I hope to meet you one day. Any friend of Jordyns is a friend of mine. 😍

    Liked by 2 people

    1. I love that line too Shelley.

      Too often instructions are repeated to me over and over (not by Mom, but by professionals), rather than assisting my body in executing the requested movement so I can make the connection between brain and body.

      We are currently working on deep breathing to help me project my purposeful voice versus whisper. It is taking a lot of creative thinking and variation to both do it, and feel it, so I can reproduce it and ingrain it. Way harder than a movement like kicking or pointing because Mom can’t physically show my belly how to fill up. I will get it though.

      Liked by 1 person

    2. Angela Knight (Katie's Cousin in BC)

      I have had the amazing privilege to meet Damon a few times, and although we have not yet had the time to have a full discussion, I look forward to it in the future. His mom is helping a boy that I work with to learn to S2C. I am hoping to learn as well so I can be his FC in the high school where he attends and I work. I have been an EA for 6 years and have always been fascinated by the children I have worked with that have autism, I have always believed in their intelligence and sometimes was met with opposition because of it. I am looking forward to proving many of them wrong! Thank you Jordyn for your blogs and for allowing Damon to share his thoughts, you both are truly amazing individuals! And you both write so eloquently, such a gift 🙂

      Liked by 1 person

    3. Angela Knight (Katie's Cousin in BC)

      I have had the amazing privilege to meet Damon a few times, and although we have not yet had the time to have a full discussion, I look forward to it in the future. His mom is helping a boy that I work with to learn to S2C. I am hoping to learn as well so I can be his FC in the high school where he attends and I work. I have been an EA for 6 years and have always been fascinated by the children I have worked with that have autism, I have always believed in their intelligence and sometimes was met with opposition because of it. I am looking forward to proving many of them wrong! Thank you Jordyn for your blogs and for allowing Damon to share his thoughts, you both are truly amazing individuals! And you both write so eloquently, such a gift 🙂

      Liked by 2 people

    4. My son (8) has been using typing this past year at Nova’s Ark to help him communicate his intelligence. His confidence has grown by leaps and bounds. I worried that typing might hinder his ability to master handwriting and have struggled as a parent if I should advocate for more printing than typing to help build those hand muscles. But this has given me a different perspective. I never really thought that I might be actually causing him stress by wanting that skill for him. That just maybe he ‘cannot’ make his body cooperate. It’s been something I’ve stressed a lot about – what is the right thing to advocate for. Your blog made a difference for me in understanding my son perhaps a little better in this aspect. I’ll focus now on him being able to communicate his thoughts first versus the way he has to express them as the goal. I know it probably sounds simple and that I probably ‘should’ have gotten this before, but I didn’t. So thank you for writing your thoughts. It will make a difference for my son and has already for me. Please keep sharing as I’m sure there’s other parents/people out there who can’t see these aspects and can learn to advocate and better understand from information like this.

      Liked by 1 person

      1. Erin, this is Damon. I agree with your idea that handwriting can wait. For me, communication, regardless of method is most urgent. I learned to spell on a letterboard, and my life immediately improved so much! Then, once I began communicating, I began working on typing. Words are words, no matter how they are expressed. I wish your son success.
        Damon

        Liked by 1 person

      2. Erin,
        Thank you for sharing. I’m so glad that hearing Damon’s words could make that difference for you and K. My idea to have other voices share here this month paid off big time. Self-expression IS the most important thing.
        Jordyn

        Liked by 1 person

    5. Julie

      Absolutely a truism…. my daughter has autism as a symptom due to a gene misfunction and is intellectually challenged… I always said she has a lot more inside her but lacks the ability to get it out and u can’t test her because of that… numbers aren’t a reflection of her true intelligence and abilities. Keep proving the point Damon!

      Liked by 1 person

      1. Julie, this is Damon. I really understand your worries. I would have scored in the “well below average” range before I learned to spell, and then type my thoughts. Please have faith, and believe your daughter can learn, just as Jordyn and I have. Thanks for your message. We are all together in this.
        Damon

        Liked by 1 person

    6. Shelley, this is Damon. I so love your response to my message. I really hope to spread the word about our beautiful group of brilliant communicators. The real problem is the idea that most people believe without question: intellect can be observed. Well, we know first-hand that our minds can only be understood if we can communicate fully. I am your friend now, Shelley.
      Thanks,
      Damon

      Liked by 1 person

      1. Jordyn, this is Damon. I am trying so hard to speak , too. It is amazingly difficult to coordinate all that goes into forming words with intention. Thanks for making such an excellent blog which educates others in the challenges we must overcome in order to communicate.

        You friend, and kindred spirit,
        Damon

        Liked by 1 person

  2. Angela Knight

    I just wanted to clarify that Damon’s mom has told me that she has not taken the course yet, and would like to when she is able. I have looked into it myself and I wish I could take it but I am unable to afford the travel at this time. She is showing me what she did with Damon and telling me the science behind how S2C works and how it is an easier form of communication for most non-verbal, unreliably verbal and minimally verbal people with autism. I still have so much to learn!

    Thank you.

    Liked by 2 people

  3. Alyssa

    I’m in tears. I worked with differently abled people for years – this just blows me away. Truly, you are a fabulous human. Looking forward to hearing more from you.

    Liked by 1 person

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