Crazy Impulse Firing

Can not stress enough our inability to control impulsive motor actions. I think this is something it takes a while for everyone to get. Being that the lightbulb easily fades and people fall back into the past thinking that I/we are in direct control of our bodies.

Just imagine for yourself being given a thankless good intentioned body and mind, and you can’t quite the body to move with your gorgeously intelligent and intricate brain. Just darn frustrating. If you use everything you have you can get it to do this one thing that gets you big attention and what you need. You use it because it works.

Each time you use it, it gets easier because that pathway is getting lots of traffic and it is grooving into your brain. It becomes a wickedly fast highway. Going highway driving is easier for the brain than grooving a new path, so when good new path is what we want to groove in, we need assistance making sure our brain doesn’t jump on that highway.

The only way to learn any new motor task is to slow everything down, in a non-threatening environment (impulse can’t resist a perceived threat), while bringing pleasure/success to the activity. Joyful purposeful motor practice makes permanent.

Doing purposeful motor actions gets my brain out of its constant state of fight or flight and into a state where it can powerfully learn. Joy is calmly learning, growing, and having my intentions realized.

Jordyn

Image courtesy of Medium.com

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Ian about Inclusion

My pal Ian has calcuably the grandest vocabulary and eloquence in his writing. Big props to him for this piece. Inclusion is important and I wish it wasn’t a necessary word because we should all just be accepted for who we are.

Let’s listen carefully to Ian’s message.

Thank you to my friend Jordyn for inviting me to write on his blog, as a guest this month. To think that I once wished I could spell as well as Jordyn, since he was more skilled and further along the path of communication than I was when we met two years ago! And now I am here totally rocking the words like him. The words have been unlocked inside of me and the encouragement my fellow spellers, like Jordyn have given me, has been tremendous.

My work since I began communicating by spelling has been to get myself more purposeful as far as my body can be. This includes things like typing, working on my handwriting, my speech and more challenging physical activities like rock climbing and martial arts. With regard to others like me on the spectrum it is so worth the time to work on skills and activities that have meaning and purpose and make us feel useful, capable and human.

My current message to the world, with the autism community in mind, is focused on making sure to stress inclusion. I want to move beyond awareness and acceptance into fully participating in my relationships with my family, friends, and society. So, to that end, I ask that my dear allies and neurotypical friends work to actively create ways to include autistics in the mainstream world.   What does that look like? Well, some ideas that I have are:

Take the initiative to talk to us, reach out, suggest activities and find ways to alter and accommodate the hobbies and every day things you do to make it possible for us to join you. There is a movement toward inclusion, but I think there is a tendency to “dumb things down” for people on the spectrum. This is frustrating and ineffective. Respect our inherent potential by presuming competence and challenging us. The success of my learning to spell on a letterboard came from my mom and other teachers strongly initiating and challenging my brain and not shrinking from the task when faced with my totally unruly body.

The motor challenges of my autism make it really difficult to initiate and perform the most basic tasks. This is true for many on the spectrum. But our brains are neuroplastic wonders and can make new and strong motor pathways toward speech, more coordinated movement and others goals like independence and greater self-determination. This is where the necessity of being challenged comes in. What muscle grows big and strong without being progressively challenged with more weight-bearing exercises? So too does a human brain need healthy engagement and challenge to grow and develop.

Too many people on the spectrum are not given opportunities that will help with and encourage full participation in life, especially if we are nonspeaking. We are assumed to be mentally incapable. I believe we are all capable but some of us need more patience, consideration, perseverance and hard work to get there.

In closing, here are some examples of ways my family, friends and neurotypical allies have not only included me in meaningful ways, but have also contributed to my continued growth and development:

  • My friend Amy introduced me to a cool guy named Taqqee and he is teaching me Silat, which is an Indonesian style of martial arts.  I love how Amy thought to take the initiative to set up training with Taqqee. So far I really love the style of martial arts. It feels good because I get to master strength and control of my body.
  • Amy is also helping me learn to care for and play with her dog Olivia. This is so helpful because my body tends to freak out around dogs.
  • My Aunt Debbie has always made an effort to include me and spend time with me. She lives an hour away from me and we decided to do a book club through the mail. So we picked a book to read and began writing back and forth to each other about our feelings and thoughts on the book. This has been a special project. I loved the time my aunt dedicated in sharing her thoughts in writing to me. I am grateful to have her letters as keepsakes. It was also wonderful to share my thoughts with her.
  • And finally, my mom continues to create inclusion at home for me by adapting activities with my dad and siblings.  Recently we began to play Dungeons and Dragons role playing game. This is a very involved game that gets players enacting a story as fantastical characters on an epic mission. It would be way easier to act out my character if I could speak, but I participate with my letter board, roll my dice in battle and listen to the story as it unfolds through my mom the Dungeon Master and the other players. It is harder for me, but so worth it. I really get to be part of this game and it feels good!

Thanks for reading my guest blog. I hope it inspires you to action.

Love, Ian


Way to go Ian!
For more from Ian, follow his blog at
https://unlockingmypotential.blog/ .

Jordyn

Introducing Nicholas

My buddy Nicholas has one of the hugest hearts I’ve encountered. I am honoured that he chose to guest blog and hope he will bring more of his deep thinking, caring wit, and passionate advocacy to the table. Silence is not a place where his brilliance should remain. Without further adieu, I give you Nicholas!

Nicholas is my name and spelling is my game.  No man nor woman should be able to take my voice away.  They have taken away my letter boards but cannot silence me.  I am really making it hard for them. No one should have to go through this.  No one has the right to say that spelling can’t be my method of communication. Have I the same rights as everyone else? Not having these rights is allowing people to treat me badly. I deserve to communicate in the way I know best.  Each day I will fight for my voice to be heard.

– Nicholas,
No Nonsense Dude and friend to one amazing guy Jordyn

I will make sure Nicholas receives your comments and shout outs, so show him some love folks.

Jordyn

Elliot Expresses

Good gracious, my friend Elliot is one with a way with words. Please listen to his brilliant message! Elliot, I’m darn proud to call you my best friend.

Hope you enjoyed that great looking guy’s words of wisdom. I will make sure he gets your comments.

Jordyn

I am so happy this exists now.

Do you have question about what living with non, minimally, or unreliably speaking autism is like?

Do you wish you understood more about non, minimally, or unreliably speaking autism?

Well, I 100% recommend reading this book. Lia does a fantastic job of capturing our experience through interviews. Each chapter targets a concept and dives in with an autistic being interviewed and sharing their experience.

It will be time and money well spent. You may recognize a few of the autistics interviewed – me, Graciela, and a number of our peers.

Given this is Autism Acceptance/Action Month, I’ve asked a number of my peers to guest blog. I am excited to introduce you to these amazing humans. Let’s be a welcoming listening as they share with us their experience of life.

Jordyn

Hard to Explain

Good 100% ingrained skills are joyfully easy to do. It is the learning of new purposeful motor activities that can be so draining.

I learn with my whole body. I learn with my brain, but it doesn’t always turn the knowledge into an appropriate action. I learn through practicing the motor activity over and over with less and less outside support. Draining learning becomes automatic actions requiring minimal assistance.

It is a labourious process to gain mastery over my body to be purposeful not a victim of my impulses hijacking me.

I do want my peers to know you can do anything you set your mind to and practice.

Jordyn

Getting stuck is lack of body control too!

Many think lack of body control means sudden jerky movements, stimming joyfully without end, or crashing in a blaze of tantrum-like glory when overwhelmed. Blatantly, they forget that control means initiating movement purposefully.

I lack the independent ability to initiate many tasks. Some examples are: belting myself into my seat in the car; un-belting myself from my seat in the car; putting my boots on at the door; joyfully putting the password, which I know, into any device; or getting dressed. I know how to do these things and many more, but my apraxic body gets in the way of demonstrating this.

Thankfully, my parents and support team understand this and support me 100%. They support me with verbal or gestural prompts, letting me build the pathways in my brain to get to independence. Over time we fade these prompts as these things become purposefully initiated and performed by me. Always these supporting prompts come from a place of knowing I know how to do these things, and am stuck.

Another tool we use is having me give my body the prompt by spelling it out on my letter board. 100% joyfully this works, and I get to be in control. But, in -20 degree (Celsius) weather a verbal prompt from Mom to “get in the car” is appreciated.

Coming from a loving intentional and patient place in your heart, I will always appreciate your respect and support to get my body unstuck. Throwing in a bit of playfulness, and wonderful variety to your prompts can’t hurt either.

Jordyn

Good behaviour is a fallacy

Lots of people seem to not be understanding the motor-sensory difference of people like me. This especially shows up where they have been taught, and subsequently could only see evidence of, a cognitive deficit being prevalent in non-speaking autistics.

“Just wait a minute. You mean that there is no cognitive deficit?”, some may be thinking. Yes, that is what I’m saying. Non-speaking does not mean non-learning and non-listening.

Our bodies do not respond the way a typically wired body does. Impulsive actions are what we must live with having little control over. They fire when they are stimulated by a trigger which ranges from a hang nail to the biggest emotions you can think of.

Let’s imagine totally mundane trigger so that you can really get this. Imagine you are used to being able to listen to a really great podcast on the way to work, however something happens to your phone and it just won’t play. Just think of the impulsive reaction you have, and the time it takes you to settle. Now amplify that by 50x and add in some fun action like hitting the steering wheel. You know none of that will make any difference but you can’t help yourself. Welcome to a sneak peak into your world every moment of every day.

Our life is a blend of moments of purposefulness that are interrupted by a nonsensical hijacker. Lots more I could say, but I will leave you with that image to ponder with one additional thought. How triggered would you be if people interacted with you like you weren’t intelligent enough to read this blog?

Interaction on this topic so welcomed! Let’s put this misnomer to bed please.

Jordyn

Remember, good vibes only?

Glad I am getting better at dealing with the energetic and emotional soup I wade around in. Living in the soup you begin to become a fish in unclean water. I wonder sometimes what clean water would feel like.

I think it is getting easier because I let the waves flow through, where before I latched on with my compassion and wanted to assist. I still sometimes lose control when faced with a strong negative emotion all of a sudden.

I can now express my need to leave the situation before it becomes too impactful. Knowing the emotions and energy aren’t mine definitely also helps. I very much used to lose it out of a fear about what I was feeling. My body’s reaction was powerful and overblown given the situation. Fight or flight reaction taking over and hijacking higher purposeful cognitive thinking and control.

Each time always gets easier,
Jordyn

Link to original “Good Vibes only” post from January 2017.

Do you get butterflies?

by Graciela Lotharius (in italics) and Jordyn

Teenagers are too dreamy!
Can’t explain the bliss of a kiss.
It’s beautiful to share moments so sweet.
Joyful to hold hands, go for iced cream, and watch movies.

To me the attractiveness blooms in every moment we are together.
My love blossoms as if joyfully a bud becomes a rose.
My love truly is infinite.
I love you to literally the stars.

Doing things as a couple is the truest joy.

Being two peas in a pod is beyond butterflies.
I think these days have truly been our BEST yet.
Just can’t even think about going home. Not going to think about it for another day at least.

Trying to hear with my heart these last couple of days.
Hearts hear each other louder than ears.
J, How do you want to sum this up?
Love is all heart and actions to express it.
We’re thankful these good days totally show that.

  **Please find more from Graciela at daretolisten.org**