Leave your idea of a good time…

I have been to many gatherings. 100% I have started to work out what types of things I can and can’t participate in. I share my findings with you as information you can bring to conversations with your autistic family member or friend.

My ideal gathering is small, intimate, and unstructured. Joy is hanging out with pals, even if that means we talk a little then we do our own thing for a while. Joy is just BEING with them.

I live for deep discussion and joyful silly banter. I love to empower others to share their thoughts as we don’t often get to do this with our peers.

I think sometimes parties are created as my peers and their parents so need to have that “typical” event. Love my pals who keep their parties simple and loose so everyone can participate as they wish and as they can.

I think it is essential to get clear about what your autistic family member or student truly wants. We want our parent to be happy because they do so much for us. Your suggestions of event ideas are thus lovely, but maybe not going to result in the party we want. Luckily my mom is always checking to ensure I am not people pleasing.

Let’s empower our peers to express their true wants and not people please to take care of their parent’s wants to give their kids a typical party. Who is that really about? Just saying.

Listening powerfully,
Jordyn

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Can we care to include please?

Not all Communication Partners (CPs) are made the same. I have watched interactions in a number of settings and have some notes for CPs.

Are you there with your student to provide them partnership so they can participate in events for them? If you defensively say “yes” look again. Many times I see my peers being given opportunities to “speak” only when they are addressed. They deserve the respect of their CP to look for every opportunity to participate in conversation. CPs look at where your attention is during peer events and stay on task.

Let’s get real. I can make some actions that indicate I have something to say, but if my CP is otherwise engaged then they are missed. Luckily my main CP is very in tune with me and her job, so rarely is an opportunity missed.

How about we play the imagine game, so you get in our shoes for a minute. Imagine you have been invited to an outing with your pals. You can only “talk” or participate in activities with the support of a partner. No partner and your body wanders and stims. Joy is participating as “normally” as you can!

Would you want a CP that is on point or distracted by everything and everyone? Would you want to wait for someone to ask you a question or would you want to strike up conversation with your pals? Would you want to listen attentively to your pals or wander off stimming?

I know the job is a big one, but I implore you to look at yourself as CP and keep upping the level to which you disappear and are only an extension of your speller. Instead of wishing your student could participate more, get out of the way and cause it. Changing your own impulses may by challenging, but if we can do the work so can you.

Sorry to be so straight about this, but you didn’t do the work for your student to have a voice only when you think they should. Be a good partner and shift your habits. Let your speller’s voice be unleashed.

Respectfully,
Jordyn

P.S. To my peers, keep advocating for your voice!

Let’s be creative and Autastic!

I love that my peeps want to contribute to this blog I’ve created. Asking for submissions and allowing people’s self-expression an accepting and eager audience is so darn fulfilling.

I truly am inspired by this dude. Autastic Tom is the coolest and I hope you take his words to heart.

There is a huge misconception that many people have about autistics. That we absorb all kinds of factual information, but can’t, or don’t have the desire to express ourselves creatively or artistically. This is far from the truth, at least for me and the many autistics I know. Sure, it may be easier for many of us to spout out facts about our favorite subject than it is for us to write a poem, but that does not, by any means, indicate a lack of ability or desire. Acquiring the ability to express myself creatively has improved my life in many ways. Having a creative outlet is a way for me to convey my feelings and emotions in a healthy and appropriate way. Instead of letting them bottle up inside of me and burst out at an inappropriate time.

One of the ways I express myself creatively is through making videos. Over a year ago, I decided to start a YouTube channel, Autastic Tom. It has been a great way for me to deal with my emotions, all while advocating for myself and others with autism, and hopefully serving as a source of encouragement for autistics and their families. It is important, though, that people know that many hours of work go into making each video. This includes time spent brainstorming ideas, writing a script, planning and getting any needed supplies, practicing, filming and editing. Only the best clips are used in the final production. This is a long, tedious, and often difficult process, but it is one that I always feel is worth it. It is therapeutic for me to release my creative ideas and emotions, and also extremely rewarding when I am able to help others.

My most recent creative challenge for myself is to write an original piece of music. Playing music that I have heard before comes quite easily to me, but coming up with an original tune is a challenge. I encourage everyone, not just autistics, to challenge themselves creatively. It is a healthy practice for everyone. And for family, educators, and communication partners to be patient and encouraging, knowing that for anyone, difficulty or frustration with something rarely suggests a lack of desire. 

– Tom Pruyn

Check out this episode of Autastic Tom…

… now you get why he is the coolest! Subscribe and continue to enjoy his creativity and greatness. One day I will be this cool (wink).

Jordyn

Onward to Trusty Dads

Moms usually bear the initial responsibility to be a fluent Communication Partner [CP], with caring dad’s hunting and gathering for the family. But what son or daughter doesn’t want to a fluent relationship with their father (and siblings too)?

Joy is chatting with your family with no extra CP needed. Let’s look at some fun ways for family to develop fluency beyond doing sit down lesson!

Can’t say enough about how a dad sharing about stuff he loves and is motivated by lets good student have loving connection while Dad builds his skills. My crazy engineer Dad loves to talk geeky stuff like electricity, magnetics, calculating how to calculate the circumference of a circle, and goofy historical facts. Throw in some “known” questions (facts in his epistle), add some “semi-open” (like synonyms, rhyming words, or something from a list of factoids), and good dad is on his way while having low stress fun times with kiddo. Same goes for siblings or friends.

Family games are another opportunity. Playing Uno, Battleship, or Apples to Apples and likely some other games I haven’t played are a tight field of “semi-open” choices letting that partnership skill be built in a fun way. Confidence too!

Dad and I also play video games that are like a puzzle we navigate together. Where I have the motor control to move our man I do, where I don’t I tell Dad what I think he should do. I am getting better control with the Xbox slowly. This is another tight field of “semi-open” to practice with.

Reading stories together is another great option. Going a couple paragraphs then creating a really easy “known” questions lets partnership, trust, tolerance, and motor control be developed in a fun, easy, natural way.

Joy is building communication partnerships with family. Yes, formal lessons are the bread and butter of creating these. The above examples are the peanut butter and jam. You can’t have them without the bread though.

I hope these examples have sparked your creativity and out of the lesson box thinking to add more joy, variation, and opportunities to building familial communication partnerships.

Jordyn

(image: Photo 32969367 © Karenr – Dreamstime.com )

Let’s Talk Regulation and Communication

Before fluency caring Mom did not know a lot about my body impulses and how they fire all the time. She had an idea from talking to others on their own journey, but just didn’t understand my firing system fully yet. I fire impulsive scripts in my head constantly. The Wiggles, Baby Einstein, Blue’s Clues and Boohbah blew destructively through my opportunities to be purposefully in communication with her at the start.

Just one impulsive firing and off I went spelling a familiar word like “winter” when I meant “with”. Fully being fluent meant my body had to get that when we are together spelling it would not be able to just hijack my communication at every whim.

Learning this kind of control in a partnership is like baking a scrumptious chocolate cake. Good organic ingredients of: cool lessons, beautiful authentic calm, loving intentional prompting, and a dash of fun are combined. The body tastes that batter and craves more of it, as it gets more familiar with the peace associated with purposefully pointing to communicate my answers. But, it takes the consistent heat of the oven to have fluent conversational communication.

Chocolate cake baked to perfection changes the dynamics of life. A good loving baker knows that without the proper mix of ingredients and the consistent heat of the over, that cake won’t rise to its fully scrumptious and flaky potential.

Can’t say enough about how the baking process is individual. Different for each student, and with each of their partners.

For goodness sake, please don’t compare your journey to anyone else’s. Just get in the kitchen and create your perfect cake as a team.

Now I want cake,
Jordyn

image ID 143248400 © David Cabrera Navarro | Dreamstime.com

Let’s Talk Caring and Communication

Going back in time before I was fluently communicating on my letter board, communication happened in other ways. Like plenty of love was communicated to me in the actions my parents took to ensure I had self-expression.

I believe that without having a Mom that kept listening to her gut, listening to her heart, and not listening to talk that constrained her ability to listen powerfully for my voice, we would not be where we are today.

Too many times on our journey to fluency she could have given up. Caring to work through my dysregulation to build tolerance and a stamina for continuous purposeful motor control let us get there. Lots and lots of practice!

Let’s look at how a star athlete develops their bad ass abilities. Can’t say they don’t learn those skills magically. Learning a skill like the most wicked 3-point shot into the basketball net means lots and lots of practice to refine the motor actions needed. It also means a lot of missed shots. It doesn’t mean skipping practice or not doing the work to learn partnership with your team.

It was hard going for many months, let’s be honest. It was not until my Mom buckled down and worked with me every day that we started to build the teamwork that sets me up to shoot 3-pointers. Starting with 10 minutes and building as we learned to pass and dribble, shoot and score. Just let me tell you it isn’t going to happen without it.

Letting the coach build my skills while leaving herself out of the game was not an option for Mom. I think that when there is a coach on the court, readily accessible, that it is just harder to get on the court for some parents. But, I can also tell you the pay off is worth it. Can’t express how being able to “talk” with my parents, basically like a speaker might, is all I ever wanted.

Get out of the stands if you are in them. I know it isn’t easy, but also know that sometimes people need a kick in the butt. A loving, understanding kick. What is in the way of your daily practice? What can you give up in the name of unleashing your non, minimal, or unreliable speaker’s self-expression? Let’s get on that court team!

Love,
Jordyn

Graciela Gets Through

This autistic advocate should need no introduction. Graciela advocates with grace, power and tenacity. Graciela helps me get through life, and I hope I help her. Speaking from her heart, the truth of her experience on the last day of Autism Month I needed to capture her powerful words here. Please let her hear from you here or on her blog at daretolisten.org.

Getting Through the Autistic Life

Finding the way through life as an autistic takes time. When I think about my life with autism so many different emotions emerge. The first emotion is hard to define because no word exists to give us the sense of this emotion.  Having ways to talk about feelings makes life easier, but having no words for this hard feeling has been tough. The feeling feels great and bad at the same time. With being autistic there has been so much that has been hard to handle but there is also much that I love about my mind that I think is due to my autism. Having to live between these two dichotomies is not easy. 

Most days I have to try to really work hard to stay focused on the positive parts of being awesomely autistic. If only others could see the awesomeness that is such a huge part of me, the life I’m living would be so much better.  But the reality is that other people find it hard to look past my tormented body and do not get the opportunity to engage with the real me. I am,therefore, worth nothing to many.  When this is the daily thought that runs through your mind it’s challenging to stay positive. 

When being so misunderstood the thing that frees me from my worries is great academic work that makes me become more regulated and helps me share my intelligence. Many days it is becoming tough because the ideas that I want to share with the world are not getting out because the work that I need to do to get them out is daunting. Being in my body is many days too upsetting. Live like me for a few minutes and you would think that you had been given the worst life. Having to save your pride from getting the share of people’s stares is not so simple. 

Autism is not all bad though. Autism is a lot of the reason why I have a lot of the amazing intelligence that I have. Life with a mind like mine is not dull! A lot of the makings of my intelligence can be traced back to the amazing mom I have who always had me interested and involved in the world. Can you have the best being on the planet on your side without being enriched? Are these things embarrassing to you, mom? 

Getting the world view that all of us are equal has given me the feeling that I matter! We should all have the sense that getting treated as the humans that we are always takes precedent. 

A lot of the things that are the hardest for me are so easy for others. For example having the ability to talk to another person comes so easily to most but it is almost impossible for me. Another thing that is not easy for me is getting my body coordinated and strong enough to make my athletic dreams come true. A lot of the challenges I must overcome so that I can reach my goals are massive to me. But we must all try to face the things that hold us back. The things that I have accomplished with the right support have been incredible! The future is going to be so much brighter because I can access my words through pointing to letters in order to get out my intelligence and my ideas. 

Open your minds to the awesome things I have to share and I think that life will be a lot better for all of us.

That is how sharing is done!

Jordyn

I believe Ian!

Can’t say enough about the amazing heart of my rad pal Ian. While we have only met in person once briefly, I have had the honour of participating in some online classes with him and this dude is deep and brilliant. Ian’s lesson below is for is for all of humanity. Cherish his words and let them speak to you in moments you need to up your good human quotient!

HOW AUTISM AFFECTS NEUROTYPICALS:

I NOTICE A LOT BY JUST OBSERVING…
MY SILENCE AND SUBTLE OBSERVATIONS PAIRED WITH INTUITION HAS ALLOWED ME TO TAP INTO THE MIND OF THE NEUROTYPICAL.  AS AN AUTISTIC THAT DOES NOT SPEAK, I OFTEN MAKE LOUD NOISES, HAVE DIFFICULTY STAYING STILL AND CONTROLLING MY BODY.  WHEN THIS OCCURS IN PUBLIC I CAN FEEL OTHERS EMOTIONS.  FEELING OTHERS EMOTIONS IN NOT UNCOMMON FOR ME BUT THESE EMOTIONS ARE MORE INTENSE.  I OFTEN FEEL A CAULDRON OF EMOTIONS RANGING FROM LOVE TO FEAR.  I DO NOT TAKE ANYTHING PERSONALLY, I TRY TO HAVE LOVE AND COMPASSION.  HOWEVER, IT IS DIFFICULT FOR ME TO BE AROUND NEGATIVITY,  IT HURTS MY BODY AND SOUL.  I FEEL AS IF WE COULD ALL PRACTICE LOVE, COMPASSION AND ACCEPTANCE THERE WOULD BE A SHIFT IN THIS WORLD AND WE WOULD END SEPARATION.  I WANT PEOPLE TO KNOW OR AT LEAST RECOGNIZE, THAT WE ALL HAVE GIFTS AND EXPERIENCE CERTAIN CHALLENGES.  SO IF YOU’RE OUT IN YOUR COMMUNITY AND YOU OBSERVE SOMEONE ACTING OUT OF THE NORM MY HOPE IS THAT YOU WILL REMEMBER MY WORDS AND LOOK TO YOUR HEART.

~ IAN MARCUS

Enough said… practice love, compassion and acceptance.

Jordyn

EJ emotes about April

Good buddy’s like EJ are hard to come by. He is one deep dude with many avenues of communication. Join me in reading this amazing poem that speaks to the heart of the month.

April

Such a full month
Such a full heart
Loving every minute
Loving every part

We’ve come so far
So far still to go
What the future holds
This much I know

With so much inside
The world needs to hear
Our spirit is strong
And our message is clear

Kindness above all else
Embrace the unknown
Step out and join in
See how much we have grown

My hopes for us all
Are to feel a release
Find what brings joy
Find your own peace

– EJ (12)

Give EJ some love people!
Nelson, my service dog, is a big EJ fan and Nelson is never wrong.

Jordyn

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