Can we not be silent please?

One thing I have been noticing is how easy it is for parents in group situations to forget to be a Communication Partner for their non-speaker.  Parents get wrapped up in discussing plans for the future or their story of the past and forget to be present in the moment.

A Communication Partner, in my opinion, creates and seeks out opportunities to empower their non-speaker’s voice and intentions.  They are an extension of the non-speaker, not their to hold a board when an opportunity to communicate is presented to them.

My mom is tirelessly ensuring that my intentions are fulfilled in private, and more importantly, when we are in groups of my peers.  She ensures she knows my body management goals and my social goals (who I want to converse with to forward my mission in life).  Getting to all this, while ensuring she takes care of our friends, is a full time job.  I think Mom reached her limit a couple times this month, and is learning boundaries while always expanding her capacity, and never just giving up on who she knows herself to be.  I know I sing her praises often, and that that could be viewed as her influencing as a practitioner, but I believe in expressing gratitude where gratitude is warranted.

Mom has been a champion for full self-expression and powerful communication from long before I was born.  She has empowered more leaders in this world by powerfully listening for what is needed and wanted to fulfill their life’s purpose, than anyone reading this could possibly fathom.  She does this without the need for acknowledgement or accolades, with power, grace, and humility.  She is one no nonsense chick.

But, I digress, and always want people to get her magnificence and how truly gifted she is.  Parents would benefit from watching who she is being and what she is doing.  Plus, benefit from listening to this coaching:  “Be very clear of your, and your non-speaker’s intentions and be straight about whether you will be their parent or their designated Communication Partner at events.  Honour your non-speaker’s intentions and goals.  Be kind and empowering to the voiceless!  Only when given a board and an empowering question can we express ourselves. ”

My mission is to unleash our voices.  Who is with me?

Purposefully passionate,
Jordyn

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Just be a good advocate

I am constantly processing the world around me.  Every feeling, mood, shift in energy is flowing through my sensory system.  I am a walking energetic barometer.

It takes all the little energy I have to keep it together in public settings.  When I get depleted my ability to control my body decreases exponentially.  I either start to squeeze Mom’s face, stim on my drawing board more, or just plain pass out with Mom as my most excellent pillow and back rest.

This past weekend was extremely hard.  Being a person of some notoriety in my community, I feel compelled to push myself to be present and available and grounded for my peers.   Just want them to have lasting inspiration and a measure to strive for when it comes to body control.  I want to lead by example, and yet what I discovered for myself this weekend is that was a false representation of what body control looks like.

What is a better goal is to demonstrate autonomy and expressing my needs and wants.  I can feel that while a lot of my peers have access to their voices, they are still trapped in a world of parental and societal expectations and are not fully self-expressed.  It would serve parents reading to find out from your non-speaker how much parental pleasing your kid engages in.

I am now on a mission to unleash self-expression and purposeful, passionate, mission fulfilling communication in my peers.

Watch out World!  We are here to make a profound impact.

I love you all,
Jordyn

 

Do you stand with non-speakers?

Do you believe in the intelligence and competence of all human beings?  Each person having a right to their communication method?  Innovation is what makes the World grow and evolve over distrust, fear, and doing the same ineffective things over and over again?

Please stand with us if you are a yes to any of these questions!

United for Communication Choice is standing for all forms of AAC (Augmentative and Alternative Communication) to be recognized equally.  Please like their Facebook page and check out their Website and, where you can, help us spread the message.

Before change can happen, more questions need to be asked of those against these forms of self-expression.  Only in seeking to understand the basis of their fear of innovation, can we speak to that fear and address their concerns in a way they can hear.  Defense with “You are Wrong!” only digs their heals in further.  Finding common ground from which to converse and powerfully listen to another and create partnership based on wanting the best for non-speakers.

Jordyn

What is purposeful motor

I spent my last week at Spiral Garden, a day camp run out of Holland Bloorview Rehabilitation Hospital in Toronto.  This is my second summer doing a week at this camp.  My mom attends as my Communication and Regulation Partner.

With loving assertiveness and intention, her job is to have me do the work to create my art.  Body management is a full time job there, as I am easily becoming impulsive with the myriad of stimuli.

Knowing my intentions to create a lot of clay art gifts and canvas art pieces, Mom ensures my body is engaged in rolling, cutting, applying slip, scoring, stamping, and glazing. Lovingly intentionally guiding my body away from her phone or my drawing board.

I watched a few helpers of kids like me tell people that their charge for the day wasn’t interested in painting or doing clay.  I could bet you big money that if they had a reliable voice they would have said something like “Help me make something please.  Don’t take what you see as an indication of my wants.  I have little control over this skin bag.”  Caring for their inner voice needs to be taught to these big-hearted volunteers who are doing their very best.

Purposeful motor engages my body and overrides my impulsive pathways.  The more I practice purposeful activities the less hold my impulsive actions have over my body.  Having the right kind of support is critical.

Jordyn

Can we all be grateful

I am noticing the rat race we live in.  Forever planning, executing, reflecting and adjusting.  Always in search of more, better, and different.  Justified in being an eagle  hovering over the intimate relationships in your life – disconnected.

Is this what life is about?

I think not!  How about slowing down?  How about deciding that the juice in life is in the intimate and connected moments?  Being present with another with no agenda, no distractions, just you is the wealthiest life one could hope for.

Doing life is different than being alive!  Joy is being alive, present, and making a difference.  I hope for a joyful life for you all.

Jordyn

Does Self-Love Matter?

co-written by Graciela Lotharius and Jordyn
(you can find more of Graciela’s words at www.daretolisten.org)

How do we bring more self-love to those we encounter?  It’s not an easy task.  Just loving people is not enough for them to give up being self-deprecating.  Strong self-love works for those who can stop seeing their flaws in order to understand the terrific beauty hidden underneath.

Joy can be found in what each difference from the “norm” brings to the tapestry of humanity.  When we love ourselves deeply we can really spread that love to others.  By being someone so accepting of our own differences, we demonstrate a state of such pure self-love, that others can’t help but get over themselves.

Try to start practicing this today, instead of taking yourself down the road too often traveled of not seeing the terrific beauty in yourself.  Or you can get yourself a bigger problem to solve and use your differences as assets.  Or, if the problem is big enough – like bringing peace to the planet – then you can’t solve it without first bringing peace to yourself.

It is not easy to get out of your own way sometimes, but it is so worth trying so that our love knows no boundaries.  What if our World was filled with that kind of pure love?  Then we would be in the World so filled with truth and joy, and our lives would be so much happier.

(image credit: Susie Lotharius)

Being a B.S. Detector

The ability of kids like me to detect your B.S. (a.k.a. the inconsistency between your emotional state and the facade your portray) is highly acute.  Faking around us doesn’t work, and does the additional job of confusing us and we must engage our fight or flight response not knowing who we have in front of us.

Sometimes, you may think we are reacting strongly to another stimuli, but I assure you more often than not is your B.S.  I would rather hang out with a sad person who’s outsides match their insides.  I know what to do with that.  Be caring, compassionate, and a good friend.  When you “hide” your sadness or upset, I have no idea which to interact with, the inside or outside.

I am a caring and compassionate being who always creates a loving environment around me.  If you can’t be real with me, you aren’t being real with yourself.

What would the world look like if we all matched our inside with outside?  If we empowered each other through listening freely, without judgment?  If we cared for each other while allowing freedom of belief and opinion?

Don’t hang around me unless you want to be called on your B.S. and listened to powerfully.  I am here to bring more peace and love to the planet, starting one person at a time.

Jordyn

{chosen image credited to http://foundationforconsciousliving.com/authenticity/}

Do you get crappy sleep?

I have been having a lot of trouble lately with my sleep.  My sensitive body is prone to illness, including body aches and nausea.  These occur with low barometric pressure, so rain is my nemesis.  I take some naturopathic remedies to help with the aches, but they only do so much.  So, I nap!

Being this sensitive frankly sucks!  I nap for 3-4 hours and then am tired and wired at bedtime and am not able to fall asleep.  Joy can diminish when you are always so tired.

I am now determined to sort this out.  It absolutely is taking its toll on Mom.  She isn’t getting the sleep she needs because she is up during the night helping me to get my wired body to relax enough to sleep.  I am not doing this to be a little stinker, I am truly having genuine trouble falling asleep at night even when I haven’t napped or slept well the previous night.  It is impacting my ability to be the best body controlled version of myself I can be.  I have so much work to do, but am falling asleep during work hours.  Just sucks!

I am not telling you this as a way to elicit your pity.  I am telling you that like me, others have real issues with sleep and need your support to work it out.  This is relatively a new situation for us, but I have gone through phases like this before.  Different reasons, same lack of sleep.  I am well aware of the impact of lack of sleep.  Doing a lesson on it isn’t going to make a stitch of difference.  Mom and I are brainstorming solutions together to break this horrible pattern.  I know we will because we are a powerful pair.

In a state of eyes half open,
Jordyn

How come I need a Communication Partner?

If you have been reading my blog you will connect with what I am saying more easily.  I have a body that does not listen to the commands from my brain.  My body is more a ‘reaction and impulse’ machine than a ‘purposeful action driven by the cortex’ machine.  You see, given my hyper sensitivity to my environment, things that would not even cross your radar send my body into fight or flight – anything from the change in air pressure to daring family adventures in crowds (read recipe for sensory overload).

Doing anything purposeful requires a minor miracle if done independently.  I need to build motor patterns for everything, always with an outside register and initiator until pathways are strongly myelinated.  Lots of verbal prompting and sometimes even physically being assisted help me really build a strong brain-body connection where one didn’t exist.  The end goal is autonomy, but it always starts with being taught.  How do you learn a new skill?  I bet much the same way, but without your body fighting to flee the whole time.  Being dependent on outside initiation, feedback, and support is how we all get good at anything to the point that it becomes automatic and purposeful.  Doing any new physically challenging activity requires a coach, so how is my need for prompting and feedback any different.

Back to the question at hand.  Not only is having a Communication Partner needed for me to get my body to behave enough to be concentratedly purposeful, but the partnership elevates my ability to stay purposeful.  Let me unpack that a bit for you.  I am an impulsive being, impacted by oodles of external and internal triggers.  Left to my own ability to initiate and maintain purposeful motor control you would not be reading this now.  Can you imagine being trapped watching baby videos with zero ability to stop yourself?  Brutally torturous existence, yes?  Well guess who stops that incessant loop that plays in my brain whether I’m in front of the videos or not?  You got it, my Communication Partner!  Creating an environment that pulls for me to be purposeful and productive is their job, whether they are skilled on the boards or not yet proficient.  There is a direct correlation between how great a purposeful environment they create and our effectiveness on the boards or with purposeful motor activities.  The way of being lovingly assertive and completely believing in my competence makes it easier to stay on task.

A final factor is that my Communication Partner desires to only empower my voice.  Communication is a you and me exchange of information.  My Communication Partner listens powerfully for what I am saying, without adding or taking away anything.  Never interrupting or influencing.  Don’t think many people are able to be that powerful a blank listening for another.  That power creates a trust and partnership that isn’t easily replicated.  Any person holding my board doesn’t work.  Each partner must build that trust and capacity to listen powerfully with nothing in the way.  Totally a skill!

Why not independent typing yet?  Well, I am building motor pathways with my partners.  Putting my keyboard on a stand without a connection to these humans is a whole lot harder.  My impulses fire more often and I no longer have that environment pulling for purposefulness.  It takes all of my available energy to do like 2 sentences in 20 minutes with a lot of backspace key use, versus writing something like this blog in about an hour with virtually no backspace use.  While I am committed to being independent and will continue to work hard toward that goal, I am grateful to be powerfully supported and self-expressed in my communication partnerships until that day.

Gratefully partnered,
Jordyn

Letter to ASHA

Dear Board of Directors, Ethics Committee, and Members-At-Large –

I am writing today regarding the proposed statements condemning Facilitated Communication (FC) and Rapid Prompting Method (RPM).

I am a 15 year old non-speaking individual.  For the first 12 years of my life all my thoughts were held in my head with no way to express them.  Despite years of therapy including appointments with Speech and Language Pathologists, I have never gotten past being able to express basic needs like food, drink, or washroom with my voice.  I am a diligent worker and my parents poured money, time, and hours of effort into their mission to unlock my self-expression.  This just to let you know that they, and I, were not messing around.

It was not until I was taught the motor control required to point to letters on an alphabet board (and later keyboard) that I could share my thoughts, feelings, emotions, and just how hilarious I am.  My parents no longer needed to guess what was up when my body was dysregulated, I could tell them.  We can now work together to help me regulate and accomplish my dreams and goals in life.  To this day I am still always surprising them with my witty responses and what my needs for regulation are.  Trust me that my main communication partner is not that funny or intuitive, she could not be influencing my output as your statement suggests (Sorry Mom, just telling it like it is.)  While my mom is very smart she has, on more than one occasion, had to look up words that I used to understand them in the context of my writing.  She eventually just gave up and believes me, because I am always right.

Having access to communication and full self-expression has transformed my life.  From hours of stimming and meaningless activities a day, to a life filled with deep relationships (including the most amazing girlfriend on the planet) and great purposeful motor practice to hone my skills and become an autonomous and more productive member of society.  Having my self-expression questioned by those who have no experience working successfully with my type of autism and apraxia is frankly paramount to slander.  Freedom of expression is a basic and legal human right.

Should this position statement pass (which it has in my country) it will not immediately affect me.  You see, I am currently home-schooled and have no oversight to prove myself to.  However, my peers do not always have the luxury of this option and will be denied access to a way they can demonstrate their acquisition of knowledge and will be relegated to being essentially babysat versus educated.  This is counter to your vision statement – “Making effective communication, a human right, accessible and achievable for all.”

I can only hope that ASHA at-large will not let the biased and inexperienced create an epidemic of trapped voices.  The Ad Hoc Committee proposing these statements has refused to consider evidence from users or other members of ASHA with experience with these methods of communication.   The members of the committee have also been known to publicly make slanderous disparaging remarks about these methods of communication and even some individuals who use them.  I would not call this unbiased.

I encourage you to retract these statements, and issue a formal apology to the communities using these forms of communication.  The damage of these statements has already effected my peers .  You are seen as an authority and should thus be using extreme care and ensuring fair evaluation of methodologies before releasing publicly.

One more thing, I appreciate that you are trying to look out for our best interests.  However, doing that without our input makes zero sense.  We are sentient beings capable of self-determination and great contributions to society.  You would be serving our population and society as a whole to empower our voices to be heard and strongly believed.

Yours passionately,
Jordyn Pallett

(The proposed position statements on FC and RPM from the American Speech-and-Language Hearing Association can be found at – 

The position statement from the Speech-Language and Audiology Canada (SAC) can be found here.

For those reading this blog, and wanting to join the campaign for communication rights, please email jrj@pallettcorner.net for guidance on how to take effective action. )