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

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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. )

Not Going to Lie

I find it so hard these days to manage a balance of productivity and recharge time.

Being so sensitive to the emotional climate in the era of Trump, and now Ford (as Premier of Ontario), I am constantly wading through a sea of upset.  It ebbs and flows, and with each announcement of the newest ridiculous statements or sanctions, I get swept away by the collective wave of anger.

Living this way sucks!  I have a mission to bring love and peace to the planet to fulfill.  However, it is slow and hard because I am so darn drained all the time.  My crystals only protect me so much.

Now, while you might be all “oh, poor Jordyn”.  Please don’t pity me.  I am resilient and resourceful.  While I battle the call to fulfill my mission while in a sea of emotional upset, I am clear that this is exactly what I am meant to do.

I don’t spend my time frivolously.  I am calculatedly taking actions consistent with my mission, while balancing that with fun, social opportunities that have me recharge and be in the world in impactful ways as a walking spelling example of my mission.  Do you walk your talk? 

Balance is something I think everyone could strive for.  That and being kinder to everyone with whom you are in contact.

Happily,
Jordyn

My girl is amazing

What a weekend we had.  Monumentous!

We hiked and we hung out, we laughed and we understood each other, and above all we just enjoyed each other’s company.

A challenge was our impulsive bodies.  It took a lot of practice and prompting just to sit next to her on the couch.  My excitement kept popping me out of my seat.  I trained and subdued that impulse and more this weekend.  I don’t think working on body control could be more fun.

Not many parents would create an environment for the kind of work we did, with such determination and ease.  Shout out to our fabulous Moms.  Anything is possible with the right people by your side – grounding, emotionally supporting, regulating, and prompting.

My dreams keep coming true.  Flying still from our time together.

Jordyn

 

With my love on my birthday

I am 15!  I am so darn happy.

We are spending the weekend in a cabin in the woods with my beautiful, smart, fun, and powerful girlfriend, and her amazing mom.  Best birthday ever!

We so are having the best time hanging out.  We will hike, play games, talk, and hot tub.  Bliss in Blue Ridge, GA.

While it may be raining outside, we don’t care.  Movies and cake and conversation are our rays of sunshine.

Weekend totally only started and I am already forever grateful.

Bliss-filled,

Jordyn