Having a hard body week

Do you ever wonder what it feels like to do things you don’t want to do only because your body reacts to absolutely everything?  Probably only families and therapists of people like me have.

Not knowing what it is like to be fully in control, I may not be able to describe it in a way that you could fully get, but I will do my best to give you a glimpse.

Many people think that people with autism are absolutely just misbehaving.  I wish I had the control to willfully think of what I wanted to do and execute it.  Only with the greatest of occasional unassisted purposefulness can I make a little mischief intentionally.  Just allowing myself to dream of the funny things I would do is all I get.

Allowing a fully capable dangerous autistic to dream of tricks would make a great guide for misbehaving kids.  I bet our ideas are brilliantly thought out.

Being a slave to impulse is much like being on a diet then wondering how that forkful of calorie and sugar filled cake ended up in your mouth.  Except you do have an ability to stop, rationalize, and not have a bite.  We eat the cake like it is the last meal we will ever have, 100% joyfully and impulsively.

Jordyn 100%

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I love my Mommy

There is only one Mommy.  Good-hearted, fabulously genuine, and always loving.

My mommy just makes people feel loved and heard 100% by just being herself, no tricks or gimmicks needed.

Because she is my rock 100% I notice how different I feel when she isn’t here with me. Just not as grounded and able to control my body.  Do you ever feel eager to always feel your body?  Joyfully, when Mommy is a good pressure-free listener I feel so absolutely in my body and able to 100% express anything I need, or want, to.

How can I develop this feeling without needing her, that is the trick?  Just having Nelson helps a lot.  100% joyfully being a dog’s boy.

Being a cool mommy, she helped me find an absolutely wonderful dog named Rocky who will be part of our family now.  He is pure of heart, but still a little nervous in his new angelic home.  Yes he is named Rocky, you read that right.  Really perfect somehow!

Love and fully Jordyn,

Jordyn

{Featured image, waking up camping.  Below, Rocky the Dog}

How do I be a good human?

I think about this a lot.  Too much of me is angelic to sometimes be a good human.

“What do I mean by this?” you might be thinking.  Well, I believe we are all angels with varying degrees of how in touch we are with the angel inside.  I believe that a lot of autistics are more in touch with their angelicness.

Having a diverse sensory system has been a blessing and allows me to experience things you may not.  So just because you don’t experience what I experience, don’t discount it as possible.

Joyfully damaged is one way I describe myself.  I would not want to be any other way. Well, there are moments I do think “Damn my crazy out of control body”, but that is only human.

Dancing with my crazy body is 100% a chore.  I am limited to what I can and can’t do, sure.  However, I would not want to give up how I perceive things for a body that behaves or a mouth that speaks purposefully.  Far be it from me to waste my energy with wishing for another body.  I would rather use that energy to further my ability to control the body I have.

Sometimes being me means being misunderstood.  People see me toe walking, jumping and running, screaming or being loud, watching little kid videos or playing repeat what I say with mommy, etcetera, and they see a boy being badly behaved or a less than normal boy.  They don’t see me.

The caring listener, loyal friend, joy-filled non-speaker, giving and intelligent human.

Perception guides how we interact, but what if all 100% humans could drop their learned filters and see each other for who they truly are.  What kind of planet would we live on then?

Jordyn

Backing up to the beginning…

I am being asked lately to advise families who are about to embark on a magical journey with Spelling to Communicate.

I am passionate about one thing – ENJOY!  I have learned that attitude is 95% of success.  What I mean by this is when you are beginning this process of 100% teaching the motor cortex to point accurately you want to maintain a regulated and focused body.  Who learns anything when they are under pressure to perform?  Only when the parasympathetic nervous system is in power do we learn the most effectively.

Being someone who has lived through pressure – Mommy struggled a lot after our visit with Soma and put pressure on herself and me – I can say that everything changed when Mommy focused on connecting and learning together (Thank you EV!).

My best times learning were not totally structured, but reading a story and answering known questions (answer was in the text read).  I know this is not maybe how others would best learn, but for me it was the best move Mommy could have made.  She included the skill building motor practice in a totally relaxed and fun activity.

Some may bock at deviating from structured lessons saying instructions from professionals must be followed exactly for success.  However,  I disagree.  Allowing yourselves to be together without pressure is the ticket.

Please enjoy this building of a beautiful communication partnership.

Yours playfully,

Jordyn

{pictured:  Jordyn with his “truest” friend, Julie Sando, playfully building a communication partnership} 

Camp is so cool!

I am so glad to have experienced camp at Holland Bloorview Kids Rehabilitation Hospital with Isaiah.  Spiral Garden art and music camp is a place of possibility and acceptance.

Iz and I had so much fun making collaborative woodworking butterfly, contributing to the magic flying machine and magic garbage truck, and fun with clay.

My favourite was clay.  All so earthen and grounding.

All activities were great for purposeful motor practice.  I loved it all.  Can’t wait for next year.

Purposefully,

Jordyn

Do you believe in fate?

I am very excited to hopefully adopt Bondi (pictured above).  He  and I will be great friends, and he will be a wonderful friend for Nelson.

Because we have camp this upcoming week, it isn’t fair to bring him home yet.  The rescue asked us to wait to submit our application in case someone else can adopt him sooner.

I am being very trusting that what is meant to happen will.  And I think he is meant to be part of our family.

Can you help me intend he ends up in the right home, please?  Can you believe in fate?

Believing may help it turn out the way I want it, and either way he will be in the right family.

Your donations could also help the awesome rescue he is currentlu at Finding Them Homes.

Hopeful,

 

The joy of training new Communication Partners

My friend Katie, and Daddy have both been working on their skills as Communication Partners.  They are getting so much better.

Yesterday, I did lessons and coaching with them both.  I love training new Communication Partners!  It is fun to watch them grow and be confident.

My coaching is to “have fun”, always before we start.  Then after about 30 minutes I let them know how great they are doing and give a bit of coaching to up their skills.  Then we keep going for another amount of time.  They get acknowledged and a bit more coaching at the end.

I am so glad to be able to contribute and to have more Communication Partners.  Can a kid be more lucky?

Can all kids have multiple Communication Partners?  Yes, it just takes willingness to learn and have fun with a cool kid.  I hope more people want to learn and create access for more non, minimally, and unreliably speaking people to communication through spelling.

I’m offering my services to anyone who wants to learn or improve.  I’m a very good coach and I will make sure you succeed.

Happily,

Jordyn

Cottage always helps me be adventurous

Having time at the island cottage we rent is so recharging.  This summer we get to spend two weeks as the owners went on a vacation in Europe.

The cottage is always so beautiful and the lake is usually warm.  Having a blast trying new things like always having dinner at the table, playing beanbag toss game, paint by stickers, and sitting in the kayak.

All these really challenge my purposeful motor in different ways.  All take a lot of control and body awareness.

Just using a fork to eat is a huge victory!

I am excited to keep trying new things and build my purposeful motor control.  Any suggestions?

I really enjoy all things that have a purpose like needlepoint, sewing, and painting.  I like to create beautiful things.  I don’t like doing things for the sake of just doing them.  And I love being helpful to my family.  So keep that in mind when suggesting activities.

Thank you in advance.  I’ll keep you posted.

Jordyn

Enjoy posts about these adventures by clicking on the pictures to take you to Jordyn’s Rocky Journey Facebook Page (the dates of the posts are between July 30 – Aug 4, 2017)  

 

Can wise professors do appropriate research please?

I was very disheartened by the history of autism research as presented by the wise Professor Jaswal at the NCC {Nonspeaking Community Consortium} Motormorphasis Conference.  My heart ached all throughout the presentation.

My always loving mommy completely checked out.  She had heard some of his presentation before and didn’t want her negative emotions to effect me.  It was hard enough dealing with my own emotions and the waves of emotion in the room.  She made the best choice knowing how I would react, with choosing to just ground me.

I was very excited by Vikram {Jaswal} and Elizabeth’s {Vosseller} research into motor differences in people like me.  All so profound and impactful.  Jaswal is a trail blazer.

I hope that one day I can participate in their study and those to follow.  I hope that more researchers follow their lead.

Totally inspired by future research like this,

Jordyn

 

What is Autism?

Well let me start with what autism isn’t.

  • It is NOT a social disorder
  • It is NOT a behavioural problem.
  • It is NOT an intellectual deficit.
  • It is NOT a language deficit.
  • It is NOT a lack of understanding social cues
  • It is NOT a lack of attention to you.
  • It is NOT a lack of really loving parents who have tried everything.

Yes, some of these can show up in some people diagnosed on the very broad spectrum. However, I am speaking of the type of autism I, and my non, minimally, and unreliably speaking friends are affected by.  You might call us “low functioning.”  (How wrong a label this is!)

We are:
– highly sensitive with an ability to read too much about those around us.  We must shut some of this down to function.  When we can’t our sympathetic nervous system totally takes over and we fight or flight.
– capable of understanding everything we hear and see.  You could say we have the memory of an elephant or a high powered computer.
– 100% are able to formulate complex thoughts.  Some of these stump our parents.  And yes, math is easy for a lot of us.

Why can’t we talk?  

Autism is:
   – a motor cortex difference that has us be not in full control of our bodies, and
   – a sensory processing difference that has us be always on guard for too much of anything.
Because we are always overloaded our motor cortex is always dysfunctioning.  It is using all its power to manage that our bodies don’t lose it.  There is not enough energy left to power our articulators.  They account for 75% of our supplementary motor cortex.

Can you imaging not being able to get your body to follow a simple direction?  To even be able to point to indicate your intelligence?  Or to be able to laugh out loud appropriately? Every motor task takes intense concentration and effort combined with a peaceful environment to execute.  I am so tired just writing this.

So please do the following when you encounter someone with non, minimally, or unreliably speaking autism.

  • Do speak to them like they are listening and understand age appropriate material or higher.
  • Behave like a regular human.
  • Control your crazy yo-yo emotions.
  • Ignore everything that comes our of our mouths.
  • Be a good friend and patient communicator.
  • Help our bodies with firm, loving, and broken down directions.

All of these are crucial to being a fabulous friend, teacher, or therapist.

I hope this is like common sense to all, and have heard stories and personally experienced otherwise.  I believe these people were well intentioned, but misinformed.

Hope to make a difference with this blog post.  To learn more about this manifestation of autism join the Nonspeaking CommUnity Consortium Facebook Group and ask me question here.  I am an open book and would love to education more people.

Motorically yours,

Jordyn