No real intention

I want to revisit something in case you have just joined me here at this blog, and it is a reminder for everyone else.

Non-speaking autistics have a different wiring system. The wires that connect intention and execution, by the body, are slow or not connected. I’m clearly speaking in highly technical brain science terms (wink), but you get the picture. The wires from our impulsive emotion centre (amygdala) and our primal survival centre can always hijack any purposeful intention we have – these wires are running an uber speedy connection. You might relate to it like the difference between a dial-up connection and a lightning fast fiber connection.

Can you imagine being excited to work and that excitement triggers an emotional impulse that gets totally in the way of your being productive? Whether it manifests as being frozen or being out of control, the result is the same – intention is hijacked.

I think, for me at least, what I need in these circumstances is reassurance. Reassurance that: my CP {Communication Partner} gets it isn’t my insides rebelling but my body reacting; that they will ride out the wave with me; that I am loved and accepted; and that I will gain more control over time. What isn’t helpful is heightened emotions or clear pity. My CP needs to be my rock and my cheerleader to support me through it.

I can’t tell you the number of times my body looks like it is melting down from overwhelm or over-stimulation when, in fact, I’m excited to be somewhere. Sometimes the only way to support me is to wait out the emotion surge lovingly. I am getting way better at managing this over time, but can still get caught offguard sometimes.

Kindly remember that my/our wiring is different,
Jordyn

Photo credit: ID 29202778 © Splosh | Dreamstime.com

Let’s get real

Going to share about my Alpha-1 Antitrypsin Deficiency (A1AD) and its impact on my energy and functioning. Remember this is just my experience of this genetic condition. For more facts or information do your own research.

A1AD is a genetic disorder that makes the alpha-1 antitrypsin (AAT) that should be made in the liver come out ill-formed or not at all. It (AAT) is a protein that protects the lungs. So a result can be lung disease, but in my case it is those pesky malformed proteins that have damaged my liver. Just my luck to be one of the lucky few to be diagnosed with this lame disease as a kid. Ten percent of kids diagnosed with A1AD are liver affected.

So guess I won the “A” lottery. One in 4 chance I would be an A1AD, then 10% of that means my odds were very low. One new patient a year at SickKids kind of odds. Add in the autism and I am even more rare. I will let you do the math on that.

Liver disease is no joke. My cirrhosis is advanced and my spleen is enlarged and the portal hypertension resulting means I don’t clear crap through my liver well, have a very low platelet count (I clot slowly), and I have a host of more potentially embarrassing issues (acne and excess estrogen in my system) – good thing I’m secure in my stud status.

Basically, good choice of my parents to keep me homeschooled and away from the cess pool of germs and bacteria that must live in public school. I’m grateful on two fronts because I would not be successful in school due to my sensory sensitivities and the limited opportunities for someone like me to be appropriately educated (watch my friend Damon’s YouTube if you don’t know what I mean). Less chance of sickness and more chance of education at home.

My sluggish liver impacts me in many ways – a cold lasts forever LOL, more junk in my system means I am tired a good amount of the time, and going into groups is always a challenge as so draining and lose control so fast of this impulsive body. I love my family and friends, but small gatherings are all this guy can handle. I make exceptions for very important occasions – conferences where I can make a difference, girlfriend’s sweet 16 party, meeting with my group of peers, and when family is crazy enough to plan a reunion. However, in all of these circumstance I need big alone breaks and days of recovery. Thus picking and choosing, and planning downtime are central to my family’s existence.

I am blessed to be stable beyond my liver doctor’s expectations and predications. I attribute this to my very clean diet, my amazing Osteopath, and having detox supports like the IonCleanse Footbath and an Infrared Sauna. However, the truth of the matter is that at some point it is predictable that I will need a new liver. A long time from now is my plan!

I am sharing all this not for your pity, but to increase awareness. Awareness of the disease and awareness of the good supports I have. Doesn’t stop Mom from impulsively jumping to worry with every fever though.

If so moved maybe donate to an Alpha-1 charity (e.g. Alpha-1 Canada or Alpha-1 Foundation).

I plan to continue to defy odds all around!

Jordyn

Must see and act!

Damon Kirsebom kills it with this educational and call to action video.

Education is a Human Right!
Will you walk with us?

Jordyn

Stuck and good with it

My body is an interesting combination of impulse, control and prompts required for action. I have no explanation for this nutty, caring to be a mystery, skin bag of mine. Let me explain what I can, in hopes it makes it easier to understand what may be going on with you or your loved one.

I love acquiring new skills – rock climbing, weaving, smooching my beautiful girlfriend, creating from clay, etc. These things have many opportunities for my creativity or problem solving skills to be engaged, and they naturally have variations built into them. Totally the calm nature of the skill and its million little variables makes these a 100% more natural skill to perform once my body gets the basics. Does my body still need some external prompts or self-commands? Yep, but I can perform a series of things with just one instruction.

Where my body gets stuck on easy skills is perplexing to me. It won’t sit in the seat of the car, put on a seatbelt, close the car door, undo the seatbelt, open the door, or get out of the car without an external prompt. I stare at Mom and wait for a prompt, whether a word or a nod, then my body will execute. While going through this exercise, every bloody time we go anywhere, joy is lost by letting this keep happening. These are simple steps and I let my caring body win. How come?

I can only surmise that such a simple list of actions required doesn’t allow of enough of the real me to infuse creativity, problem solving, or basically higher brain function into the steps. I am left with a skin bag that waits to be directed. This also happens in similar “life skill” arenas like getting dressed and bathing – complete dependency on certain prompts. Loving Mom is stretching her brain with how to support me with autonomy here.

Like independent car entry isn’t going to make or break my life being awesome, it is just one of those pet peeves I have with this ridiculous body. One day I could do it by myself and the next starts this prompt dependence nonsense. Will the switch flip back? I hope so for my, and Mom’s, sanity.

Love,
Jordyn

Image credit: Photo 85448494 © Dominik Bruhn – Dreamstime.com

Can’t be anything but me

I can only caringly be the dude who gives and gives. I have yet to really learn how to conserve my energy for myself. I don’t have a gas guage with a warning light.

I am someone who is designed to support those I love energetically. Joyfully I help my good humans with loving them up when they are down or ill. I also go to great lengths to support my fellow non-speaking autistics with regulating when they are here working with Mom. I am a secret ingredient in her tool kit when teaching others.

I know some may think this is crazy, whacko, or a bunch of nonsense, but I am always 100% sharing my experiences of life.

Sometimes the only way I know how to rebuild energetically is by being alone. This means none of my gas is being used helping anyone in my vicinity and I can slowly charge my battery. When my battery gets really low I have nothing to give anyway, right?

Only good Mommy can hang out with me during these times. She is a charging station vs. a discharging station. I need my solo Mommy time sometimes, that is just how it is.

We are working on making this balance of output and recharge more natural and even, but sometimes there is just no other option than a few days of recharge if we ever want to experience anything fun,

I hope those who just get into good grooves with learning Spelling to Communicate (S2C) with Mommy understand and use those times to build their skills with their moms.

Love,
Jordyn

image credit: ID 63016926 © Meepoohya | Dreamstime.com

Howl Love!

Happy Halloween!
I want to celebrate my goofy, hard working, and magical friend Luke. He turned 11 this week. Luke wrote this piece a while back in a session with my mom. I hope you enjoy it, and hope his celebration of his fun family isn’t too spooky.

HOWL LOVE
by Luke Lackey (10)
NICE TO HAVE HAD SO MANY GREAT MEMORIES OF GROWING UP. TOTALLY SO LUCKY TO HAVE MY LOVING FAMILY. MY RIGHTEOUS LOVING LITTLE BROTHERS MAKE SMILING THROUGH LIFE SO EASY. I HAVE SO MANY SWEET MEMORIES ALREADY AND I’M ONLY 10. MY FAVOURITE MEMORIES AREN’T BIG EVENTS, BUT EDUCATIONAL MOMENTS ON WHAT UNCONDITIONAL LOVE IS. NICE TO REALLY TOTALLY SAY MY FAMILY IS A DEN OF WOLVES WHO MAKE LIFE FUN AND SAFE. TONIGHT I WILL HOWL AT THE STARS WITH MY LOVING PACK!

I hope you give Luke some huge props in the comments. Good, loving, hilarious and badass advocate on the rise in this guy. Love ya Lukester!

Jordyn

Which journey will you choose?

Good humans are everywhere. Caring deeply is a trait I believe I share with my autistic peers. Love, joy, and compassion are what we are here to teach.

We are isolated caring islands that people can visit. Some see our silent or different shores and see beauty, while some see looming craggy edges that need to conform.

Those that see beauty more easily discover the beachy oasis of calm on the other side of the island. They are open to all sides of the island. They enjoy the climb on the craggy rocks to reach the island’s summit. Joy permeates their journey as they discover all the island has to offer.

Challenging perceptions of what autism is believed to be is like talking to goofy people who refuse to believe that an island has more to it than the craggy rocks they can see. They refuse to paddle their little boat of cynicism so they can catch a glimpse of the island from a different viewpoint. Being right about what the island IS totally robs them of the gift the island actually is. Can’t think there is much joy in that choice.

Those who freely paddle or climb to discover the land they have been gifted with will keep reading my blogs. Those who are on the boat of cynicism will likely stop following in the weeks to come. A third option is to suspend cynicism and paddle a little and see what you discover.

I look forward to hearing what you hear in my writing. I am an open book and committed to sharing my experiences, good and challenging, in an even more forthright way that I have. I suggest you strap on your climbing gear or grab your paddle.

Yours transparently,
Jordyn

photo credit: ID 52549427 © Blagov58 | Dreamstime.com

Giant Hearts Creating

Good beauty, compassion, and grace was created by some very loving humans on the weekend of October 4th, 5th, and 6th. Pure Freedom Farm hosted a live event with Suzy Miller that weekend and I got to be a key player in what we brought forth.

Let’s back up a bit. I have been doing private sessions with Suzy for a few months. She has helped me with being far more grounded in my body and less sensitive to the emotional soup around me, resulting in much more control and purposefulness. After weeks of having zero energy to get through my day, my work with her gave me my life back. With caring grace we work together energetically to ensure I, and Mom, are operating at higher and higher levels of ease, peace, and effectiveness. So, of course, we registered and attended “The Embodiment of Joy” live event.

Love was going into everything around that event, and showed up powerfully on the weekend. The land, location, and animals all were supporting us.

Good energy work and discussion helped everyone, the brand new to Suzy and the seasoned. Loving release of barriers to joy was achieved.

Joy looks different for everyone. It lives in that place where we are free to be fully ourselves. Joy arises when we quiet our ‘shoulding’ and persistent ‘caring to belong’ voices. We all intend to be ourselves, but adopt our environment’s ideals so we can feel safe, loved, and ‘a part of’. I’m certain that while that brings a degree of happiness, true joy can’t be acheived when there is any pretense involved.

Let’s all let our beautiful, unique, loving identities loose and light up the world with joy and peace!

Joyfully me,
Jordyn

Motor Control beats Emotional Dysregulation

Another snippet of our love, for those that can stand the gush and the mush.

J:  Motivation is key for getting control of your body. 

G: It is great to stay motivated. 

J: Bodies are extremely tricky when being appropriately romantic is on the line.

G: Getting to try the most difficult and most interesting things like holding hands and kissing has many times been frustrating but we are getting much better with practice. 

J:  I get all frozen. My limited face control gets even more stiff. Puckering is a skill to learn, and I still need more practice.

G: I think that we should keep practicing then!

J: I wholeheartedly agree!

G: Have to get more time together. Can we make these visits more often?

J: 100% pleased to make these visits more often and for longer. Joy is being with you wherever and whenever.

G: Having the toughest time getting my intense emotions under control. Since this is our last time together for now.

J: Joy is being with you in, or out, of control. I treasure every moment.

G: It is awesome to watch a movie together and spend our last minutes doing this.

J: I think that is perfect!

Good magical love is learning to let learning caring deeply come out physically in appropriate ways. Emotions can hijack the best of intentions. Really love our time together, and the body control gets easier every time.

Jordyn

for more from Graciela visit www.daretolisten.org

Good to be Mushy

When visiting my girlfriend, Graciela, for her Sweet 16 we wanted to write a blog together. I told her she got to start, and what follows is what we wrote.

G: Awesome to spend time with my wonderful boyfriend!

J: My love gets to be caringly celebrated today and I get to be with her. Too awesome!

G: I want to read the many love songs that are written in my heart to you. My heart is full each day that we have together. 

J: Can we be any more gushy? Can we be any cuter? I can’t believe we are so lucky. 

G: Have to agree! A lot of the things that we get to experience are so long sought after by many but it is hard to find the one that your destiny is intertwined with and with whom you are meant to be. 

J: I love you too much! Joy is being intertwined with and creating with you. Our future is very bright. 

K (aka my mom): Is this a blog?

J:  She started it.

G: I think it is awesome to read the blogs that take the shared idea of love and can expand on it.  

K: Do you want to add or expand on this blog?

G: No.

J: No. Just write another one for later

G: Yes. Good idea to do it now. 

K: First you need title.

J: Last one should be called “Good to Be Mushy”

G: I love Jordyn. I love it.

Hope you enjoyed this snippet of our loving conversation.

Can not express enough what being your boyfriend means, Graciela. You are my direct line to how to love.

Jordyn

For more from Graciela please visit http://www.daretolisten.org/