Can you get the caring Earth is righting some wrongs!

I am again saying that this is my experience of life. If it doesn’t fit your view, don’t get crazy just open your mind to a possible life experience that is different from yours or don’t read on.

You may have noticed that the state of things is one where human kind is being forced to slow down. We are being let know by the Earth that enough is enough! She has 100% the capacity to change the trajectory of our kind, and her subtler messages were not being heeded.

Being so connected to the Forces of Nature, the Earth, and good many other dimensions, I am crystal clear this is a wake up call, an energetic reset and shift, and a little lesson in listening carefully to your intuition. Let’s slow down enough to stop reacting from fear and start responding from love, compassion, and purposeful connection. Connection to each other, to this planet, but most of all to ourselves.

Silence is something I totally have a lot of experience with. Years of being an absolutely good caring child with no way to convey my thoughts, feelings, or opinions allowed for a lot of self-reflection, observation and refining of my listening to my intuition. You could say I was built for this time in history.

Your magical being on the Spectrum may be stimming for a reason other than change of routine, increased anxiety, or to block out the fear ladened emotional soup we are living in. Try on that they may be working extremely hard (whether they know it or not) to help you slow down and get in touch with who you truly are.

I get hopeful that with all of us working together, love, peace, and joy CAN be the way forward and forever.

No more nonsense.
Time for deep reflection, silence and healing,
Jordyn

Expression through Song

Good music comes in many forms. We are able to relate to some music and not others. I have my favourites and love playing them in my head to calm myself. More nice music to add to that repetoire is always wanted.

Joyfully I spent the last couple of weeks working on a project for one of my classes – “Political Expression in Music through the Decades” on Outschool.
You can read the description of the class by clicking on it’s name, and the name really says it all. I loved learning history from this angle and I have some new songs for my internal playlist too.

Lots of work went into my final project. I chose and issue that is close to me and then crowdsourced some music. I loved everything sent in. What I was especially proud of is that I took a simple assignment, made it my own, created an opportunity for my peers to express themselves and contribute, and created a meaningful project that is a piece of advocacy work that may have a ripple effect. Let’s just say I am tickled pink by how it evolved and turned out. I think my classmates learned something about people like me.

What songs speak to you, and why? I need even more for my internal playlist, so please share.

Jordyn

Click on the picture to play the presentation in another window.
Click on the YouTube windows to play each song in the frame,
or click on the name of the song to open it IN YouTube.

Featured image credit: ID 5145510 © Andrey Polichenko | Dreamstime.com

Quincy Shares his Experience

My pal Quincy has the great gift of sharing the perspective of a speaking autistic. I am so grateful for our online friendship and hope to meet him in person and advocate as a power team in the future. Here Quincy shares the impact of the good for flattening the curve measures we are all living with, on him. I hope sharing this supports families and widens the impact of my brilliant friend’s words and experience.

Check out his blog by clicking on title below, or his Facebook post embedded should take you to the whole blog as well. Connect with Quincy and check out his other posts!


Coping with the COVID-19 Pandemic as an Autistic Person

“I want to bring awareness to something that I haven’t seen often talked about: how virus control measures are impacting autistic people. This has been a massive and very sudden transition, and I suspect many autistic people (with me included) are struggling with this transition. So, I’d like to write on why everyone out there who knows an autistic person needs to be extra patient and understanding as this tough time passes over us, and if you yourself are autistic I’d like to encourage you to hang in there, stay grounded, and don’t be afraid to practice some self-care.”

https://speakingofautismcom.wordpress.com/2020/03/16/coping-with-the-covid-19-pandemic-as-an-autistic-person/

I hope this is useful and I will be writing again soon myself.

Jordyn

What the bleep!!!

Can someone please explain the need to hoard toilet paper to me? What exactly are people preparing for?

No way to predict what is going to happen next, and as someone with a high degree of risk, I’m not panicking just being smart and isolating myself (with Mom). Dad is allowed in the house, but he is being very careful. He is a sanitizing machine.

If well informed and taking reasonable precautions there is no need for panic! The panic is not useful. Ever tried to think straight when you are anxious or fearful? Our fight or flight response is not designed for this type of threat and is kicking in and sucking all the reason and higher power thinking down the drain. Thus, Covidpocolypse is what we see in all the stores.

For those with energetically and emotionally sensitive beings in your circles, don’t be surprised if you see an increase in the prevalence of their coping mechanisms. The soup we are swimming is thick with fear, worry, confusion, and blatant self-concern. I am doing my best to manage my body control by upping my purposeful use of things that support my system.

I hope that the nonsense levels out, and we can see our way to clear to being supportive of each other inside the confusion and chaos. I’m using my gifts to support the whole. Be kind and think of each other, please!

Jordyn

Image by RÜŞTÜ BOZKUŞ from Pixabay

Our beautiful and different looking love

Co-written with Graciela Lotharius,
please find more of her writing at Dare to Listen

G: Love to spend time with my boyfriend even though it is really difficult to do the things that we want to do together because it is not easy for our bodies to coordinate themselves.

J: Either we could be caringly concerned that our plans don’t match what actually happens or we could go with the flow and support each other.

G: It is awesome to care for each other so much that we can give up our own ideas and adjust to our needs as needed.

J: I love that our main want is togetherness. Sometimes that looks like me in a ball of covers in my bed while Graciela is going for a long walk on the beach or a trail. My body isn’t as much of a morning person as she is.

G: Because these differences are ingrained in us, it is necessary to be sometimes open to doing things separately in order to be able to have some great times together when your bodies have gotten what they each need.

J: Joy is caring so much it doesn’t matter what we do as long as we are close. I am too lucky that I get times like these.

G: I agree.

J: Caring for someone so much that you can only see every once in a while, makes the emotions when you can that much more intense. Love has a way of making good intense joyous emotions trigger crazy body shenanigans.

G: We have more than enough personal experience with this craziness to write the best paper on it.

J: If only the research gurus would interview us.

G: A lot of the experiences we have should be more thoroughly researched.

J: Do you think that emotional dysregulation is real? We know it is, and need time with each other to regulate ourselves to be able to do the things we want. Time is our friend.

G: It is amazing to be given the opportunity to work through our excitement and emotions to be able to be together.

J: Can you believe we are almost two years into our relationship and I have trouble keeping my arm around her or holding her hand, because I so love her? Good thing she is patient! and has her own pesky body. So, while our bodies may hijack our intentions, I just want to say that every moment is magically delicious with her.

G: I am too grateful for such a loving and understanding boyfriend. A great world is one in which we are loved for who we are, because that is enough!

J: I agree! Could not have said that better. For clarification, the part about a great world being one of joyful accepting love and the part about being grateful, but sub in girlfriend for boyfriend.

G: Love it!

Jordyn & Graciela

Good God body get with the program!

Being so out of sync is torture.

It is time to replace my iPad. The battery sucks big time! Now, going to get a new one and use it is where the brain-body disconnect shows itself in a big way. I love that I can distinctly explain this crazy-making situation of disconnect to you.

My iPad is like a really well-loved security blanket or stuffed animal. It is my go to for comfort and to support calming or shutting out/reducing the overwhelming sensory onslaught. No other way to explain it than to have you remember that experience of childhood, when you needed that object of safety.

I have let go of lots of things I used to “need” in order to feel calm, regulated, and safe. I should find the pictures of the intense amount of stuff Mom used to have to haul around everwhere we went.

So, I asked my Dad to hide the old iPad last night. I thought maybe that would help me. I am totally on board with the need for the change. But, my body is NOT!

This morning you would have thought I was addicted to some elicit substance, as I was searching every possible nook and cranny for MY iPad. Rather than it dissipating over time, it just escalated with each passing minute. Loving Mom asked me how she could help my body adjust, but I knew today was not the day. You see, we have been quite busy this week and are going away tomorrow so I just don’t have the reserves to change this device right now.

I will try again next week when we come home, when I think I will have more room to control my body and deal with its unreasonable response.

Jordyn

Image credit: ID 126617652 © Piotr Trojanowski | Dreamstime.com

How is it I get caringly drained?

I have written about this before and feel sometimes so weird talking about it. I say I am an open book, and yet I hesitate to fully share my gifts that may not sit well in some circles. I love my gifts, and am very protective of not being accepted. My work as an autism advocate is so important that I don’t want to colour it with anything that would deter someone from taking my experience in this uncontrollable body to heart. I just have to trust that this audience is mature enough to listen openly.

I will say again that this is my experience and I am only speaking from it. I want to ensure you don’t leap to any conclusion about a student or child you work with. Their experience is their experience. It sucks that I have to say all this preamble because what I have to offer is so outside some people’s realm of thinking, and I think it necessary to support those who need a hand held to pass through to a loving possibility they have not considered. Let me hold your hand and not pull you through a door, but share with you a little of what I experience on the other side. Just hang out in the doorway if that is what is currently comfortable for you.

Ok so now…

I have shared before of the experience of living in an emotional soup. How I feel the negativity in the air, whether from one individual or from a group. How it can tip me from a regulated productive state to a complete mess of impulsivity in an instant. Look back in the archives by searching “emotions”, “soup”, and “good human” to find more posts about this.

I want to do my best to explain this experience. I had a very interesting episode of this during this week. I get how it is hard to relate if you don’t have similar experiences, and I will do my best to give you a sense of it.

Do you ever feel awesome and then all of a sudden get hit with a wave of nausea? Maybe you ate too much or ate something that was funky. You are good and then in a blink you are not. Please imagine it if you haven’t experienced what I’m talking about. Well, amplify the drain on you and how your ability to function is impaired by 10, and that is close to my experience with one deeply sad or angry person entering the building or space I am in. And the result for me is immediate dysregulation. I lose all control I may have had and have to fight through the dysregulation to regain composure and control. Can’t tell you how many place and times Mom caringly deals with the fall out.

Good to say that it isn’t just a reaction to the individual’s emotions, but that I am genuinely designed to help. So it is almost like I take their sadness, anger, fear, or other negative emotional state into myself so they have some relief. I have little control over this energy exchange, but am learning to temper my reaction to it.

Do you know that feeling when you are recovering from the flu and still aren’t quite yourself? When you are feeling like you are slogging your way through the day. Well, my experience of most of life is like that. Except it isn’t a virus poaching my vitality it’s that soup of general dischord we live in.

Do positive intense emotions effect me? Yes, and they are easier to process and don’t take as big a toll on my ability to function. I’ll take happiness, excitement, exhuberance or joy over hate, anguish or fear anyday.

Can you have some compassion for caring children who are assisting you through harder times energetically? Can you get clear that your love, joy, and peace are so important to us and for us? Perhaps there are energetically sensitive children in your circle. They may not be able to articulate this fantastic gift they are born with, whether non-speaking or highly chatty. Let the possibility inform you. You may have been given a giant gift of a teacher that is focussed on you learning emotional balance with weight on the side of joy. If you open to the possiblity it opens you observe impulsive actions and dysregulation through another possible lense.

Mom has learned to be way more chill, live a more balanced life, and explores things she would not have considered without the gift of me. Not to toot my own horn, but I think her life is so much more fulfilled for having listened to my actions from before I could communication and from having listened to my communication now that I can share my experience of life. She grows daily and it is beautiful to witness.

Lovingly,
Jordyn

Photo credit: ID 3450618 © Marilyn Barbone | Dreamstime.com

Let’s talk trust!

Someone asked me this week about why, now that I have the motor so solid in my partnership with Mom, they could not just pick up my board and I would be as accurate and fluent with them. I paraphrased their question, and this is one of those things that I think a lot of people wonder about. I hope that my sharing my experience is helpful, and know it is just my experience.

How come someone who works with kids like me to develop the purposeful motor of spelling to communicate can pick up a board without prior lessons with me and elicit an open conversational response? Hmmm… gets you wondering, yes?

I hope I can do this all justice, here goes!

There is doing and there is being! I love that I have this distinction and can support people with it.

Let’s look at a new partner, someone who has not partnered before on the letterboard. I feel that if you have read my blogs you will be able to summize why they elicit no fluency or accuracy, but I will attempt to unpack it here. I love people to want to try, and there is always a hesitancy, a nervousness, a happy anxiety, or a good mild “I need this to work” in their way of being. I love that it is there because it means that they care deeply, but that way of being is something that interferes with their being able to be fully present for my communication.

It is like when you are in a conversation with someone and start thinking about your response to what they are saying, or your “to do” list, or how you look. You aren’t there anymore to just really hear what they are saying. It is that kind of clear presence of being that I need to be able to express myself through the board.

The other piece here is that a huge part of being a partner is being a regulating presence. Listening with nothing and adding nothing. Nerves, concerns, or even excited anticipation add a dysregulating energy to the partnership. Just think of how you feel around a nervous, upset, or super excited person. Now multiply that by 20 because your system works more effectively to stay calm around these folks, and you will no longer wonder why we can’t always be purposeful in that type of presence. When you are dealing with a body that fires impulses as its default way of being, a partner needs to be someone who not only doesn’t add dysregulating energy, but someone who diffuses it.

I am not even touching on the need to have practice with someone so they do the work of a partner correctly – proper board placement and angle, being able to identify impulse and misfires from purposeful spelling, joyfully helping with continuation, and many more nuanced skills that can be learned as the doing of a Communication Partner. These skills look simple to an observer, however what the naked eye doesn’t see is the careful thought and practice that builds the fluidity between partners. That knowing that comes with practice, trust, and learning from mistakes and misteps. That knowing which is the developed being of a skilled Communication and Regulation Partner.

I know that this probably doesn’t answer the question completely for every inquiring mind out there, but I’m damn proud of my explanation. I love that I can more fully respond if people have any questions about what I said, or about things that I didn’t say. A communication partnership is a sacred and trusting bond between two people. You will know if you are someone who can step into that with a new partner because you are being Communication and Regulation Partner.

Lovingly,
Jordyn

Image credit: ID 97729681 © Olivier Le Moal | Dreamstime.com

How do you interpret dysregulation?

What are things that trigger dysregulation in a nice human? I think sometimes people forget, or have been conditioned to disbelieve, that not all dysregulation is a sign of distress. Think of how your heart pounds in nervous anticipation of getting something you really care about (e.g. your first kiss, seeing a concert, how amazing it is to be with friends, etc.) or how about when a scene in a movie really touches you and you well up. These, and other, situations are just normal occurences and your nervous system manages them in a socially “appropriate” way. How would you feel if your family removed you from these types of circumstances?

These same types of circumstances, where joy is present, can trigger impulsive actions from our apraxic bodies. It is like we only have one gear for heightened emotions, at least in my experience. Joy looks exactly like distress! Can you imagine having an action that you mustered as a small child to express your need to be removed from an overwhelming situation now being stuck so that every time you lunge at your mom and pinch her cheeks? Or where you managed to avoid an impulse that may hurt another instead resorting to exerting an impulsive action on yourself to get attention, and now having that be stuck?

Joy becomes slightly tainted if it triggers those around us to experience stress. Joy is a strong emotion and may surface as someone like me acquires the skills to communicate. My amazing friend Andrew shares about this so eloquently below.

Can’t give you a complete list of good hints of what else may cause dysregulation, but here is a list of some categories you can use to narrow down your guessing game until your non-speaker has the ability to tell you that you are right or oh so wrong! Please know that Mom was only right about the symptom of my aching legs with weather, otherwise her guesses were pretty cold.

  • noises
  • smells
  • visual overstimulation
  • weather
  • tastes
  • textures
  • hunger
  • GI discomfort
  • strong emotions inside
  • emotions felt from others
  • illness (e.g. toothache, headache, sore throat, etc.)
  • unfulfilled expectations our bodies have
  • etcetera

Love just caring to help in this way. There is nothing wrong with trusting your momma gut, I always loved Mom not matter what. She was doing the best she could for me with the information she had at the time. With access to communication we have access to working as a team to support regulation. I love that I can create goals and plans of action in doing things I would otherwise be dysregulated around – professional basketball game, going caringly to theatre, joining groups of friends, etc. Loving parents have so empowered me to manage my body, and the joy of mastering a situation or being empowered to pull the plug because I know my limit before meltdown best is such a gift. Self-determination is where it is at!

Ok, I know this started in one place and ended somewhere else, but I love letting my writing lead me. If there was something you thought I could expand on, or a question I left hanging out in the wind, please comment and I promise to answer.

Lovingly,
Jordyn

Image credit: ID 21556837 © Oleg Doroshenko | Dreamstime.com

I love my kiddy videos!

A brave mom asked about stopping her teen son from watching kids shows in a group my mom and I are part of. I thought “this is perfect for a blog.” So, here is my experience with my particular flavour of kiddy show viewing – Baby Einstein, The Wiggles, Hi-5, Baby Genius, Blue’s Clues, and “the oh so dreaded by Mom” Boohbah.

I am wanting to share how these videos are both supportive and limiting to me, in hopes of educating in what may possibly be happening with others. I can only speak for me as my own best expert, and would love to hear from my peers about their personal experience too. Maybe I should add lesson questions to this blog for those brave CPs that want to tackle the challenge of discussing this touchy subject. (If enough people want it, I’ll do it.)

If you see me at Conferences or gatherings, out to dine at a restaurant or waiting for an appointment you won’t find my trusty iPad in my hand. I made a conscious choice to not have access to YouTube in most outside of home locations. There are good reasons for this that I won’t go into depth about, but let’s just say that no access is less impacting than unreliable access.

Here at home (or any home away from home) I like having access to YouTube. Power and internet outages are both an opportunity to practice restraint and delayed gratification, as well as maddening to watch my body flip out over something absolutely I understand.

Let’s look at what my lovely surfing is for me.

Joy is a calm body where I am using my energy on productive pursuits – writing this blog, attending an online class, learning from listening to an audiobook or documentary, or even enjoying a blockbuster or cheesy movie. Not having lovely surfing time means my body overloads a lot faster so I can’t be as productive. I know, it sounds counter-intuitive, but for me it really isn’t.

You see, what you see is my whole self engaged with the video moreso than anything else. The exact opposite is true! The video and flipping between them is so in the background for me. It allows my auditory and visual systems to chill the bleep out, so I can focus and not expend so much energy on maintaining regulation. Being productive is my focus, and I’ll use whatvever works. If my body is more regulated, I won’t use it as much. I go through phases.

Another crazy bonus, my body found a site where I’m learning all kinds of languages from listening to and watching my beloved Baby Einstein favourites in every language imaginable. I’m covertly preparing for world travel. Love, Joy, and Peace won’t get to be created in the world without some good Baby Einstein watching. I bet that was Julie Aigner-Clark’s covert plan all along. But I digress.

Now, for the limitations I deal with.

Joy is being able to live free from lovely kiddy nonsense. Probably why outside of the house I’ve purposefully banned myself from any reliance on YouTube. I am building some tolerance in probably the more challenging circumstances with an intention of it lovingly spreading to home. The problem being that the work of self- regulating outside the home leaves me so drained, that I need it at home to either recover or in anticipation of an outing. Maybe not my smartest plan, but the studly ambassador in me wants to be iPad free in public.

Other downsides are that sometimes my body has to finish, or find, something before I can stop using the videos. I have worked on this a lot and it is much easier to “let go” than it used to be. Mom is good at interrupting me and getting my body to do the thing needed in the moment – letter board talking with an intentional beginning “go” prompt or putting the iPad to sleep to move to a non-iPad activity.

I think another point to highlight is that your expectations and assumptions as neurotypical parents should always be questioned. Our wants and needs are usually different than you would expect or assume. When you have access to communicating with us ensure you check in and:
– don’t lay your wants on us;
– calmly get from us, the experts on us, what the payoffs and costs are
to an activity;
– create a plan with us for how to manage something we both want
to change;
– and be prepared to work the plan calmly and check in to alter where
needed.
Yes, I know you are the parent and think you know what is best, and you need to be informed and have our buy in to have the endeavour be successful and relatively easy on us both. My point is to keep checking in with yourself about your intention and who you are really trying to provide comfort for. Your discomfort is not our problem.

Lovingly and shooting straight,
Jordyn

Image credit: Photo 32686261 © Aquamila – Dreamstime.com