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

I am a barometer!

Good to have a day of clear sunshine! I have relief and access to more energy and control. So many I care about have hindering good barometer bodies too!

I learned early on in life that I could be a loving predictor of clear weather or incoming low pressure systems. It starts as a dull ache and grows in intensity as the weather system approaches.

When I was little I would curl up in my play partner’s lap. I would take their hands and put them on my achy legs and make them rub them. I loved that they so clearly got my communication without words! The added pressure and their support helped me maintain a level of composure when I could have otherwise been melting down.

Caring Mom has a hard time with this piece of my puzzle. Love that she wants to be able to help, but want her to just love me and go with the flow, not worry. I am lost without having her grounding and regulating support these miserable weather days.

Mommy has a very grounding and regulating presense that I know her clients also appreciate. I appreciate the families she is working with for being so understanding and flexible when I need to have her to myself. I get her hesitancy about rescheduling given her commitment to my peers and know that piece of Mom won’t go away. Plenty too caring to not have tinges of guilt.

I want to be someone who is grounded in my own body and doesn’t rely so much on outside assistance. I have come a long way with this over the last year, learning so much from working with Suzy Miller. There is more to accomplish and I will get there.

To my peers, I hope you good loving beings are allowing yourselves to communicate accurately about things that drain and dysregulate you. Our parents want to create paths of least resistance for us, for our inner selves to shine. The more they understand the more they can do this. They hate the guessing game more than us. Don’t people please or minimize the impact, it hinders both your intentions and theirs. Tell it straight!

Jordyn

Photo credit: ID 168062029 © Tom Meaker | Dreamstime.com

Clever and Caring!

Love, Joy, and Peace!
Hope last night was a good night for all.

Let’s make this year about creating a wave of peace on this planet! I believe we are completely capable of bringing forth a loving clearing that hate, war, rascism, and ableism can not exist inside of.

Let’s be conscious, clever, and caring about how we use our words and the massive reach they have with social media. Let’s speak caringly to each other and use cool, calm, and measured language when being an advocate for ourselves and others.

Nothing ever becomes of unnecessary badmouthing of others. You may feel a momentary lightening of your anger, however growing agreement for your perspective makes only more fuel for an unnecessary anguish you are creating for yourself. Try instead to get into that person’s shoes, look from their beliefs and perspective, and find common ground. Only then will things move forward with ease.

Being one voice that listens powerfully creating a space of deliberate understanding can open up the lines of communication, love, and cooperative problem solving. Resistence and defensiveness only create stuckness and distance.

You have the power to intentionally create an environment of compassion, cooperation, and community around you. It is your choice and only your choice.

Let’s also not forget our inner community. Be compassionate with those parts of ourselves that we have been resisting or tolerating, but not loving. Love, Joy, and inner Peace is where it all begins.

Happy New Year and New Decade,
Jordyn

Christmas Celebration

Merry Christmas everyone from Michael Pallett – Jordyn’s Dad.  The blog today is a Christmas surprise for Kelli.  This is the first blog that Jordyn and I have written together, without any help from Jordyn’s usual and wonderful communications partner.  Enjoy.

J:         I want to start by welcoming Daddy to his first ever blog.

M:       Thank you Jordyn.  Can you explain the theme of this inaugural Jordyn/Michael Blog?

J:          Sure, today we are celebrating Mommy!

M:        Good!  Since this is the holiday season, celebration of this very special woman is perfect!

J:          I love Mommy very much.

M:        Me too. I have loved her from before you were born.

J:          Ha Ha.  This is not a contest.

M:        That’s true.  But I wanted to say that she has been in my heart continuously – and that for me was the very beginning of our family.

J:          I really like that way of putting that.

M:       What are some of the things that come to your mind when we speak of celebrating Mommy?

J:          I love how she is always thinking of how to make a difference.

M:        Do you have an example of that?

J:          Yes, how she is keeping alive my getting people to be in my life.

M:        What’s an example of that?

J:          I can get Mommy to always pick loving people to spend time with from Graciela to all my pals worldwide.

M:        To me she is a gateway for you and all the people she works with to be a community of voices and souls.

            She is funny because she probably wouldn’t describe herself as a social butterfly.  I remember I was trying to meet her at a party and practically had to chase her around the room (but maybe that was just me :o).  Anyway, today she is all about opening doors for so many people to be social with each other and their families – in a way so much more profound then small talk at a party.

J:          I think that is an awesome way of describing that.  I love how she does that. I love you too for giving her the space to be that.

M:        We, I mean all three of us, make a good team.  None of us would be who we are without each other, I think.

J:          I feel the same.

M:        OK, back to Mommy.    I also want to say how proud I am of how she is with you and all the people she is communications partners for.  I told her recently, and I think it is worth repeating, she is not only skilled with you and everyone else, she is masterful at balancing technique – and the nuances, with seeing the beauty inside of each and everyone of her clients.  When other might only see a crazy body, she sees the soul behind the body, and somehow can embrace both; respectfully inviting each of you all to step beyond what is normal, to what is extraordinary.

J:         I love that.  I would like to wrap up by saying a bit about my experience with good Mommy.  I love her so much.  She is a person of integrity, who is always at the centre of my life.  I love getting to spend time with her, whether it is in a class, or curled up watching a cheesy movie.  She is always the best!

P.S. Mommy make sure Sharyn gets props for picture
Featured Image Courtesy of Sharyn Ayliffe Creative

Holiday Expectations

Not every kid is enamoured by the “magic” of Christmas!

I remember being little with no means to communicate and loving to be with my family during this time of year. I am less fond of the times where we gathered in large groups.

To remind everyone, I am a B.S. Detector. I feel the disconnect between the outward “being socially appropriate” happiness and how someone is feeling inside. The energetic inconsistency is like a giant drain sucking my good energy spiralling down it. Lower energy equals less control over body, and with the extra sensory input at this time of year (lights, music, smells, the loudness of cheer, etc. ) my little fuse before meltdown burns quickly.

I’m telling you this not to dampen the joy and happiness experienced at this time of year, but to educate you. Not all kids want to sit on Santa’s knee or allow every relative and friend to love on them. While maybe not a sensitive B.S. Detector like me, the energy required to stay regulated at this time of year is huge.

Your want to give your kids that special experience you had as a kid may not jive with their wants. I would rather have time with small groups of family than I bunch of presents that I won’t independently use or play with. The joy of being with people I love, who are being authentically themselves, always trumps any gift.

So the moral of this Christmas story is to check in with yourself as a parent, and assess if your expectations are more than is reasonable for your little autistic bundle of love and sensory sensitivities to handle. Then adjust your expectations and plans so that everyone can experience joy and happiness.

(P.S. Same is true for me about Hallowe’en).

Have a very joy-filled holiday everyone!

Joy and peace,
Jordyn

Can wired and tired be all gone?

Fun set of circumstance I seem to live with – so darn tired that I want to go bed, but my body chooses to wired and mischievious at bed time.

Can you caringly believe that I, and my peers, have little control over the nonsense that results from this totally annoying combination of events? I listen to my body signals saying “snuggle in”, then it giggles and heads to the kitchen to forage, and I’m not hungry. It is frustrating to say the least.

I go through periods like this occasionally, and post Mom as a sentry outside my door. Daddy is a weak door guard who falls asleep in 20 seconds not to be disturbed by the loudest noises. Bed time can be an exercise in happy snuggling with Mommy to ground my body, then just as I close my eyes they pop open, I kick Mommy out, and start some silly sequence or script. Then she falls asleep on the couch in next room and I go rip the blanket off of her to come help me… and repeat! Torture for both of us, and yes, I’m 16 and snuggle with my Mom… get over it.

I think my point here is that I have no explanation and no control over this nonsense! I’m not looking for pity or your advice. I am hoping that at least one family can relate and feel a little less alone, because I certainly have no advice.

This too shall pass,
Jordyn

Photo credit: ID 162562212 © Maxkolmeto | Dreamstime.com

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