Get In Control, Non-Speaker!
12 months private mentorship program for non-speakers and their parents to gain feeling and control
Hey there, Non-Speaker!
In many spaces on and off of the internet there are a lot of resources directed at parents and professionals supporting you, non-speakers. And even in places that presume competence and have understanding of the sensory-motor paradigm of autism, still, a lot of the times you are not addressed directly and supported through another person.
This is not one of those programs.
Get in Control, Non-Speaker! is first and foremost a program for you, the non-speaker, along with resources for parents, so that the parents can support your effort in the best way possible.
Dear parents,
Trust that even if your non-speaker is not yet an open communicator and is unable to give you direct feedback, your child is capable of this work and will know exactly what to do. Read this page with your non-speaker and, to whatever degree possible, make the decision together.
Get In Control, Non-Speaker!
A program for non speakers and their parents to gain feeling and control of their body.
When I was little, I didn’t know how to feel my body.
The best I can describe, it is like you have an open vessel that needs filling. I just floated in it, and no one around me understood. The body moves on its own and it seemed like there was nothing one can do.
But now I know it is not true.
You can fill the vessel with your mind.
Literally.
How can one describe the feeling when you go from not feeling their lungs to having feeling? It’s magical. What is even more magical is that my mind did it.
Again and again striking the wall of nothing, feeling nothing, until there is something.
A faint whisper that becomes louder and louder every time.
I don’t think it is at a hundred percent yet.
But every step forward is a new feeling in the body that I didn’t have before. It is like my body is waking up from a very long sleep.
It is not for the faint of heart.Â
It requires even more patience than you think you have, and practice multiple times a day.
For me, it took about a month of daily work to start feeling my lungs.
Can you commit to that to change your life?
Just doing it once is not going to change anything, but overtime of consistent effort you will be amazed at what your mind is capable of.
Once you are able to feel your body especially insides, the movement becomes easier to start.
I want to emphasize the internal feeling and not just the parts of the body.
I’ve started to feel my hands and legs for some time now but it didn’t help moving independently. Lungs and breathing is when everything shifted.
Feeling my body’s breathing and heart beat let me move my body finally on my own.
So the role of ANS (autonomic nervous system) in purposeful movement is undeniable.
Hey, I’m Rafael!
A non-speaker destined to flip the script about what non speakers are able to do in this world.
My mission is to help you do what I’ve been able to do for myself that has completely changed my life and gave me hope for the future: moving my body on my own without relying on someone’s prompt or being dragged by random stimuli I have no business taking.
It is far from perfect and I know I have a long road ahead mastering this.
But the difference when you can’t control without help at all vs being able to do something, is the difference between losing hope and knowing you have a chance.
How can you live fully when you can’t control your body? You can’t.Â
It is the biggest breakthrough to be able to figure this out and I didn’t do this alone.
My mom, Daria Kotenko, is the lead scientist and my biggest support.
Together we went through articles and learned scientific principles that allowed me to get to this point.
Everything we teach is grounded in science and mechanics of the human body.
I don’t know how far I can go or how far any of you can take this.
All I know is that every day l am able to do things I could only dream about just a few months ago.
It gives me so much hope.
And that is what I want for every non-speaker out there.
Rafael
We want to be honest with you:
When Rafael says “it’s not for the faint of heart” he means it. And this goes for both non-speaker and the parent although in different ways.
For you non-speakers, this means taking your destiny in your own hands, practicing this daily for a few hours, overcoming all the internal doubts that may arise along the way until you break through the wall of sensation and start feeling your lungs.
It may take longer or shorter for some of you, but the science is clear: this is possible. Our nervous system - and with that sensory system - is plastic and we can change it with repeated thoughts and practice.
Here’s the catch though…
You can only do so if your nervous system feels safe. Sounds easy enough, right?
The reality is, our nervous system decides if we are safe or not based on sensory information coming in. Which for most of you, non-speakers, is going to be all over the place.
And so creating safety then becomes not so trivial task that falls on parents and people around you.
Dear parents,
While there will be few exercises and learnings throughout this program for you, the biggest task for you, should you move forward with Get In Control, Non-Speaker! is letting go of “doing” and instead creating space for your non-speakers to do something for themselves.
I can speak from personal experience:
when you have spent years hunting down another therapy that is going to be “it”,
when you fill the schedule to get as much done as possible,
when you see how much still remains to be done….
You don’t want to “waste” any minute and so most non-speakers find themselves in a never ending circus of activities.
But what we need to understand is every change and every environment is a potential for your nervous system to go into fight or flight. When the information coming from ones’ senses is not just different, but fluctuating… every change, every noise, every demand feels like outright assault.
You can’t build for the future, when you are fighting for your life.
And so none of the work can happen if one has 30-40 hours of activities every week.
So my dear parents,
This will mean for you to learn what the safety of the nervous system is like, including your own.
This means letting go of the endless “doing” on your part and trusting your non-speaker to do the work.
Yes, even if they are 5 or 25.
Yes, even as their body moves in various ways.
Yes, even if it looks like nothing is happening.
This is what trust and presume competence means.
It’s not just when it’s convenient, or when you have feedback that confirms and reassures you.
I had to learn to trust that when Rafael asks for time and space to do this work, and asks to cancel therapies…
It is not that he is a lazy 9 year old who doesn’t know any better and I’m the authority here... It’s that he knows his body more than anyone else.
Not only how it operates now, but what it needs and how to reel it in.
How you move determines how you live.
Moving intentionally is not just about being able to get dressed or play a game.
It is about making your own choice and having a full life. - Rafael
Yes, this information - on how to reel your body in and how it works - was hard won and you will have all the step by step for you, so you both don’t have to start from scratch.
But more importantly, dear parents, I hope you hear me when I say this:
We can’t fill an internal hole inside of us by dragging our kids to yet another therapy.
You can’t suddenly feel like you’ve done enough because you’ve taken them to another therapy.
You can’t suddenly feel like you will have confidence in their future if you just did another thing.
We can’t resolve internal pain by external input. (Ask me how I know)
So our job in this process becomes…
Creating safety for our non-speakers and letting them do their job…
And doing ours:
Looking at our feelings inside.
Looking at how we make ourselves feel “enough” through our children and letting go of that.
Because I can yap about safety all day long here...
If your - as a parent - sense of “enoughness” and certainty and self respect comes from taking your child to 10 therapies, you just ain’t going to do it.
You will find all the reasons why it won’t work, or not now, or they are too “OCD, stimming, young, old, ____” to do this.
So yes, this is not for the faint of heart.
And this is for those who are ready to change their lives now, to have a different lives later.
What does this mean in practice?
In practical terms, this means creating time and space: at least 3-4 hours daily for you, the non-speaker to work on your body and mind.
Limiting the amounts of going outs and doing things (even things like going quickly to the store, my lord, grocery stores are a total nightmare for most non-speakers).
Committing to 3 months of reduced activities and as much safety in the nervous system as possible, so that we can recreate a stronger foundation that can actually handle things.
So often we - as parents - are taught that autistic people need to be pushed out of their comfort zone and if we don’t push, they will never get comfortable or try things.
And in many ways this is true if your nervous and sensory system is all over the place.
If you don’t feel gravity consistently, the sound is overwhelming and how much of your body you can feel changes all the time….
Would you want to try new things on top of THAT?
This work is about building brick by brick, neuron by neuron a sensory foundation that provides more accurate sensory information....
...and can handle stress of going out and doing things - because internal information is accurate and can motor plan and therefore move the body on your own.
This is the work where we slow down to speed up, so that you can have a chance of a very different life down the road.