Several months ago, I shared that we were embarking on a new journey in our never-ending endeavor to help Maci learn to communicate effectively. We started using Facilitated Communication – a therapy called RPM Communication. Then I reported that we had transitioned to S2C, another form of Facilitated Communication, to train Maci to communicate through the use of a letter board.
In continuing our immersion into S2C, I recently signed up for a Parent Cohort series and class to help introduce and expand the practice – to train parents on how to effectively use S2C. The group meets through Zoom with participants from across the country – Florida, New Jersey, Ohio, Oregon and 2 of us from Washington. The age range of the kids vary as well, from as young as 7 to as old as 22.
Being a new parent to S2C, I was surprised to learn that all of our parent challenges and experiences are very similar – not as unique or individualized as I had imagined. The two most highlighted and emphasized concepts for the class, so far, (we’re on our 3rd session) is “presuming competency” and “motor planning”. Both concepts incredibly important when using S2C.
What is “Presuming Competence”:
“A key component to presuming competence is to become aware of the prejudice that currently exists regarding autism and how these ingrained beliefs harm not just our children, but ALL autistic people. Like any prejudice, based on layers and layers of misinformation, misperceptions, and misunderstandings, we must be willing to acknowledge our own beliefs before we can begin to deconstruct them” – Ariane, mother of Emma, an autistic child
“Our presumption of competence aﬀects: 1. How actively we engage the individual, 2. The level of information/materials we oﬀer, 3. How often we talk to the individual, the manner we use, and the respect we oﬀer, 4. How we speak about the individual to others, and 5. How much eﬀort and patience we use to resolve challenges.” – Hussman Institute for Autism
In my experience, presuming competence has been the most frustrating challenge in advocating for Maci, primarily at school. Because of her motor, sensory and apraxia issues, she does not respond or communicate. Therefore, the presumptions have led to the following critiques of Maci’s competence in evaluations: “she doesn’t know”, “she doesn’t understand”, “she doesn’t express interest”, “she refuses to participate, or refuses to comply”. Those presumptive statements have all been included in reports and evaluations by her teachers and school staﬀ.
It is statements like these that fuel my drive to find a way for Maci to express herself and communicate more effectively.
Retraining the brain and how it responds to demands.
A big component of S2C is rewiring the neurons and responders in the brain. No simple task! Asking the brain to change how it inputs information and instructions is complex and hard work that requires time and patience. Interim results can lead to increased behaviors including unwillingness to perform, “loops” and Obsessive/Compulsive Disorder (OCD).
What are loops? Loops are essentially repetitive behaviors. Examples can be, asking the same question over and over, repeating the same conversation, listening to the same music. A loop gives a sense of control and comfort to protect us from things that feel foreign and unknown.
It’s like when we learn anything new, such as driving a car for the first time. Our brain is doesn’t know which pedal is the gas or the brakes. It doesn’t know how far to turn the wheel. It’s never relied on a rearview mirror (or rear camera these days!) to see what is behind us. It’s unfamiliar. And, when faced with unfamiliar stimuli, our motor planning and subsequent actions are often awkward and uncontrolled. We feel anxious and confused. However, as we continue to learn and practice our motor planning improves and our brains learn the new skill – creating a new pathway. In our example, we become better, more confident drivers. S2C is using the same method to retrain the brain how to communicate. And as it is introducing a new way to process communication, for a while it will be unfamiliar and more taxing, especially for people with motor and sensory challenges.
So, tying the concepts of “presumed competency” and “motor planning” together, as we ask our brains to think differently, it’s imperative that we presume competency and be patient as we do the work on creating a new pathways and skills for the brain to adapt to. Creating the ability for motor planning.
With Maci, it is working. We recently had the opportunity to work with the founder of RPM, Soma Mukhopadhyay. She came to Seattle to work with students and their families a few weeks ago. I do not have the video yet of her sessions, when I do, I will share them.
In one of these sessions, she had Maci draw a picture of something she had seen, then asked her to “tell me what you see. Tell me your story about the picture.” With Soma holding the letter board, Maci pointed at letters and spelled the words she wanted to use to tell her story about the picture. What a moment for this mom! It was the first time I had seen Maci communicate all on her own! It was incredible and so empowering for her. That’s not to say that it wasn’t very diﬃcult and not without a lot of outbursts and crying. She struggled tremendously but persevered and worked very hard.
Here is one of her poems
I look forward to sharing and continuing our journey with all of you. I hope you find the information helpful and knowing you are not alone. As our journey continues with communication, I wonder how it is going for other kids and parents? I’d love for you to share. Our information and resources are here to help you down your journey and find answers.
Marikay Cuthill is mother of Maci, a vibrant, curious 17-year-old on the Autism Spectrum, and the founder of Maci And Pebble, a community dedicated to helping people navigate autism by finding answers, direction and peace of mind. Learn more at www.maciandpebble.com
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