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Dancing

Writer's picture: Sandra VerhoeffSandra Verhoeff

This post is a result of a question from a beautiful friend.




“Why can’t just anyone pick up a letterboard and talk with Luke?”


Especially me? Why can’t I — his mom—do this?


Luke and I have been working on this communication program together for a couple years, but we have not reached a level of “openness” or “fluency” (Luke being able to fluently spell his internal thoughts and opinions). At this time, Madison, his practitioner, is the only one in Western Canada able to have this connection with Luke. Madison is a trained communication practitioner, a Level 3 of the 4 Levels of RPM (Rapid Prompting Method) training. She is a rock star at this. She has been a certified practitioner since 2019, and currently has 60 clients in the Calgary area, as a full time job. She has a brother who is autistic, and she is an empath. Being an empath, or someone who has strong intuition, equates to a sincere compassion for people, especially those who have diversabilities.


 

Two years ago, I connected with I-ASC (i-asc.org), and was able to sign up for a specialized 8 week online course just for parents. I was fortunate to have the incredible Kelly Berg as my mentor and teacher. The lack of skilled practitioners (currently only 2 qualified in BC) compels parents to start the program on their own. During the course, Luke and I would practice together and share our videos for critique so that we could slowly learn, finesse, improve. We would do lessons, three to five times a week, which have a hierarchy of questions differentiated by colour. Luke and I have done hundreds of lessons over the last two years.



KNOWNSEMI-OPENPRIOR KNOWLEDGEMATHOPENVAKT (Visual Auditory Kinetic Tactile)


Green: Questions that have only one correct answer that can be found in the lesson. Example: “What was astronaut Christa McAuliffe’s profession before she was an astronaut?”


Orange: Semi-Open. Questions that have a small group of possible answers that are in the lesson. Example: “Name one astronaut on the Apollo 13 mission.”


Blue: Prior Knowledge. Questions that were not specifically addressed in the text of the lesson, but are likely to be common knowledge for the potential student doing the lesson. Example: “Houston is in Texas. Name another city in Texas.”


Purple: Math. A question that uses numbers or requires calculation, and if necessary can be answered using the number board (number answers can also be spelled out on a letter board). “Neil Armstrong was born in 1930. How many years ago was that?”


Pink: Open or Creative Writing. A question that requires summary and synthesis, opinion, or is creative. “What do you think about private citizens becoming astronauts?”


Red: VAKTivity. An extension activity to support visual, auditory, kinesthetic, or tactile learning, without using the letter boards. Examples: creating a poster, checking out a globe or map for the location, doing a physical exercise, listening to a song, or watching a video about the subject.


Another great resource on the whys and hows of spelling as communication https://i-asc.org/wash-rinse-dont-repeat-lessons/


 

So as you can see, there’s a method to master. Our kids struggle with apraxia/dyspraxia, a brain-to-body disconnect. Our kids are “trapped”... their brain is intact, but their body is not connected to their brain. For example, their brain wants them to pick up the pen on the table, but their body picks up the spoon. Their brain wants to select the right answer “red”, but their body points to “yellow”. Their brain wants to open the bathroom door, but their body opens the cupboard door. Can you even imagine how frustrating that would be? And on top of that, they can’t talk... their brain has the whole conversation in their head, but their mouth can’t vocalize the words. (I ask my women friends to imagine this!??!). How do you get your brain to type words on a keyboard? Even though you know how to spell the word, your body won’t hit the right letter. How do you get your fingers (a fine motor skill) to hit the right letters? We are also just starting to learn that a lot of our kids also struggle with complex vision issues. In Luke’s own words, he struggles with “convergence” (to meet at a point) and he doesn’t think his brain is connected to his eyes. How can he get his eyes to look/find the letters on a letterboard or keyboard?!? What a struggle!



With Spelling as communication, students begin with 3 large stencil boards, because it narrows down the number of letters to look at. There is no doubt they know how to spell the word, but their eyes have to find the right letter, and then the practitioner coaches their arm (a gross motor skill) to physically point to the letters. This is a practiced motor muscle skill that takes A LOT of hard work and A LOT of practice. At the beginning, specific prompts from a trained supportive communication practitioner/partner are so important. These prompts are slowly reduced over time until Spellers can find the letters easily without support. They slowly graduate to a letterboard stencil with 26 letters. And then level up to a computer keyboard. This is a long arduous process. Take a good look at a keyboard... there are so many letters, all small, hard for them to focus on, and it takes a combination of eye/hand coordination to navigate. An almost insurmountable task for someone struggling with apraxia/dyspraxia. There is more to the science behind it, but trust me, there is science. And more and more research is being conducted (including the HoloLens project at the University of Calgary). This research is critical in supporting the legitimacy of this method.


So, to explain the spelling program a little bit more clearly, we use a “dance” analogy (credit to i-asc.org). Imagine you want to learn to ballroom dance. You need a partner. And you both need to learn to dance, together. There are no “ballroom dance teachers” in Kamloops, so Luke and I started to learn to dance on our own. Luke has his struggles as a young autistic man (apraxia/dyspraxia)—not able to get his body/legs to do what his brain wants it to do; I am a mid-fifties flaky mom with a bum knee and no grace. So, we practice, and we dance, and we step on toes, and we glide, and we slide, and we fall sometimes. The progress is slow (and sometimes two-steps-back/one-step-forward). Our only support has been a variety of “ballroom dance teachers” who have zoomed in once in awhile and coached us through a screen. We persevere. Then one day, I realize that I am holding my young dancing son back. We just can’t seem to float across the room together. And sadly, I may never be able to. I’m just not a dancer, it’s not who I am. Finally, I admit defeat, which is a huge ego blow. Moms want to save the day and help their kids shine. But I finally realized I was hitting my head against a wall that was not going to break down. So, I humbly stepped aside, and called the ballroom dance teacher. I hired her and flew her in from Calgary for 3 days to see if she could teach Luke (or maybe even me?) the next steps. She showed up September 10, 2023, at 4:00pm, and she politely and respectfully asked Luke to dance. Within 20 minutes they were floating across the room fluidly, perfectly, and in time and tune. To watch them was overwhelmingly beautiful. Just like in real life, watching two people dance flawlessly, never giving away the hundreds of hours of hard work it took to get there. It has been breathtaking—a thing of beauty. Madison does credit me with “laying the groundwork/teaching the basics of dance”, but I could only take him so far. I do hope to “dance” with Luke one day, but he and I have decided to take a little break from lessons together.


Many parents struggle with being “open/fluent” with their children. Imagine the relationship that develops over 19 years between a mother and her nonspeaking beautiful son... we are so in tune with each other. He does not need to speak for me to know what he wants. We are so connected on a deeper level. I’d like to think that at least 80% of the time I was saying the right thing when I spoke for him. Add to that the intense expectations and deep desire of wanting to communicate freely with Luke. Nothing like pressure! When I was finally able to ask Luke what I can do to be open/fluent with him, he said these words exactly: “less pressure.” Ouch. I want it so bad, but it’s not currently possible. Yet. Luke will continue to master this with Madison’s help. And I will continue to honour the direction that Luke sets in his communication journey.


One day he will transition to a computer keyboard and be able to type his thoughts.


One day he will achieve the ultimate dream of putting on a HoloLens virtual headset and talk through it independently (without a communication practitioner).


One day he will not need his mom, because he’s living his best life independently.


And that is the ultimate goal of parents, isn’t it?


 

Watch this amazing video for an excellent explanation from Elizabeth Vosseller, founder of I-ASC (International Association of Spelling 2 Communicate).



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Luke's emails are monitored by his family; we do our best to have Luke included in the replies. Responses from Luke may be delayed due to access to our practitioner Madison, who lives in Calgary. Please connect with us if you have any questions that we can try to answer. Any positive comments or words of encouragement are appreciated. Thank you for your patience, and your interest!

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This website is intended as a personal, information only website and not to be used as medical or professional advice. This is a personal autistic journey.

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