Cheeks Speaks, Vol. 2

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Today, Cheeks answers more reader-submitted questions. The words in capital letters were spelled by him, using a letter board to point to each letter. It is a low-tech form of augmentative and alternative communication (AAC), that allows for us to access his cognitive abilities while accommodating his motor planning challenges.


“How would you like people to approach you and talk to you/how do you think people should approach and talk to anyone nonverbal?”*

YOU SHOULD MAKE MORE OF AN EFFORT TO SPEAK TO US HOW YOU SPEAK TO MOST PEOPLE. BECAUSE MOST OF MY NICE FRIENDS WITH AUTISM REALLY DO KNOW WORDS EVEN THOUGH WE DON’T SPEAK.

“What do you love most about yourself?”

I LOVE MY SENSE OF SEEING MORE STORIES IN EVERYTHING.

I also followed up with this, which was my own question to him and not submitted by a reader: “Lots of people are seeing these posts on the blog. Do you have anything you want to say to them?”

MY MIND IS CHANGING THE WAY THE WORLD SEES NONSPEAKING PEOPLE. THANK YOU FOR LISTENING.


Have a question you’d like Cheeks to answer? Please feel free to post in the comments below, or via the “Contact” link at the top of this page. You can also ask follow-up questions to anything previously answered.

* The commonly used terminology used to describe a nonspeaking individual is “nonverbal.” We prefer the term nonspeaking, for reasons explained here.

 

 

Cheeks Speaks, Vol. 1

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The author with his letter board.

As promised, I’m handing over the soapbox to Cheeks from time to time. We have a list of questions posed here and on Facebook, and he chooses which one we will tackle from a question jar. I read the question(s) and he spells his response.

A few notes to understand about this methodology:

All text written in capital letters is Cheeks’ originally written material, because he spells on a laminated board that has all capital letters. At some point in the future if he begins working on a keyboard, that text will appear exactly as he enters it.

Communication partners (in this case, me) never edit or correct a speller’s words. He has spent his whole life not being able to share those words, and so I honor his original thoughts by leaving them exactly as he spells them.

Finally, his answers may be short but they represent a lot of work. It takes enormous mental energy for him to execute purposeful movement, such as point to the right letters with accuracy. I am sure that readers of this blog will see his answers become lengthier with practice.

And so, without further ado:


This question was posed on Facebook, by Kristi E., who asked: “What is something you want to be doing by, or in, the year 2020?”

I WOULD SAY MY AUTISM DOESN’T STOP ME VERY MUCH REALLY.  MOST QUIET BOYS WANT THE SAME THINGS AS OTHER BOYS. TWO YEARS FROM NOW I WANT TO STILL BE LEARNING NEW THINGS.

Our friend Kurt R. (the creator of Cheeks’ pseudonym) asked, “Do you like being called Cheeks McGee?”

IT’S NOT SO BAD.

And lastly, Brandie S. asked about her favorite number. She is aware of Cheeks’ synesthesia and wanted to know,  “What color is 47?”

FOUR IS WHITE. SEVEN IS DARK BLUE. I SEE DIGITS AS SEPARATE COLORS.


He loved being able to do this and I’m sure he will want to do more going forward. We have several questions in the jar already, but we’re always looking for more. Feel free to post comments here or via the “contact” link above.

 

 

Handing Over the Reins

It’s been a while since I’ve posted. Cheeks and I have been working hard to get better at our spelling to communicate, which is how his (and our) world has opened up. That has taken priority over my musings about autism parenting.

I’ve always been clear that what I write here is my story, not his. I don’t presume to know what it’s like to be autistic, and it was not my goal to represent that here. I also believe that nothing about him should be discussed without him, so everything I did write about Cheeks was always with his knowledge and permission.

With that in mind, Cheeks has indicated to me that he wants to use this platform to start teaching the world about autism and the related misconceptions many carry about what it means to be autistic. So, in the coming weeks I will be handing the reins of this blog over to his words, answering questions you have asked.

This may be sporadic. As his communication and regulation partner, it’s my job to protect his clear thinking by not pressing too hard on the emotionally difficult things. But there are also moments when he’s in the zone with his spelling energy and I know that when that happens, he would like to take the opportunity to offer his first-hand experience with autism to the world.

We’ve already begun gathering questions from friends and family, and we now open it to all readers here. What do you want to ask my wise young man about autism (or about anything else)? Use the comments section on this post, or send a private message via the “Contact” link above.

We look forward to hearing from our community!