Readers of this blog know that Cheeks spells his communication. He does have some speech, but it’s unreliable; his purposeful interactions and access to education come from his use of a letter board. This has been the single most effective support we have found for his autism, and having it has improved the quality of life for our entire family, not just for him.
But, you may also have seen me mention that not everyone accepts the methodology of spelled communication that Cheeks uses. Some in the autism community insist that it’s not “real,” and that the things communicated using these methods are merely a result of influence on the part of the communication partner. That dismissal of Cheeks’ abilities is insulting. Stephen Hawking initially spelled to communicate, but the authenticity was never questioned. What’s the difference? The presumption of his intellect, that’s what.
My child is entitled to, and capable of, the same interaction and education that yours is. But he is not provided with it the way that yours is — based purely on an outdated, pejorative assumption that he doesn’t have the competence.
We’ve (mostly) adapted to that reality by homeschooling, and by advocating for and with Cheeks whenever we can. He is receiving an education, participating in his own health care decisions, and gaining a sense of agency for himself at an age-appropriate level.
But all of that is at risk of taking a huge step backward.
Recently, the American Speech-Language-Hearing Association (ASHA) issued two proposed position statements about spelled communication which expressly reject its legitimacy, and state, “…information obtained through the use of [these methods] should not be considered as the voice of the person with a disability.”
ASHA is a credentialing and standard-setting organization. If these position statements are adopted, what little access to letter boards currently in place will be removed. Acquiring an education, or even gathering research about best practices, will become non-existent. Thousands of voices will be silenced.
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.
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.
As you can probably imagine, there are many things that are hard about homeschooling. But they haven’t been the things I expected them to be before I started.
At first, I thought the hardest part would be making the decision to do it. That is so often the hardest part about anything, isn’t it? But once the decision is made, the rest seems to fall into place, as if the very idea of change was what was providing resistance in the first place. But, it was not a terribly hard decision. Cheeks was deeply unhappy in public school and growing more so every day, so naturally we had to choose to change that.
Then, I thought the hard part would be figuring out what to teach him. I guess that was a little hard, because I had to choose from a lot of options. There are literally hundreds of homeschool curriculum packages, and too many good books and other tools to count. I certainly wasn’t left trying to figure it out for myself. Once I realized that anything he learned would be more than he was learning while in school, it became much easier. I could pretty much start anywhere and allow ourselves to follow his curiosity. And the benefit would be better than just learning, it would be giving him the chance to love learning.
One of the hardest parts has definitely been the reactions I get from others. All of a sudden, everyone seems to be fixated on his socialization. It’s all I hear about from strangers and acquaintances when they first hear that we homeschool. I suspect these people who are so concerned have likely never bothered to reach out to a disabled person to be their friend, or gone into a self-contained classroom to see how much socialization disabled students in the public school setting are getting there (read more about that here). You would think that after all these years as an autism parent, I would have grown a thicker skin to the advice and judgments of strangers, but that’s only true to a degree. Long ago, I stopped being invested in their stares and comments, but you never get over it all the way. Nobody wants to be the odd one out. (Note to all: Please do not ask a homeschooling family about how their child is getting socialization. Just don’t. The question is inherently condescending. Thankfully, this question doesn’t come from my friends, but from casual onlookers.)
But the single hardest thing is the only one that surprised me. If you’ve read this far, maybe you see the common thread in the examples above: it all comes down to what the school system wouldn’t or couldn’t do to teach him. I am a lifelong fan of public schools and the teachers in them. My mother was a teacher, and I received an excellent education in public schools. But this homeschooling experience and Cheeks’ spelling to communicate has really broken my faith in the public school system for all but the most mainstream, typical learners.
As a taxpayer, I agree that the school system shouldn’t immediately embrace every new methodology that a parent has decided to try. They are already a system of infinite need and limited means, and there isn’t money or space for every unproven idea. But as a parent, I was shocked that the administration wouldn’t even observe a session. That tells me that they are more interested in adhering to their system, regardless of whether it might be failing him. And the only way to tell themselves that they weren’t failing him was to put the burden on him and assume the problem was because he couldn’t learn. These people, who at one time I truly believed wanted the best for him, didn’t want to even see what he could do if it didn’t already fit their expectations. Cheeks’ classroom teacher was even told he was not allowed to hold on to a book I had loaned him, and was told to turn it over to a supervisor until I asked for it back. The school district banned a teacher from having a book about education. Let’s just sit with that one for a moment, shall we?
The implications of this revelation have been enormous for me. I’m sad that Cheeks’ good teachers — of which there were several — have been denied seeing the daily “lightbulb” moments he has. Witnessing those moments are why many teachers enter the profession! I’m offended that anyone is able to dismiss Cheeks as unworthy of a true education; or who dangerously assumed him to have a cognitive disability (which is not part of any autism diagnosis) based on his inability to speak or maintain motor control. Because make no mistake, that is exactly what they were doing when they refused to make room for possibilities. And I’m now also questioning the advice I get for Cheeks’ older, neurotypical brother, because I’ve seen how the system can be so far off the mark. And to think, this entire system exists to teach our kids new things. The level of contradiction between their words and their actions is stunning.
It’s hard to change everything you once believed to be true. I’ve been faced with it more than once, so I empathize with the challenge I’m placing before the school system. Where I draw the line is their refusing to try. They wouldn’t even open their mind to the possibility that Cheeks could do what he was doing, and while my head can understand the challenge they faced, my heart can’t accept the result.
Mark my words: ten years from now, the people and systems that refused to presume competence in their students will be on the wrong side of history. When that happens, I will not be sympathetic toward the ones that had opportunities to do better but refused them.
I have recently started homeschooling Cheeks. The main reason for this is that the public school system refused to accommodate Cheeks’ spelling to communicate, because it is not yet an evidence-based academic methodology. This created numerous disparities in what they believed to true about his cognitive ability; and in turn, how they taught him.
We know that Cheeks is intellectually competent to be just what he is, 11 years old and learning at a 5th grade level. In school, he was being taught at approximately the 1st or 2nd grade level based primarily on his inability to speak or write correct answers. His most recent work samples sent home last month had him writing the words hot-pot-robot; answering reading comprehension questions from a three sentence paragraph; and doing two-digit addition and subtraction.
In our lessons at home, we are jumping in at a 5th grade level in most subjects. Core subjects such as history, science, and language arts can all be taught starting with any topic; and presenting the lesson at a 5th grade level of complexity. As it turns out, Cheeks loves to spell long, challenging words: his recent vocabulary in home lessons has included “hieroglyphics”, “archaeologist”, “xylem”, and “anesthesia”, among others. (Note: I was a state-level spelling champion in sixth grade, but spell check had to correct two of those words for me as I typed this post. He got them right on the first try.)
The exception in terms of the difficulty level I present to him is math, because the concepts build on one another as you progress through the subject. If you’ve never had 3rd grade math, you can’t really jump in at 5th grade. So for that area alone, I was preparing to teach at a more basic level. I spent the last three weeks researching methods to teach math facts in a fun way: one that would allow him to learn what he needs to know but did not teach it in a way that would talk down to a 5th grader, who in ordinary circumstances would have learned them much earlier. I bought and borrowed books, read lesson plans, and studied everything I could find.
Two nights ago at bedtime, on a whim, I decided to ask Cheeks if he already knows his times tables. He answered yes. I was surprised, but his speech can often be unreliable, and he says things that are not what he means to say. So I didn’t know if his answer was intentional. The next morning I still had all my books and lessons ready to go, and we sat down to start learning multiplication.
I warmed up his motor skills by giving him some of his beloved long words: “multiplication,” “accelerated addition,” and “mathematical.” I switch to the number board and this followed:
Me: What’s 4×4? Cheeks: (body language reflecting total confidence) [points to 1, then 6 on the board] Me:(thinks to self “What the…? Must have been an easy one for him.”) OK, what’s 7×5? Cheeks: [points to 3, then 5] Me:(???????) What’s 9×9?! Cheeks:(looks at me as if I have three heads) [points to 8, then 1] Me:~laughs like a giddy little girl~ Cheeks: Can I be all done now? Me:(still giggling) Yes buddy, you can be all done. You’ve earned the day off. I’m sorry I didn’t understand when you said you already knew all this.
It felt a little like that moment in the Scooby Doo cartoons when the characters say, “Let’s see who you REALLY are” before pulling off the ghost’s mask to find Old Man Jenkins up to a nefarious scheme.
I have never been so happy about the massive waste of my time all that lesson planning turned out to be. And I shouldn’t have been surprised by this. I am being reminded every day of how much he does know, and after all, he told me he knew this too. I just thought since it had never been expressly taught to him, how could he know it? There should be a name for how a person feels when they are both surprised but not surprised. Maybe I will ask Cheeks what that word is, he’s clearly more likely to know it than I am.
In the meantime, I caution those reading this to assume that he’s extra-smart in math simply because he’s autistic. Maybe he is, or maybe he’s not. That assumption is based on stereotypes that have actually inhibited our understanding of him until now, so let’s reject those. Better to presume his competence, provide his tools, and then get out of his way while he shows us who he is.
Come to think of it, that’s pretty much what all parents and teachers should do for their kids, autism or not. Imagine that.