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 But he is not provided with it the way that yours is — based purely on an outdated, pejorative assumption that he doesn’t have the competence.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 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.