One of the most common questions I get about Cheeks is “does he understand____?”, and the answer is that I don’t know for sure. In theory he can talk and explain for himself, but in practice, speech is so difficult for him that he has learned to not depend on being understood. Therefore he often remains quiet when people interact with him. But we live in a highly verbal world, especially within the education system. As such, the measurement tools that are used to identify learning are flawed. Of course, that happens with neurotypical kids, too. So… what does he understand?
I attended an educational session this summer in which a newly minted Ph.D. presented the dissertation paper that earned her the degree. Part of her research depended on demonstrating to neurotypical kids how a child can be a competent learner and yet still be unable to comply with the way a test is presented. To do this, she administered an Australian intelligence test to her American students. (I have no idea if this test is authentic, but it demonstrates the point.)
Why couldn’t they pass the test? It was presented in their native language and they were given whatever accommodations they needed in order to complete it. Because it was created with a particular audience in mind, and they were not that target audience. The same is true of tests created for a verbally-based educational system when given to non-verbal or semi-verbal students.
When Cheeks’ had his most recent intelligence testing done, he tested as having an IQ of around 70. That score is two standard deviations from the mean, which in layperson’s terms used to mean labels like moron, feeble-minded, or retarded. I am not making this up. The standard disclaimer language that I was presented when told of Cheeks’ score included the warning that his score was unlikely to change much in his lifetime. So that was fun.
But I do not believe it. I know there is a whole world locked in there, waiting to be released. I believe in his abilities not just because I’m his mother, but because I see evidence of it every single day. Have you ever had that dream where you are calling to someone who should be able to hear you, but for whatever reason they can’t? I think that is likely the world Cheeks lives within.
Every day, we are chasing down ways to allow him to be heard. Until then I will speak to him as the 9 year old he is, and presume until proven otherwise that he has the ability to understand. There is nothing wrong with his hearing, and I would be crushed to learn later in his life that he didn’t know why we were always talking down to him.
I understand why people talk to Cheeks as if he is a much younger child. And I appreciate their desire to connect with him. But please, don’t interpret his lack of appropriate responses to mean a corresponding lack of understanding.