I recently had the pleasure of talking with wonderful parents of a boy who was considered to be nonverbal until he got his hands on a letterboard — a way to communicate that didn’t require fine motor skills. It turns out that he processes auditory information quite well, is very bright, and is now on a path to prepare for a college education likely in physics. That letterboard was a game changer.
His story reminded me of Carly Fleischmann whose inner voice could finally be “heard” by typing. The part about Carly’s story that stuck with me was her dad reflecting on how they used to talk about Carly with Carly in the room, as if Carly was not able to understand. He later found out that she was comprehending everything, and the regret weighed heavy in his voice.
These stories are awe-inspiring, but what about the more mundane stories out there? There are so many other students who are being assessed by methods that are limited. The limited methods… limit our ability to truly “see” students for all that they are. This is more common than not. One of the problems with most school assessments is that they are limited to “paper and pencil”, or perhaps computerized, tests that required verbal-linguistic skills.
Why do we do this? It’s a cycle. Those who did well with verbal-linguistic skills, along with meeting other neurotypical expectations, are the ones who go on to become the test-makers and evaluators of the test results.
Now it is time to see beyond. The first step is gaining awareness through stories like Carly’s and studies such as the following:
~ Words Say Little About Cognitive Abilities in Autism by Nicholette Zeliadt, Spectrum News
~ Interaction Takes Two: Typical Adults Exhibit Mind-Blindness Towards Those With Autism Spectrum Disorder. Edey R, et al. J Abnorm Psychol. 2016
Note that second one isn’t about verbal so much as nonverbal, and the title caught several people by surprise when it was first posted. This reaction shows how pervasive our preconceived filters can be, including in how we frame our research.
To quote Douglas Adams, “See first, think later, then test. But always see first. Otherwise, you will only see what you were expecting.”
“But what am I?” Her eyes were glassy from unshed tears.
“You’re you. And you’re wonderful,” I tried to reassure her, but she saw the worry on my face.
My beautiful daughter: smart, compassionate, kind to all things living and not. Seriously, the kid bonded to pet rocks! And she never did fit in a box.
“There just isn’t a label for you yet,” I said as the letters of the current acronym went through my mind. None of those letters fit.
But she wanted a label. As much as she didn’t fit into boxes, she always wanted them. She would even ask me to create them for her. “Just tell me what to do,” she would say, even as a teenager. I, however, was the worst parent for that request.
“I’ll help you find your way,” I would usually say. But this time I felt lost on how to do that. She was hurting, and I didn’t know how to help.
“I love you. We all love you.”
The words felt weak. Insufficient. How well would that love armor her against a world full of hate?
That was seven years ago, and my daughter travels the country, living life, lighting up the world the best she can. There’s still no perfect checkbox for her, but she has found a sense of belonging in other ways, and she makes the world a better place.
As I listened to Anderson Cooper recently read each name of those who died in Orlando, my fingernails cut into my clenched hands as I tried to stay as resolved as he was. With each name, I thought, that could have been my child. I will hear these names. Then I saw the text message of one child to his mother. I had no words. Only emotions in a sea of synesthesia.
My heart turned to CMASAS students. So many of our students are targeted – for their culture, or religion, or neurotype, or sexuality, or other reasons. Each one is precious. We open our arms to them and their families, and do what is within our power to help them find their way. And love them. Always love them.
But I find myself wondering what more we could do.
“When I was a boy and I would see scary things in the news, my mother would say to me, ‘Look for the helpers. You will always find people who are helping.’ To this day, especially in times of ‘disaster,’ I remember my mother’s words and I am always comforted by realizing that there are still so many helpers – so many caring people in this world.” ~ Fred Rogers
On a panel about nonconformity, the conversation mentioned the need for people to not be cogs in the wheel. Of course I shared what we were doing at CMASAS to help with that.
Two fellow panelists were ready to remind me that schools like ours only worked for the privileged elite.
This is a common perception. Why? Because it is mostly true. Programs perceived to be similar to ours often fail to serve students outside of a particular set of demographics.
So how can I be so sure that our model can work outside of those demographics? Because it already has.
From students in rural communities of 1500, to cities of over 18 million, it has worked. For students who were homeless, or living in a meth house, or in a mansion, or on a boat for months at a time, it has worked. For students who had cancer, who were recovering from trauma, or who were healthy professional athletes with a demanding schedule, it has worked. For students who needed to move slowly through their studies, or those who needed to accelerate learning, it has worked.
The whole point of personalized education is to personalize for each individual student based on the current scenario of that student’s life in that moment. It requires providing levels of support with instructors, coaches, counselors, and other team members there to serve. It also requires tossing out the original rulebook most schools follow.
CMASAS is one version of the model — just one manifestation of the Personalized Education Philosophy. We serve a broad range of students, and the model could be used to serve even more (e.g. create a school in a language other than English).
Okay fine. It could be seen that we we’re different. But my fellow panelist Joyce accurately pointed out, “Yes, we have the positive things that people like you are doing, but that is not the majority trend as of yet in education.”
My response: “So my question is, how do we make it the majority?”
Of course, I couldn’t just leave it at that, especially since we have been actively encouraging partnerships this past year to bring what we do to serve more students. Learning centers, sports academies, and even public schools have integrated CMASAS into their programs. I am still waiting for somebody to create a performing arts academy with us.
I put out this call to the audience: “We’re looking for more Rangers,” I motioned to Joyce, “like you, who will come on board so we can actually make the changes in this country, and the rest of the world – I mean, because why not the rest of the world?”
And why not? As Christa McAuliffe said, “May your future be limited only by your dreams!”
Sometimes she misses the point.
Today I watch as Ching Shih picks out her favorite food from the mixture and scurries under the bed to her personal stash, storing and eating only the best food. Elsa has been watching this for weeks. Today Elsa decides to “help” Ching Shih by grabbing any bit of food – often the large, least favorite pieces – and adds them to Ching Shih’s stash. She then gets very excited because she did the thing! A ferret thing!
The result is that Ching Shih now has a mix similar to the original.
At first glance, Elsa is doing the same thing as Ching Shih. She just missed an important detail of the behavior, not to mention its whole purpose.
As you might expect, my education geek’s brain instantly draws the comparison to how many schools will try to copy what CMASAS is doing, even including several details. They just miss the important ones, and the whole purpose. The result is that their school is similar to the original that people are trying to get away from.
Drawing a direct comparison to the above ferret cuteness, we aim to offer the best. Since student needs are very personal, the “best” is also personal. It requires empowering students to have the strongest voice in their education. Nurturing personal agency, and ultimately self-actualization, is at the heart of what we do. It’s the whole purpose.
So next time you see a program that says it’s self-paced but then has due dates, or says it’s personalized but uses only canned curriculum, just remember they are confused ferrets. They often really think they are doing the thing! They just missed the point.