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A Professor Becomes the Student: An Education in Life and Autism

Caring Conversation — Tova Cooper

Tova Cooper studied at UC Berkeley, Columbia University, and UC Irvine. Now, in her second collegiate teaching position, Tova is a professor in the Department of Humanities at San José State University. An educator through and through, Tova’s teaching abilities took on new meaning when her first son, Leo, was diagnosed with autism. Truly a student of the world, she is the quintessential example of one who both teaches and learns.

Rajiv: What is your caregiving experience, right now and in the past?

Tova: Leo, my oldest son, was six when he was diagnosed with Autism. He was living in New York at the time with my husband Stan, who was in law school there. I had a position at the University of Florida, but my boss was really flexible, and so I was able to spend a lot of time in New York, doing research there and spending time with Leo and Stan. I was also pregnant with my second son, August, at the time.

While I was in New York, I brought Leo to occupational therapy, social skills classes, and behavioral therapy. He was six at the time. In a way, getting the diagnosis was good because it meant understanding him better—knowing what he needed and what kind of help was in order. My caregiving regime changed a lot then. Leo was in various kinds of therapies almost every day of the week. We had people in our home constantly, therapists observing for hours on end. It was hard, but helpful to have advice and parenting strategies to implement that would help us and Leo.

And then I had August. At 8 months, he started having severe allergies and was hospitalized a couple times. I was doing a lot of care-taking. Working, taking care of my kids, and learning about Leo’s ever-evolving needs: It was really challenging.

What does the boys’ day-to-day look like these days, as far as your caregiving is concerned?

Leo hasn’t quite gotten to the point of learning all the kinds of independent self care he has to do. So I need to make sure that he does it. Sometimes it’s a struggle. An argument. But he’s 12, and I need to make sure that’s he’s clean, or that he doesn’t smell. All the normal things you do with any almost-teenager. I have to make sure that he’s eating right. Both Leo and August have had pretty severe digestive issues, so I ensure both are eating the right foods to keep their digestion on track. Leo is also at the stage where he likes to be in his room; he listens to a lot of podcasts, has some video channels he likes, plays games online. My caring for him has minimized in a lot of ways. I’m not doing as much hands on stuff.

For August, I’m doing the same kind of things I used to do for Leo, but I also have to get him reading tutors for dyslexia. And he goes to occupational therapy for various other issues he has. I do a lot of things like finding specialists, and making appointments. I do paperwork. Stan does a lot of the driving, which is something I’ll never take for granted. The time given for that type of thing is huge.

It can be difficult to find the perfect balance between necessary assistance and learned independence for someone with autism. We were homeschooling Leo for a while, but it wasn’t working. We ended up getting him into the local public middle school, but that was a disaster. He was having extreme depression and anxiety. So then we found another school … an “inclusion school”. That was a disaster, too. They couldn’t handle him and they didn’t want him back. Then, out of seemingly nowhere, we found this charter school—Summit Denali. It’s full of great staff and a few people in particular who seem to really understand Leo and take the time to help him handle these ‘flare ups.’ They’ve been unbelievable, truly making Leo feel like they’re on his side. They focus on individualized learning and put a huge emphasis on really getting to know each student. It makes a world of difference.

What is your professional background? Your field of expertise?

I got my PhD in English and Comparative Literature with a specialty in American Literature from the late 19th and early 20th centuries. A few years after I graduated, I got a job in Florida at the University of South Florida in the English department. But I knew I had to leave the state for a few reasons, the biggest being Leo. People in Tampa did not understand neurodiversity, and we were very isolated.

Now I’m at San José State University, part of a team of four professors teaching a humanities honors program. I’m teaching history, art history, political science, literature, and philosophy at San José. This is my fourth year. I’ve had to acquire an immense amount of information. It’s kind of like being back in grad school, except with two kids.

How have your professional skills and perspectives influenced or impacted your caregiving efforts?

When Leo was diagnosed with autism, I immediately started researching. Which makes sense, because at my core, that’s what I am: a researcher. So the first thing I did was read all these memoirs about people with autism, or about people whose kids had autism, or whatever the connection may be. Then, I started researching the brain … what happens to it when one has autism, what are the theories surrounding that evidence … all of that. This acquired knowledge is due in great part to my profession, for sure. Your question makes me think that when I’m teaching my students—a lot of them are preparing to be teachers themselves—in a way, I’m teaching them directly about my findings. And of course, and all this has helped me with my own kids.

I just started reading a new collection specifically about reading disorders. August was just diagnosed with dyslexia, and so it’s been an interesting merge of the Mind/Brain/Education movement I’ve gotten into lately. I’m researching things that are helpful to my personal life, but also very important for my students to learn about. It’s insight for everyone.

How have your caregiving experiences impacted your professional efforts?

My first job after getting my PhD was working for a professor who had just started a program called Humanities Out There. We created curricula for underserved school districts. Ever since then I’ve been interested in improving our public and private education systems, mostly the former. I’d been so disappointed with the way that schools deal with autism in the classroom, particularly because there’s a lot of bullying. I think that one source of the bullying is due to the lack of education around neurodiversity. The kids don’t deal well with it because they don’t understand it. So I wanted to I wanted to bring that particular message to teachers. If we don’t educate our teachers on the way that kids with autism, for instance, are different, they’re never going to learn to be empathetic, to treat them like they would any other kid.

What one piece of advice would you give someone who found themselves in similar caregiving situations?

It’s funny, telling you all of this reminds me of how high my standards were at one point. A long time ago, I would have never even thought about getting into a bath unless it was scrubbed clean, totally rinsed, all of that. My standards have changed. You offer me a bath and some solitude, I’m in. No scrubbing necessary. Having a kid, even a kid who isn’t autistic, makes life complicated. Sometimes you just have to learn to say ‘ok’, and let your standards down.

Aside from letting our guards down on those little things, my husband and I have both really taken to having some hobbies. One thing that’s really helped me stay sane is pottery. I really try not to let anything interfere the time I set aside for it; I turn my phone off. It’s my time. I don’t want to talk to anyone when I’m there about my kids, or my work, or anything outside of that moment, really. I’m there and present. It may sound quite simple, but it’s supposed to be. Find a hobby that makes you happy. It’ll feel like therapy. And then just be sure that you always make time for it.

Interviewed: 5 September 2018, by Rajiv Mehta; edited by Julia Rubano

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