I listened to a fascinating parent panel hosted at the Bloorview Research Symposium Tuesday. It was called Assistive Technology at the Dawn of the 21st Century: Juxtaposition of Hype, Reality and Hope. It was noted that 25,000 children in Ontario lack technology that would allow them to communicate or access a computer.
Holland Bloorview biomedical engineer Tom Chau (above left) moderated a discussion between four parents whose children have tried various communication technologies. The session was facilitated by students and staff in Tom’s Prism Lab. A focus of Tom’s lab is called ‘body talk’ research. This involves developing systems to detect physiologic signals – changes in brain waves, breathing patterns or heart rate – and translate them into electronic communication for kids who are non-verbal and immobile.
I wanted to share some of the parent comments with you.
What do you think about the hype around technology?
Karen Castelane: When I think about hype I think of the positives. It grabs the attention of the general public, stops them in their tracks and makes them take note. It motivates scientists to work in this field, and donors to donate, and gives hope to parents and therapists. It shows that this population has value and endorses the notion that communication is a right for all. When I think of negatives, hype can backfire when we don’t have quick results and the technology doesn’t live up to expectations.
Donna Cappelli: When my son Julian was younger people would say: “Isn’t there all this great technology? In five years you’ll hook up something to his brain and he can do anything.” But part of me has to accept how Julian is. If things don’t happen quickly, Julian gets frustrated. As parents, we have to take pause. I used to want to jump on everything but now I want to assess it.
How realistic is media coverage about assistive technology?
Donna Cappelli: I think media coverage is important. Everything comes down to money. Some of these technologies are being marketed for gaming because gaming makes money. If the media can show that the technology can be used in these other ways, it’s good.
Christopher Hopper: It’s helping you (scientists) stay motivated and engaged and pushing each other, whether it’s coverage in the popular press or scientific journals…Early on I thought maybe this technology will solve my son’s problems. Over time I learned that maybe there isn’t anything to solve. There aren’t any silver bullets out there, no magic wands. But there are different things that we can bring to bear. Through a tablet computer with a communication software, our son has gone from a rudimentary ability to communicate in sign to saying “I want juice or water” to…surfing on his iPad on YouTube.
Karen Castelane: My son Max is a normal boy trapped within a body. There is no existing technology to facilitate his communication. He can’t reliably and consistently get his body to move to hit a switch. He has basic yes and no responses. He can’t make his thoughts and needs and wants known. People who work with him need to have absolute patience. I think a learned helplessness sets in because we have to interpret for him. When we heard there was technology here that didn’t rely on physical movement…that hope bulb went off and we were totally committed. But four to five years in, we aren’t any further ahead than when we started. It’s frustrating. Our expectations are diminishing that Max will have access in his lifetime.
Donna Cappelli: Julian is able to communicate verbally, but his teachers and others who don’t know him can’t understand him. We had high expectations for technology but one of the difficulties we’ve had is to find something consistent for Julian. And on the other hand, when we do find something, Julian may reject it even though it’s appropriate. For example, he has single-switch access through a throat sensor that allows him to turn the pages of an online book. But the books from the library that he wants to read aren’t available online. So he has the access but nothing to use it with. So everything else has to catch up with this technology.
What are your dreams for your child?
Marcy White: To find out what Jacob’s dreams are. He’s trying to tell us something. If I had to choose one thing – he doesn’t walk and can’t hold his head up and is tube-fed. But if had to choose one thing, I’d say it would be to be able to communicate. We recently began using an iPod and I’m able to see in a very short period of time very appropriate use by him. I want to find a way to open him up because I know he has a lot to say.
Christopher Hopper: My dream is that he will grow up to be happy and fulfilled. Through assistive technology, Ben’s life has changed from black to white. I have the same dream for all children who are locked in a box. Being able to express choice, preference, love – it’s universal and it is a right.
Photo by William Suarez