Thursday, June 21st, 2012
The day my son first spoke to me using a speech app on his iPad was game-changing for him and for me. It was two years ago this month, when he was seven. Max isn’t able to clearly articulate words, and his speech teacher at school had introduced him to the iPad and Proloquo2Go speech app. Suddenly, for the first time in his life, Max was able to express what was going on in his head—and I was able to hear it. He wanted to talk about his best friend. “Max Caleb” he had the app say for him.
It was one of the most beautiful sounds I’ve ever heard.
As the months passed, Max grew increasingly comfortable, adept and speedy with the app. He used it to tell friends and family about everything from his favorite color (purple) to his favorite food (spaghetti). At school, he let classmates what he’d done on his weekends; when we returned from trips, he used his app to talk about them.
Max has done so well with the app that the Proloquo2Go company recently featured him in a video. I can’t imagine his life without it.
Right now, as I write this, another mom is facing the fact that her little girl may lose the speech app that’s given her a voice. Parents Best Blog Award winner Dana Nieder is mom to Maya, a four-year-old who is developmentally delayed and unable to articulate words. Maya uses the app called Speak For Yourself (SfY). It’s changed her world. As Dana writes, “She politely makes requests, tapping out ‘I want cookie please.’ She makes jokes…. And two days ago, she looked at my husband as he walked by and tapped ‘Daddy, I love you.’”
Earlier this month, Dana told her readers that iTunes had removed SfY. As she summarized it for me, “The app is at the center of a (slow moving) patent lawsuit. A company that makes dedicated devices, PRC, is suing the makers of the app. In and of itself, that’s not a huge deal—business problems, business lawsuits, etc. Here’s the problem: PRC went to Apple and had the app removed from the iTunes store. We still have the app, but when Apple updates it’s operating system in the fall (to iOS6 or whatever they’re calling it) it’s possible that SFY will no longer work. Typically, app developers preview the new operating system and then roll out repairs/updates to their users, but now that SFY is removed from the iTunes store, that’s not possible.”
In other words, Maya may very well no longer have a voice come fall.
Dana’s position is that the SfY should be restored to the app store, and remain there, and she’s started a petition at change.org that I signed. Many around the Web have raised their voices in protest and outrage, from parents to diehard techies.
Maya’s case raises real concerns about the future of communication apps. As more enter the market, the potential for patent infringement will increase; perhaps there will be more cases of this happening, more risks of children and adults losing their means of speaking to the world. As Dana says, “What some people don’t understand the investment that goes into using an app. Many are like ‘So? Just switch to a different app.’”
But if you’re the parent of a special needs child, you know that’s not realistic. Teaching Max to learn to use his app took months and months of effort—by his teachers, therapists, and me and my husband. It was like learning a new language. Taking Max’s app away from him and asking him to start with another would be the equivalent of telling your very chatty toddler that as of tomorrow, he is no longer allowed to speak English and you will be teaching him Swahili. For some kids with special needs who take longer to learn and process information, it would be like trying to learn Swahili spoken backward.
I’m heartbroken, both for Maya and because one of my favorite companies in the world, Apple, has done this. I’m no expert in patent law, but Apple is a veritable Goliath; couldn’t the company demand the Speak for Yourself app remain online until the litigation is worked out?
Come on, Apple: Flex your muscles. Make it clear to other companies who create communication apps and devices that it is not OK to suddenly yank them away.
Let Maya keep her voice.
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Tags: health, Heath, iPads for kids with special needs, Speak For Yourself, Special needs | Categories: Autism, Cerebral Palsy, Children With Special Needs, Disability, Down Syndrome, Must Read, SPD, Special Needs, Special Needs Parenting, To The Max