“I Love You Daddy”
Words every parent longs to hear, and most parents will as soon as their kids learn to talk. Maya’s dad heard those very words recently. What makes that so remarkable is that Maya is non-verbal; like my son Aidan, she doesn’t speak. Maya uses a speech app on her iPad called Speak for Yourself (SFY). Soon, though, she may lose her voice altogether.
When the iPad came out, we all saw the youtube videos of kids who had found a voice. My (Mac addicted) family quickly contacted me to say, “We want to get one of those for Aidan.” I immediately gave a resounding NO. If Aidan were to use a device to speak, it needed to be right for him. What motor skills would be needed to operate the device? How is the language organized? What span of learning does the device cover -will it grow with him? All of these questions could only be answered with a team of special educators who know Aidan, an AAC specialist who’s an expert in speech devices, and us, his parents. After researching and trying several devices, we decided the iPad was best. We use a different speech app then Maya called Proloquo2go (P2G).
Before the iPad, there were already voice output devices available to people. Prentky Romich Company (PRC) is one such company that makes a variety of AAC devices. Creative competition and variety is good for our kids as they all have such different and specific needs. PRC is an speech device that operates on its own hardware while SFY operates on an iPad. The bad news is that PRC has filed a suit against SFY. It’s hard to say that it’s about anything other than beating out the competition. That suit is still in court. (I’ve actually read this document and it’s easy to understand, very interesting, and quite enraging).
This is where Apple blows it. Instead of waiting for a verdict, Apple has taken down the SFY speech app. It seems hard to believe that APPLE, of all great companies, could be pressured into taking down a money making app (nothing in disability world comes cheap). It seems even harder to believe that PRC, a company who has devoted itself to giving people a voice, has worked closely with families, has witnessed the miraculous moment where kids discover words, could do this in the first place.
I’m clearly not a lawyer nor a business woman. Here’s what I do know; the cost of this lawsuit is too high.
Maya has gone from making simple one word choices to indicate what she wants for breakfast, to short phrases to ask her mom to read to her again, to spontaneously telling her Daddy she loves him. She has the cognitive ability to learn these things, the fine motor skills to use SFY, and now she could be silenced…just when she’s finding her voice.
The cost is too high.
Aidan uses P2G primarily to make choices such as what he wants to play with, what he’d like to drink, and if he’d like to walk or drive to his destination. His fine motor skills are a challenge and he has a very long processing time. These choices don’t come easy, but for now, he has a choice. Will he be silenced next?
We all need SFY to stay on the market and we need PRC to remain a successful company as well. We need as many companies as possible to offer a variety of choices to give voice to the truly voiceless. Maya’s Daddy deserves to continue to hear “I love you.” Aidan deserves to request chocolate milk for dinner.
And who is left to speak for our children, to stand against business as usual? As always, it’s us, the parents of kids with disabilities, we the exhausted often discouraged parents.
Will you stand with us?
You can share this post.
You can share Maya’s mom’s post (Please read this as it is clearly written, has a ton more information, and will make you weep with frustration)
You can contact Apple at firstname.lastname@example.org or here at the itunes store.*
You can contact PRC on their FaceBook page or at email@example.com
Not sure what to say?
Here’s what I said to Apple: As a parent of a child with a disability, I respectfully request that you allow SFY and PRC to have their day in court. Please continue to make the SFY app available as it has truly changed the lives of those who use it. Thank-you for this opportunity to lend my voice in dissent. (Feel free to attach my or Maya’s mom’s post).
To PRC I said: I respectfully request that you adhere to your mission statement and allow each individual to use the speech device that works best for them. Please drop your suit against SFY.
To my family and friends who are Mac lovers, consider this a special challenge to use your voice for Aidan.
Thank-you for not being silent.
*post amended with additional contact info provided by Aidan’s MacLoving Pop.
*As on 6/18 More than 2500 people have signed the change.org petition here to get Apple to put SFY back on iTunes until this dispute is settled in court. You can be the next to sign.
*Update – Read PRCs response here.
*and the Time.com article here.
*The Huffington Post article is here
*Maya’s mom Dana wrote a round-up article on 6/18 of all the places she’s found that have picked up on this story. Check it out here.