Maya’s story: Everyone deserves a voice

Little girl in little chair with standard poodle beside her

Maya and Parker (Courtesy Dana Nieder)

Imagine that you’ve just turned four. (If you really did, you can skip this part.) Your name is Maya. And you are, to quote your mother, wiggly and giggly. You’ve got a mischievous streak, and a perfect partner in crime: Parker, your standard poodle.

Now. Imagine that you can’t speak. You can say “done.” And, sometimes, “bye” and “mama” and “dada.” But the muscles that control your speech production are just too weak and disorganized to get you any further.

You’re smart and funny and opinionated. There are lots of things you want. Things you think about. You have jokes to tell, questions to ask.

You use sign language some, but the same poor muscle tone that keeps you from speaking makes it hard to figure out your signs. So you point, and use different tones of voice in your sounds. And your parents work hard to guess what you’re saying.

But still, it’s so very lonely. Sometimes you get

So.

Very.

Frustrated.

All you can do is cry.

And cry.

Your parents work very hard to help you communicate. Sign language. Picture cards. Labels. Boardmaker. A word book. (That one you sleep with, you love it so much.) They research augmentative and alternative communication (AAC) devices, and try them. But the AAC devices are big and heavy and complicated.

And you’re four.

And tiny.

And you can’t make them work.

Then a couple of speech therapists come out with an iPad app called Speak for Yourself. Your mom, of course, gets it to try.

And here’s what happened last January, just two days after you got your new “talker”:

By June, here’s what your mom is saying:

Maya’s progress in using the app to communicate has been staggering. In my original post I imagined a future in which I could hear Maya “speak” in phrases and share her thoughts . . . . Now, only weeks later, we are living that future.  She politely makes requests, tapping out “I want cookie please.” She makes jokes, like looking out the window at the bright sunshine and tapping “today rain” and laughing (what can I say, 4 year olds don’t tell the best jokes).  And two days ago she looked at my husband as he walked by and tapped “Daddy, I love you.”

Life-changing.  Seriously.

Maya can speak to us, clearly, for the first time in her life. We are hanging on her every word. We’ve learned that she loves talking about the days of the week, is weirdly interested in the weather, and likes to pretend that her toy princesses are driving the bus to school (sometimes) and to work (other times).  This app has not only allowed her to communicate her needs, but her thoughts as well.  It’s given us the gift of getting to know our child on a totally different level.  I’ve been so busy embracing this new reality and celebrating that I kind of forgot that there was an ongoing lawsuit.

Oh, yeah. The Lawsuit.

♦ ♦ ♦

The big guns in the AAC industry are trying to kill Speak for Yourself. Semantic Compaction Systems, Inc. (SCS) and Prentke Romich Company (PRC) allege that the two speech therapists, Heidi LoStracco and Renee Collender, infringed on their patented keyboard technology.

And maybe they did. I don’t know.

But what’s striking is the money involved.

Speech-impaired customers have been asking PRC for an iPad app for quite some time, according to Dana Nieder, Maya’s mom. But they haven’t seemed interested.

And why would they be? The AACs they sell run about $7,500. Extended warranties on the high-maintenance devices run another $684 to $888 a year.

Speak for Yourself costs 300 bucks.

Why create a $300 app if you can keep a monopoly and sell devices that run eight to nine grand instead?

Last week, before the case has even been heard, SCS and PRC convinced Apple to remove Speak for Yourself from the iTunes store. Now the Speak for Yourself folks can’t update or repair the app for current customers. And the next iPad update from Apple may well render the app useless.

Leaving Maya unable to speak.

Again.

Maybe LoStracco and Collender did steal ideas from Semantic and PRC. I have no idea. If so, they should’t be marketing Speak for Yourself, and Semantic and PRC should win this suit.

But if that happens, Semantic and PRC should come out with an iPad app. Pronto. After all, as the Prentke Romich motto makes clear:

Everyone deserves a voice.

And that includes Maya.

Maya hugging her iPad and grinning at the camera

Maya proudly displaying her “talker” (Courtesy Dana Nieder)

If you would like to use your voice on Maya’s behalf, you can ask Prentke Romich (info@prentrom.com) to make their own iPad app available–or you can ask Apple (appstorenotices@apple.com) not to take Speak for Yourself off the market in the absence of any court order to do so.

Share

5 thoughts on “Maya’s story: Everyone deserves a voice

  1. Just wanted to add that there is now a petition at Change.org titled Let Maya Speak for Herself

  2. Pingback: Daily Kos: Apple, Software Patents, AAC Systems, and the Silencing … | thesoftwaresite.info

  3. Heidi and Renee should apologize to PRC and SCS. In the face of strong competition, (Did you forget DynaVox had several rounds of $10 mil, and this last IPO they were valued at $150 mil, and PRC’s language system has endured (it works!), the heart of their company, their training educators who travel day in and day out to help people — through all of marketing of the Proloquo2go $200 or $300 app with an international audience, the high end devices survived and thrived. Through the school districts and insurance companies cutting costs, the Unity survived. Through years of various research grants trying to show that PRC systems don’t work, PRC has grown. PRC tries to treat it’s employees with respect. It’s employees, I’m sure, are holding their tongues — what they’d really like to say… about this issue. Did you ever think the SLP’s are stealing from everything each and every PRC employee works for? Many of them have worked there for 20 years, or more! Yes, PRC employees have feels, and I know if they could help Maya learn “the system,” house calls would be made. I’ve seen them do it.

Comments are closed.