Tuesday, January 8, 2013

Happy Anniversary (one year with AAC)

A year ago today I downloaded Speak for Yourself onto Maya’s iPad.

And everything changed.

After over a year of searching for a communication solution, meetings with representatives from Dynavox and Prentke Romich, a failed attempt at using Proloquo2Go, a lot of PECs work, the creation and utilization of the Word Book, and a miserable assistive tech evaluation from the DOE (thanks for nothing guys, seriously) . . . I had nearly given up.  We were fresh off of a failed trial with a Dynavox device and I had begun emailing the creators of several big name apps, asking a ton of questions and re-evaluating whether maybe one of them would fit.  I was feeling kind of low . . . here I was, starting the search again.  A Facebook message from an SLP friend pointed me towards SFY, which was brand new to the market.  As I’ve gotten many such tips, I didn’t pay it much mind and only had one eye on the computer as I watched the SFY demo video . . . but it didn’t take long for it to have my full attention.  I watched it again.  Then I called Dave over to the computer and said “Ok, you have to see this. I think this is it.” 

And it was.

A year ago today, I downloaded SFY and played with it for a few minutes before Maya demanded to see it---and I told Dave to grab the videocamera so we could record what her initial reaction was. It was good. She liked it as much as we did. To be fair, she liked any communication system that we introduced (well, besides the Dynavox device---too many pop-ups and moving words---she gave up on that one quickly). She liked Proloquo2Go when it let her talk (but I had to customize it to not hold much vocabulary---too many folders to keep track of), she liked the Word Book when it helped her get more detailed thoughts out (but it had no voice). Speak for Yourself had both.  It had the potential to have a massive vocabulary (which she understood---she would tap the Babble button, all of the words would light up, and she would squeak with excitement) and it had a literal voice.  She could tap “milk” and hear a loud, clear voice say “milk” . . . for a kid who only gets to hear her voice in her head, hearing her thoughts spoken aloud must be pretty exciting.  At least that’s my guess, based on the way that her little face would light up (and sometimes still does).

And so, she had a voice.

Well, mostly.

It’s not that simple, of course---here’s the app, it talks for you, good luck learning the vocabulary and grammar.  We’ve done a year’s worth of work, and grammar (as in subject-verb sentences, multi-word combinations, etc) is just emerging. But the power of words---even just single words---is amazing.  Truly. 

Imagine if you could say nothing. (That was Maya 2ish years ago)

Now, imagine if you could say things with a communication board/book, but were limited to the words on hand. So, you could say “chicken nugget” if you were hungry, because it was in the book.  But if you saw a picture of a shark on tv and you wanted to talk about the shark, you couldn’t, because “shark” wasn’t in the book. (That was Maya a year and a day ago.)

Now, imagine if you could say anything, just using single words instead of sentences.  (That’s Maya now. Well, mostly. She doesn’t have every word, but she learns where new words are every day.)

Maya can tell me what she wants to do (paint, read, dance) or what she wants to play with (book, bus, princess) or where she wants to go (school, dog park, diner).  She can randomly say something that seems out of place (the name of a school friend, ferris wheel, thunderstorm) and suddenly I know what’s on her mind, at least in a general way.  She can translate her own speech---when she’s making a sound pointedly at me and I can say “I don’t understand, can you tell me with your talker?” and most of the time, she can.    She can make jokes . . . and she’s quite the clown.  After accidentally hitting “fuzzy navel” at breakfast one morning she saw that it cracked me up, and it’s been a favorite button ever since.

Without SFY, I wouldn’t know Maya.  “AAC let me know who my child really is” is a common refrain among parents (and siblings, and grandparents) of AAC users, and for good reason.  I had no idea that she understood concepts (like weather) or wanted to make jokes (like fuzzy navel) or was starting to spell (M-A-Y-A).  And there would be absolutely no way for me to know these things without an app.

No, scratch that.  Not “without an app  . . . without Speak for Yourself.  AAC is not a one-size-fits-all industry, and we tried several not-quite-perfect things before finding SFY.  It has been our perfect fit.
So here we are, a year later.  And in case you haven’t been paying attention, it hasn’t been an easy year.  

When the news of the lawsuit broke, I panicked.  When the app was removed from the iTunes store, I re-panicked.  When the app was removed from the android marketplace, I panicked again.  I had no idea what we would do if this app, which had become Maya's voice, disappeared.  I loved SFY, and as I got to know the creators of the app I really liked them, too . . . but I couldn’t help but worry. When faced with a lawsuit not only designed to dismantle their business, but also aimed at them personally, it seemed that the most logical solution would be to quietly concede.  Yet Heidi & Renee (the co-creators of SFY) shouldered the stress and expense and frequently made it clear that this wasn’t about money, it was about protecting the voice of the app’s current and future users.  They fought the good fight for the right reasons . . . and a year later, the app is back in the iTunes store and the android store and we don’t have to worry about losing it, ever.  I normally don’t get personal while discussing Speak for Yourself, but I would be remiss in not mentioning them this time. If SFY had been created by different people than this anniversary might not have existed, because the app very well could have disappeared back in March.   Heidi and Renee, I am forever grateful not only for the intelligence, creativity, knowledge, and planning that went into creating such a well-designed communication app . . . but also for the strength and conviction that it took to fight for it, and for us.  Thank you both.

Happy anniversary, Maya.  A year and a day ago, we knew that you had so much to say.  Today you can speak for yourself, in a simple but increasingly clear and clever way.  Here’s to an ever-more-wordy future.  I can’t wait to hear all of the (ridiculous, sweet, sassy, funny, clever, naughty, silly, sneaky) things that you have to say.  


icansaymama said...

Awwww! Happy Anniversary on this really important date!! Without you and your blog I would not have known anything about AAC!

Our journey into the AAC worlds starts in two weeks when Sunny finally gets his first talker and I am so excited and I cannot wait!!

Carole said...

Happy AAC Anniversary from your friends at PrAACtical AAC!! Thanks for all you've done to spread the word about what these tools and strategies can do for kids.

brocks*mom said...

Happy Anniversary! I think what stood out to me most was you saying you had some evaluation and Maya scored low on receptive language (I think?) and then every post since about the talker shows just how much she understands, and how smart she is! Way to go, Maya! Way to go, Mom for finding the right thing for your daughter and working so hard on her behalf. You are an inspiration. Truly!

grandma said...

a wonderful post about a wonderful anniversary to celebrate!! we are beyond thrilled at how far maya has come and how much work and dedication you put in to making it happen. imagine if that evaluation had made you re-think maya's capabilities and you hadn't persevered and pushed for so much more---what maya needed and deserved!!! and god bless heidi and renee and wish them only the best!

L said...

Happy anniversary to your whole family. I'm glad for all Maya has gained this year!

Lauren Enders said...

Wonderful post! Thank you for taking the time to share your story regarding Maya's journey to effective communication. Stories like hers keep me going in my work as an AAC Consultant!!

Lauren S. Enders, MA, CCC-SLP

Mary-Louise Bertram said...

Happy Anniversary to you all! It has been a priveledge to have learned from you and Maya over the past year. Thank you for your honesty and insight. I think your post addresses most of the Myths of AAC (http://depts.washington.edu/isei/iyc/romski_18_3.pdf) in a way that hopefully will get more speech pathologists and early interventionists understanding the importance of using AAC with a vast vocabulary with young children. I'm thrilled for you all. And I love knowing that Fuzzy Navel was programmed in by Heidi and Renee at some point, maybe on a hot summer's night?! I lift my Fuzzy Navel to you and say Cheers to a wonderful Mama and a gorgeous, chatty, funny, and blessed Maya.
From Mary-Louise

Kerri said...

Happy Anniversary Maya :)

Vanessa Blaylock said...

Hi Maya and Family! I just read about your AAC / SFY odyssey on Jonathan Zittrain's blog, and have now been pouring over the various posts here.

So it seems the good news for you Maya is that the settlement means SFY is here to stay / yours to keep.

I'm not a lawyer and I don't mean to drag you any further into that world than you've already had to be, but the aggressive intellectual property world we live in is such a frustrating place. Patent trolls are essentially running white collar protection rackets where they extort fees from inventors because they've previously patented every imaginable thing on earth. (although in your case I guess fees were the second choice after they weren't able to destroy the innovation)

Suffice to say this landscape upsets me, but it's wonderful at least to know, that things have worked out for you Maya. And while the sealed terms of the settlement don't say much, perhaps the filings by you and the others helped force the settlement.

Anyway, I'm inspired by your life, your efforts, your family, and all the wonderful content on this blog.

Keep up the good work and have a great 2013!