Monday, June 25, 2012

Getting back on our feet

We've had a lot going on over here.

Besides the obvious (The Silencing of Maya and the news stories generated by the silencing---which I'm updating every few days) we were also all sick with hand, foot & mouth virus (which was exactly as miserable as it sounds).  Two and a half weeks later, we're finally all back on our feet. 

Maya was feeling better last week and got to do some painting . . .

 . . . but some days she was still so tired that she needed an immediate nap (which is not her style).

She continues to make great progress with her talker, and so does Parker (yep, really).  First, here's Maya, showing off how she is starting to put sentences together:

Maya loves to call Parker, but she makes a tiny, breathy "Pa" sound to call him.  Sometimes he hears it, but most often not.  I made a button on the talker that says "Parker, come!" and I've been teaching him to come when he hears it.  Finally, it's working :)  Take a look:

If you haven't already, we would really appreciate it if you could take a minute to sign our petition to keep this app available for Maya and its other users.  As you can see, it's her voice.  We can't let it go.  (And we would be especially appreciative if you would share it---via email, to listservs, on Facebook, through Twitter, from a banner on a plane, written in fireworks, whatever.)  Thank you!


Friday, June 15, 2012

The Silencing: Links Round-Up

Here's a list of articles, discussions, etc. that have come my way since Monday, when I put up The Silencing of Maya.  It's difficult to find everything that's out there, since many of these articles are repeated on various news aggregator sites.  I'll try to keep this semi-up-to-date.

First, the link to our petition on asking that Speak for Yourself be returned to the App Store immediately and allowed to remain there throughout litigation and regardless of the lawsuit results. Business disputes should have business resolutions, and those who need this app to communicate should be assured that they will not lose it. (If you agree, please sign and share-thanks!)

*= article added on 6/18
**=article added on 6/21
***=article added on 6/30

Articles in the US
iPad App That Helpts a Little Girl Speak Pulled From App Store (from
Speak for Yourself, iPad App Giving Voiceless A Voice, Exits App Store (from
App Store enigma: the patent holder, the developer, and the voiceless child (from
App To Help A Three Year Old Girl Talk Pulled From App Store (from
Apple Steps Into Patent Fight To Unnecessarily Silence A Little Girl (from
Apple Pulls App That Gives Disabled Children The Chance To Speak (from
Taking More than Candy from a Baby (from
iPad app removal could leave family unable to communicate with daughter (from
Assistive Speech app for iOS casualty of patent wars? (from
Speech app pulled from App Store that gave 4 year old a voice for the first time (from
Parents, Storming the Gates (from
Dispute Erupts As iPad App For Nonverbal Is Pulled (from
*Apple, Software Patents, AAC Systems, and the Silencing of Maya (from
*Nurse Kelley Sez: ACTION! Please save an app for nonverbal kids! (from
*Bad Behavior And How it Threatens Internet Business (from
**Apple, You've Done Kids With Special Needs Wrong (from
**Petition to save speech app for disabled child nears 3,000 signatures (from
**Apple pulls language app in face of patent dispute (from
**Patent wars threaten iPad app that gives a little girl her voice (from
***Why Did Apple Pull An App Designed To Help Autistic Children Speak? (from
***Speak for Yourself app might make iPad comeback, report says (from
***The Latest in Apps: Speak for Yourself (from
***Special Needs Parents vs. . . . Patent Law? (from

Apple silences mute kids' speech app in patent blowup (from, UK)
Apple conspires to stop mute child from communicating (from, UK?)
'My daughter can't speak without it': Furious mother launches campaign after Apple pulls life-changing iPad speech app from store (from, UK)
Dutch article (from
French article (from
Portuguese article  (from
*Russian article (from
*Italian article (from
**Italian article (from
**Greek article (from
**Spanish article (from
***French article (from
***French article (from
***French article (from
***French article (from
***French article (from
***French article (from
***Dutch article (from
***French article (from
***Indian website (from
***Apple will only reinstate mute kids' app if makers win patent case (from

From the Blogosphere
A heartbreaking look at software patents  (from
I love you Daddy (from
Maya's story: Everyone deserves a voice (from
My daughter cannot speak without this app (from
*A little girl without a voice (from
*A silencing lawsuit (from
*A Day Without Lawyers (from
**Let Maya Speak for Herself (from
**Speak For Yourself Is A IPad App That Can Help Aphasia (from
**Assistive iPad App Pulled (from
**Prentke Romich Company vs. A Disabled 4 Year Old Girl (from
***The Fight to Keep a Voice (from

Online Discussions (more technical in nature)
Discussion on Slashdot (over 500 comments)
Discussion on Hacker News (over 300 comments)
Discussions on Reddit (multiple threads)

**A segment from ABC news in Alabama

Other Stuff
**Idyllic Software: This company changed their main website page in support of Maya

Wednesday, June 13, 2012

The Silencing: FAQs

Edited on 6/14 to add: There is now a petition up on asking that Speak for Yourself be returned to the App Store immediately and allowed to remain there throughout litigation and regardless of the lawsuit results. Business disputes should have business resolutions, and those who need this app to communicate should be assured that they will not lose it. If you agree, please sign and share. Thanks!

This will be brief, as we are all sick (literally, not figuratively).  As I mentioned on the blog's Facebook page today, "I just realized that due to a) the fast-breaking nature of this news story and b) the fact that Maya is home sick (day 3), she has the rare and distinct honor of being viral in 2 ways at once." 

First, thank you to those who have tweeted, retweeted, blogged, written about, shared, and posted my last blog piece to Facebook.  Special thanks to those who have reached out to PRC, Apple, and SfY.  We appreciate the support that you are showing to Maya and the other users of Speak for Yourself.

Second, there have been many kind suggestions of alternate programs and systems of communication that we could try to use with Maya.  It's important to know that the success of AAC is highly dependent on the user's ability to embrace the system-so while I'm about to explain why a few of them as "not feasible for us" that does not mean in any way that I feel that these are inferior systems.  They just didn't work for us.  First, Proloquo2Go was the first iPad app that we attempted to use with Maya, and while it was a good introduction for us into AAC, it proved to be not a lasting solution (primarily due to the organization of the vocabulary in folders, and also because the vocabulary symbol set was not as clear for her).  Next, we looked into Dynavox devices at the same time that we looked into PRC devices (November 2011).  Again, the devices are great for some people, but were not a good match for Maya (primarily due to the folder & tab system of organizing the vocabulary).  Finally, sign language.  ASL is a beautiful and meaningful language for many people, and Maya does know a number of signs that she uses with Dave & I.  However, due to some dexterity/fine motor issues, her signs are garbled . . . even someone who speaks fluent ASL would have to do a fair amount of guessing to figure out what she might be attempting to sign.  Additionally, I am a big fan of the way that AAC lets her speak to anyone (who understands English) anywhere, without a translator.  Other four year olds can understand the talker, but they likely would not understand her signs.  That's important to me.

Finally, I've gotten a good number of suggestions as to how to protect our copy of Speak for Yourself.  We've taken the following steps: I have backed up the original app file onto 2 hard drives.  We have two iPads that carry SfY-one is Maya's designated device and one has been used for other things but carries a back-up copy of the app.  Both iPads have had the wireless disabled and airplane mode turned on.  One has an AMDi protective case, the other has a Griffin protector, so hopefully they'll both be durable enough to last for a while. (When the primary user of your device is a four year old, durability is a real concern.)  I still have concerns about the fact that if the iOS is updated in a way that makes SfY incompatible with the new operating system, we will only be two broken iPads away from being left without Maya's communication app.  Additionally, we are left hoping that the app doesn't end up needing any repairs or updates, because we are now unable to receive them.  I am unsure as to whether there are any other steps that I could take at this point to protect what we have.

We feel very fortunate to have obtained Speak for Yourself prior to its removal from the iTunes store, and we are frustrated and saddened on the behalf of the other nonverbal children and adults who could be using this app to communicate with their friends and family but are now unable to download it and determine whether it would be a good solution for them.

One more thing, we appreciate the emails, tweets, and Facebook messages, truly.  At this time, I'm receiving a good number of incoming messages and cannot respond to them all quickly.  I'll do my best to get back to everyone, but I am sick, pregnant, and have a sick child.  It's going to take a little bit of time, so thanks in advance for understanding.

Tomorrow I'll try to put up a links round-up of the news articles, etc. that have gone up about the story.  Thanks again, everyone!

Monday, June 11, 2012

The Silencing of Maya

(Edited on 6/19/12 to add: A petition is now up on asking that Speak for Yourself be returned to the App Store immediately and allowed to remain there throughout litigation and regardless of the lawsuit results. Business disputes should have business resolutions, and those who need this app to communicate should be assured that they will not lose it. If you agree, please sign and share like crazy. Thanks!)

Eleven weeks ago I wrote about a lawsuit that posed a threat to my daughter’s voice.  Maya, who is four years old and unable to speak, uses an app called Speak for Yourself (SfY) to communicate, and the creators of SfY were being sued for patent infringement by Prentke Romich Company (PRC) and Semantic Compaction Systems (SCS), two much larger companies that make designated communication devices (not iPad apps).  You can read the original post here, and see the numerous news articles that were spurred by this case here.  Maya was poised to become a very real, very human, and very adorable casualty of patent law.

After that blog post, two big things happened. First, I learned a tiny bit about patent law, most notably that while in the worst case scenario (for us, a verdict again Speak for Yourself) the judge could shut down the app, it was also quite possible that PRC/SCS would only be awarded monetary damages.  I was able to relax a little and lose some of the terror that SfY (which Maya was already relying on) would be suddenly yanked away or disappear.  The second, and far more exciting development, is that 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.

Until last Monday.  When Speak for Yourself was removed from the iTunes store. 

It disappeared.  It no longer exists.


According to this court document, here’s how this happened: PRC/SCS contacted Apple and requested that Speak for Yourself be removed from the iTunes store, claiming that it infringes on their patents.  In turn, Apple contacted SfY and requested their response to these claims.  The lawyer for SfY responded, explaining to Apple exactly why the infringement claims are unfounded, referring Apple to the current open court case, and pointing out that PRC/SCS had not asked the court for an injunction ordering the app to be removed from the store.  For months, nothing happened . . . and then on June 4th Apple notified SfY that the app had been removed, due to the fact that the dispute with PRC/SCS had not been resolved.

So now what will happen to Maya’s voice?

At the moment, we still have the app, securely loaded into her iPad and present in my iTunes account, and Maya remains blissfully unaware that anything has changed.   Dave and I, however, know better.  We are now shadowed by a huge, impending threat.  With the removal of Speak for Yourself from the iTunes store, the SfY team has lost the ability to send out updates or repairs to the people who are currently using the app.  At this point, an update from Apple to the iPad's operating system (which gets updated semi-regularly) could render SfY useless (because if the new operating system was to be incompatible with the code for SfY, there would be no way for the team to reconfigure the app to make it compatible with the new OS and send out the updated version).  Our app could stop working, and Maya would be left unable to speak, and no one would be able to help us.

And there’s another threat, too, perhaps a more sinister one.  What would happen if PRC/SCS contacted Apple and asked them to remotely delete the copies of Speak for Yourself that were already purchased, citing that the app was (allegedly) illegally infringing upon their patents, and stating that they wanted it entirely removed from existence?  Prior to last week, I would have (naively) thought that such an aggressive move, harmful to hundreds of innocent nonverbal children, would have been unfathomable.  Now, it appears to be a real concern.  Prior to last week I would have (naively) thought that even if such a request was made, Apple would never comply without a court injunction forcing them to do so.  Now, it appears that they very well might.

The removal of Speak for Yourself from iTunes doesn’t seem fair.  It actually seems pretty exactly unfair.  And frankly, it’s beyond my understanding.  I’m not a legal person, and there are two legal-ish things about this turn of events that I simply do not understand.

First, I don’t understand why PRC/SCS would go to Apple to request the removal of the app from the app store.  There is already communication between PRC and SfY through the court.  Why wasn’t an injunction filed in the court to halt sales of the app?  That would have allowed for due process, and for the impartial judge to decide whether the removal was justified.

Second, I don’t understand why Apple decided to remove the app.  They received communication from a lawyer, explaining that the claims of infringement were invalid and that the court had not ordered the removal of the app from the iTunes store.  This app is not a game, it’s a necessary, irreplaceable voice for people with disabilities. Why would Apple decide to pull it so arbitrarily?

To get a little less impartial, I also don’t understand how Prentke Romich could think that this was a reasonable, or ethical, move to make.  PRC is a 46 year old company whose entire client population is comprised of children and adults who are unable to speak.   Their motto (prominently displayed atop their Facebook page) is “We Believe Everyone Deserves A Voice.”  How can they reconcile their mission statement with their strategic removal of Speak for Yourself from the market, effectively blocking access to new nonverbal users and potentially causing the removal of the app from the current users who are using it as their only voice?

My daughter cannot speak without this app.

She cannot ask us questions.  She cannot tell us that she’s tired, or that she wants yogurt for lunch. She cannot tell her daddy that she loves him.

No one should have the power to take this away from her. 

What would happen if we lost SfY? I have no idea. As I’ve explained before, we have tried other communication apps and didn’t find any that were a good match for Maya.  Interestingly, we also carefully considered purchasing a communication device from PRC, and met with one of their representatives in November, nine weeks before a post on my Facebook wall introduced me to SfY (and seven weeks before it even existed in the iTunes store).  We examined PRC’s devices and were disappointed to see that they weren’t a good fit for Maya.  For us, this wasn’t an issue of an expensive device versus a “cheap” app.  This was an issue of an ineffective device (for Maya) versus an app that she understood and embraced immediately.  The only app, the only system, that she immediately adopted as her own way of communicating.

This app is her only voice. 

The fact that my daughter’s ability to speak is becoming a casualty of a patent battle between two businesses is beyond my comprehension.  This is a patent issue, a monetary issue, a legal issue, a business issue.  This should be handled in a business vs. business way, within the court system.  PRC’s decision to fight for the removal of this app from the iTunes store isn’t just an aggressive move against Speak for Yourself, it’s an attack on my child, the other children using this app, and the children who are ready to begin using this app but now cannot.

Maya, talking to me after school

If you would like to lend your voice to this fight, spread this story.  This is not ok, and people should know about it.  If you are compelled to voice your opinion, here are some places that may interest you:

If you would like more information:

Edited on 6/13/12 to add:  Author's Note: I have added a new post answering some of the frequently asked questions spurred by this post.  That post can be seen here.

Edited on 6/14/12 to add: A petition is now up on asking that Speak for Yourself be returned to the App Store immediately and allowed to remain there throughout litigation and regardless of the lawsuit results. Business disputes should have business resolutions, and those who need this app to communicate should be assured that they will not lose it. If you agree, please sign and share. Thanks! 



Maya turns 4!

Here is an overdue assortment of pictures from Maya's 4th birthday party-the theme (if you interpret the word "theme" very loosely) was Alligators & School Buses, as those are her two favorite things in the whole world.

In the morning we all helped tp set up.  Here, Maya wrangled the alligator balloon . . .

 . . . while Parker made sure that this alligator wasn't going to cause any trouble.

Once Parker declared him safe, Maya needed to hug both alligators.

The scene was set . . .


. . . and the birthday girl was ready to party!

We gave Maya a sneak peak at her school bus/alligator cake:

 . . . and she liked it!

(It's a good thing that she gave it her seal of approval early on, because when it was time to sing Happy Birthday . . . well, you'll see)

Maya had a great time playing with her friends . . .

 . . . and celebrating :)

But when it was time to sing Happy Birthday and blow out the candle . . . well, she wasn't having any of it:
Dave: Birthday cake is the best!
Dana: Aren't you excited to sing and eat cake?
Maya: You're kidding, right?  I was extremely clear.  No singing. NO singing.

Oh well.

The guests were barely out the door before Maya realized that she could do some major decoration demolition:

Happy 4th birthday, Maya :)  We are eagerly looking forward to your next year, sure to be filled with giggles and good times!

Thursday, June 7, 2012

I'm the mom, but I'm not "just the mom"

This is an open response to the types of comments mentioned in the first paragraph.  If you're not involved in special needs care and therapies, these abbreviations might help you out:  AAC= Augmentative and Alternative Communication, SLP= Speech-Language Pathologist, AT= Assistive Technology, ATP= Assistive Technology Professional.

Over the past few weeks I’ve encountered an interesting divide/debate . . . an undercurrent in some comments made online by professionals (SLPs, AAC specialists or AT specialists) that either state or imply the following:  Parents should not be able to just choose iPad apps to use therapeutically or with regards to AAC (augmentative and alternative communication---using an app to communicate, the way that Maya does) without deferring to a professional. 

For obvious reasons, these comments make me bristle.  They imply (and sometimes state) that parents are naïve and uneducated about apps/devices and are just looking for a quick fix.  They also imply that parents are choosing to take matters into their own hands, rather than acknowledging the far more likely alternative: we would love--- LOVE--- an expert to arrive at our door, thoroughly assess our child, select the appropriate AAC device or app, design a plan to introduce that app, train us in how to implement it at home using best practices, and meet with us regularly to help the family progress in using the AAC.  

Please.  Send them our way.  Or tell us where to find them.

Because I looked.  And I searched.  And I wasn’t successful.*

I live in New York City, and while the city is short on therapists (like everywhere else) it generally has a solid amount of resources, if you’re willing to search for, fight for, and wait for them.  We have been fortunate enough to have extensive therapies for Maya from the time she was about 10 months old.  I’ve come to know a lot of therapists.  Maya attends an excellent preschool for children with special needs, staffed with extremely knowledgeable professionals. I am plugged into a network of special needs parents who know “all-of-the-best-xyzs” (doctors, therapists, homeopaths, etc).  I thought, surely, that when it was time for us to dive into AAC there would be a handful of “experts” at our disposal.

I was wrong.  Well, mostly.

Last fall, when I felt like it was time for Maya to move from her Word Book and commit to a legitimate, long-lasting, high tech AAC solution (as opposed to just the customization of Proloquo2Go that I had toyed with at home), I did what all parents do: I asked the professionals. Because that’s what we’re supposed to do—ask the people who work with our children for input and advice.  Certainly, they are more informed than I am about the available options in communication technology, right? 

As it turned out . . . not really.

And let me be very quick to say that this isn’t their fault.  Special educators specialize in meeting the diverse educational  needs of children with disabilities, but aren’t required to stay up to date on the changing field of assistive technology (which is a huge, rapidly shifting world, especially when iPad apps are considered).  Physical therapists and occupational therapists clearly weren’t the people to ask (except perhaps for physical access ideas).  And the SLPs?  I love our SLPs (all 3 of them).  The PROMPT therapist that we see focuses on oral motor stuff—she wasn’t going to guide our device selection.  Our home therapist loves and pushes Maya every week, and she knows a staggering amount about language development and eliciting sounds from my willful child . . . but AAC technology is not one of her areas of expertise.  Nor should it be, actually . . . or so says ASHA, the licensing body of all SLPs.

Per my friend the ATP: ASHA does not obligate SLPs to have expertise in AAC.  Most speech programs here in New York City offer future SLPs no more than one generalized class in AAC (and rarely have access to real devices or apps).  ASHA’s position is that the field of AAC is not owned by Speech, but rather based on experience:

"The SLP is expected to be able to recognize the limits of his/her expertise and issue referrals to appropriate colleagues as necessary."..."The SLP must acknowledge the need for expertise from other service providers who may include, but certainly not be limited to, physician, occupational therapist, physical therapist, vision specialist, rehabilitative engineer, teacher, psychologist, behavior consultant, and social worker. No less significant is input from parents, spouses, employers, and significant others.”**

Anyway, back to the SLPs:  The SLP at Maya’s preschool did exactly the right thing-she called in the assistive technology (AT) experts by writing a referral to get Maya an evaluation with the AT team that serves the NYC DOE.  At the time of the evaluation Maya had been working with the Word Book for 1-2 weeks and I could see how quickly she was soaking it up.  She had some experience navigating through screens on Proloquo2Go (an iPad app), although I was disenchanted with its organization.  I had already hosted representatives from Dynavox and Prentke Romich in my home, unbeknownst to the AT evaluation team, to evaluate their devices and determine whether one would fit Maya.  I eagerly waited to meet with the team, let Maya (then almost 3.5 yrs old) show off her emerging skills, and get matched with a dynamic device that would grow with her.

But they said she wasn’t ready. 

She was ready.

They said “We know, mom, that you want her to be ready, but a dynamic device would be too much for her right now.”

Even though she already had experience using a dynamic device. 

They said “Don’t worry, she can use this instead, and we’ll come back to reevaluate her in a year.”

Don’t worry, little girl, we will come back next year and maybe then we will grant you a device with more words.  Until then you can manage with 32 carefully chosen words at a time, we are sure.  You don’t need more words than that.  You may think that you do, but we know better.

I heard “Of course you think she could do more, because you’re the mom.  Trust us about this, though . . . we’re the experts.  We did, after all, spend 3 hours with her in this small, crowded office.  We know what she needs, and what she’s capable of, more than you do.   We are qualified to make this assessment.  You are not.”

And I hung my head and signed their papers, just to get any AT on her IEP, and when I left the building and lifted my head silent tears slid down my cheeks and I resolved, again, to figure this out on my own.  Because although I was “just the mom,” and while I wasn’t technically qualified to determine and implement AAC, I was clearly going to be the best shot that Maya had.

Again: I’m in a large city.  I’m an outspoken advocate.  My daughter is in an excellent special needs preschool.  I was willing to ask for help and consulted with a private ATP prior to the DOE AT evaluation.  And despite all of this, I still couldn’t locate an AAC specialist who would be able to match us with a product, design an implementation plan, and work with us.  Which makes me wonder how many people across the country (and worldwide, for that matter) have no choice but to try to go it alone . . . not because they feel like they are the best qualified person to make these AAC decisions, but because they’re the only candidate who’s shown up for the job.

And lest you think that I’m advocating for parents to write off professionals and just do it themselves----this is where I clearly state that I think that some parents go about do-it-yourself AAC (and do-it-yourself many other things, for that matter) the wrong way.  Picking a communication app because you saw it on 60 Minutes, or your neighbor’s friend’s kid used this app to communicate, or it-was-one-of-the-cheapest-ones-in-the-iTunes-store-so-why-not-just-try-it-out-because-we’ve-got-nothing-to-lose-anyway . . . these are the wrong ways.  You’re not trying out a new couch, you’re choosing an entire communication system that you hope your child will be interested in and become attached to.  And, if you’re looking for something long-term with growth potential, you’re not just picking a cheap app that will say a few words, you’re attempting to pick a system that has been developed by intelligent people who know about language, designed to make good linguistic sense.  I was all too aware that the device/app that I chose for Maya would affect the way that she learns to process language, the way that she begins to form phrases and sentences, the actual mapping of her brain.

It’s a lot of freaking pressure.

If you’re doing it right, you don’t just pop open the app store and download something.  Because even if you bought the best app around---here’s the key: the app doesn’t magically unlock language (not for most people, anyway).  Researching, buying, and downloading an app is the easy part (although it sure didn’t feel easy at the time).  Per my ATP friend, “Apps have very little to do with the effectiveness of AAC, it’s the configuration and implementation of the AAC approach that is far more important.  The app doesn’t elicit speech/communication from a person, the treatment approach does.” 

You need to not only research the devices or apps, but how to implement them. When the app is downloaded, and you sit down with your child and open it up . . . well, then what?  There’s a lot of homework to be done before sitting down at that table.

And so, I’ve done my homework (and continue to, daily).  I’ve read myself in circles-speech websites, scientific journal articles (with a highlighter, a notepad, and a window open on the computer in which I can google diagnoses, protocols, and best practice techniques to get a clearer understanding of the information in the paper that might initially go over my head). I read the LAMP manual, and a handful of speech, apraxia, and late-talker books. I follow speech and AAC people on Twitter, and I devour the links and information floating through their online communities.  I attend workshops: on apps for kids with special needs, on early literacy for children with special needs, on the Kaufman Protocol for children with apraxia, and I’m heading to the ISAAC conference in Pittsburgh this summer. 

I’m learning as much as I can, but it sometimes still feels like not enough.  Not when the reality of the situation is that the decisions that I make when I sit down with Maya and the talker are teaching her language.  I am showing her how to form sentences.  She uses the app at school, but most of the teaching is occurring at home with me.  The payoff is gigantic, but the pressure is great.  And I don’t want to mess it up.

I am not an expert.  Maya is the first preschooler that I’ve ever worked with, on AAC or otherwise (I used to teach middle school science, which, as I’m sure you can imagine, is very different than preschool linguistics).  I recognize my limitations as “just the mom” . . . and, rather than naively or ignorantly plowing ahead, assuming that I know best, I attempt to do what any intelligent person would do when they are unsure of how to best proceed.  I find someone who knows more than me, and I ask them.

To that end, I’m eternally grateful to the SLPs and ATPs that I’ve connected with online and off, who answer tweets and emails when I get stuck on how to move ahead following best practices, rather than just haphazardly.  A small group has been willing to reach out without judgment---without telling me that I “should really find a specialist to work with”, since I’m “just the mom” (because believe me, I’ve gotten responses along those lines, too).  And answering my questions is no small feat, since with every bit of progress that Maya makes I find myself facing another wait-how-can-I-do-this-best moment.  Here are some recent examples:  When using the device, should I model “I am hungry” or “I’m hungry”? What phrases should be considered as stand-alone buttons? Can you share some ideas for highlighting core vocabulary across many different settings? When do I start prompting her for more words, or building phrases like “I want milk” instead of just “milk”, and when do I back off, not wanting to frustrate her if she’s clearly telling me something with her one word choice?  What about the “I want” debate---I’ve heard some people speak out against the overuse of “I want”s, so when is it appropriate and when should they be avoided?

I know that I’m not an expert, and I make no claim to be one.  I also know that I’m the best option that Maya has right now, and that I will guide her towards more fluent communication with the best of my ability, consulting as many professionals as I can along the way.  And I will say, with certainty, that at this point I know a solid amount about apps, devices, and best practices in implementing AAC.  None of the therapists that we’ve worked with have ever expressed concern or displeasure that I am the leader of our push into AAC.  Even ASHA seems to support the I’m-driving-this-bus-myself position that I’ve found myself in, stating "It is strongly recommended that the AAC team be driven by the client and his/her family to the greatest extent possible. Part of the AAC program should be dedicated to finding and implementing ways in which the client can have maximal input regarding the disposition of the program."**

So, I may be the mom, but I am not “just the mom.”

I resent the assumption made by some professionals that parents who take matters into their own hands are taking the easy way out by just buying any app instead of working with a specialist.  My hand was forced.  This wasn’t my plan.  If there had been experts available I would have gladly passed this job to them, but there weren’t and so here we are.  I also resent the assumption made by some professionals that parents who take matters into their own hands are uninformed by default.  I’ve done everything- every thing- that I can think of to educate myself about AAC.  I looked before I leapt.  And while I can’t speak for them personally, I’m sure that there are many, many other parents who have done the same.

I hope that our story brings to light the personal aspect of what has happened when a family becomes the driving force behind the decision to implement AAC.  My goal here is to show that many, many parents feel obligated to push for AAC, whether they are trying to buy devices privately or to set up a plan with an iPad app, not because they feel like they know it all or they’re trying to take the easy way out . . . but because they have a child that they desperately want to give a voice to, and they don’t know who else to ask for help.  In addition, many of us are devoting huge amounts of time, energy, and money into educating ourselves (and, in turn, educating our family members, friends, and professionals who work with our children) about how to implement AAC and teach our children.  We are not naïve.  We are trying our best.

I’ve met parents who think they know everything (when they clearly don’t) and professionals who think that they know everything (when they clearly don’t).  I’ve also met individuals in each of those groups who are amazingly well versed and knowledgeable.  A little humility, combined with the fact that we’re all working towards the same goal, goes a long way in each direction.  Parents or professionals, we’re all just people who are sincerely doing the best that we can to help children find their voices. 



*I was able to find one extremely highly regarded AAC specialist in the city, but her waiting list for an evaluation was months long. I couldn’t make Maya wait months when I could see that she was ready.  She didn’t deserve that.  There must be others out there, but I couldn’t find them when I needed them.  I imagine many other parents, worldwide, face the same challenge.

**ASHA quotes come from this article: Roles and Responsibilities of Speech-Language Pathologists With Respect to Augmentative and Alternative Communication: Technical Report and can be found in the "Roles of the Speech-Language Pathologist" section

Monday, June 4, 2012

To everything, there is a season (Big-Girl-Bed season just arrived over here)

A few months ago we moved Maya into a toddler bed.  Well, we didn't move her as much as we just took off the front wall of the crib and put the toddler bed rail on.  We called it a big girl bed and she was proud. 

The initial plan was to leave her in the toddler bed and get a new crib for the baby this fall, but that plan changed when we realized that our tall girl (she's over the 90th percentile for height on 4 yr olds) wasn't fitting in the toddler bed that well.  She constantly had limbs hanging over the edge of the bed, and often fell out onto the floor.  (To be fair, the assortment of alligators, books, princesses and plastic school bus that she takes to bed occupy significant space as well.)  So we adjusted the plan-we would get her a twin bed this summer, baby #2 would inherit her crib. 

Last week the plan was adjusted again---we shifted moving into a bed "sometime this summer" to moving into a bed ASAP, after seeing her sleeping standing up 3 days last week (her torso was laying in the bed, but her legs had fallen out so that her feet were on the floor).  That can't be conducive to restful sleep.  We took her mattress shopping (she thought that a store full of beds was basically the coolest thing ever) and by tonight she was ready. 

Yesterday the mattress arrived.  She warmly welcomed it with kisses.

I took a few sentimental last pictures of the room before the crib was gone.

Maya is an excellent assistant . . .

 . . . and a good cheerleader, too. 

She was so, so excited (thankfully, as I was nervous that she might be sad to see the crib go, despite her big girl bed enthusiasm).  Just when we thought she couldn't get any more excited, Dave went to bring in the new big mattress . . . and she just about fell over with delight.

My new big girl bed!!!!

In her new bed, my big girl looked kind of . . . little.  And alone.

So we loaded in her usual bedtime stuff.

 And added a safety rail.

She got busy setting up her princesses right away.

And tested out her new pillow, too.

And here she is, sound asleep.  The princesses are apparently set up to stand guard while she sleeps.  As are the alligators.  Obviously.

Sleep tight, big girl.