Tuesday, August 28, 2012

One small upload to the iTunes store, one giant leap for an AAC company

This is a semi-update (one with a small series of twists and turns) to the Prentke Romich Company & Semantic Compaction Systems vs. Speak For Yourself lawsuit.  If you are new to this storyline or need a refresher course:  here is the original post about the lawsuit, here is a post about how PRC/SCS asked Apple to take down the app (and they did), here is a post about why my daughter & two other children are legally moving to intervene in the court case, and here is a post about how PRC/SCS asked Google Play to take down the Android app (and they did).  All caught up?

Prentke Romich Company is a company that makes AAC devices.  These devices have served tons (I'm not going to hazard a guess at how many, as I have no clue) of nonverbal children and adults.  Their language system is very, very smart.  For many years, users of their devices (and non-users, as well) have clamored for PRC to step into the iPad revolution and provide an AAC app, using their language system, that would be competitively priced (as opposed to the hefty price tag of their dedicated communication devices).  They have released a few apps over the past year, but nothing that would serve as an actual communication app.

If you're a reader of the blog, you also know that PRC is suing the company that makes my daughter's communication app, Speak for Yourself.  Interestingly, PRC has seemed determined to remove SFY from the market entirely (per a statement made by Speak for Yourself):
"To be clear, every business solution proposed by PRC required shutting down the App. From our point of view, shutting it down would be irresponsible. For that reason, and that reason alone, PRC’s “business solution” was not acceptable to SFY then and it is obviously not an acceptable situation for the AAC community now."
It was a position that seemed rather aggressive, considering that the company had no competing AAC apps in the iTunes store, nor did they indicate any plans to enter the app market with a full communication app.  It's a position that makes a lot more sense this evening.

Earlier today, PRC released a full communication app into the iTunes store, featuring their language system. 

This. Is. Huge. 

This is huge for current or former ambulatory users of PRC devices who are familiar with the language system and would like to transition to using an iPad as their communication solution, rather than carrying the burden (literally) of a heavy device-this app should fit perfectly for them.  This is also huge for individuals, both children and adults, who are able to warm quickly to PRC's language system and will be able to use this app as their voice.

Whenever a new, well-researched, intelligent AAC app comes onto the market, it is a huge boost for all nonverbal people---because having choices, having the ability to pick a system that is intuitive for each individual user, will ensure that more nonverbal children (and adults) are able to find a system that works for them, and makes sense for them.  When you think about it, that's the goal---to find something that lets people speak independently, as quickly and efficiently as possible, and with a rapid learning curve.  If you couldn't talk, the last thing that you would want is to have one particular app hoisted upon you---you would want to be able to try a few and then say "this one works!"  Accordingly, I am happy for the future users of the LAMP app, and I am glad that this company has dove into the iPad market.

What does it mean for us?  For Maya? 

Well, nothing.

She has a communication app that she has internalized as her own, with a language system that makes sense to her (and is becoming increasingly intuitive for me).  She understands the icon language of this app, knows how to open and close all of the words, and has moved from only having 30ish words open (when we started using the app) to slightly over 500 words open.  Speak for Yourself is how she talks, and we still are hoping for a resolution to the ongoing court case that will result in the return of SFY to the iTunes store, and the continued sale of it on the Android market.

As for the court case, if you're the type to poke around in legal filings you would have seen that there was an interesting development in the case earlier this week.  After meeting for court-ordered mediation, Speak for Yourself and PRC/SCS jointly filed a request with the court to get a 30 day stay (delay) in the court case, citing that they had already scheduled another mediation session.  So the court case is now paused, and the mediation clock is ticking---slightly under 30 days left.  Between this and the PRC app release, I can't really make heads nor tails of what may be going on, but I'm going to keep holding out hope that both of these apps will be available to serve the families who need them to talk with their nonverbal loved ones. 


Thursday, August 23, 2012

The Post-Traumatic Stress of Pregnancy After Special Needs

I haven’t written much about this pregnancy, because it’s been challenging to sort out my conflicting subconscious thoughts into something that would make sense—something that wouldn’t seem too dark (because we are elated to be having another baby) but would also honor the fact that pregnancy is much trickier, psychologically, after having a child with special needs. As I look around my apartment at the newly re-assembled crib, and piles of baby stuff emerging from storage, I think that the time to talk about it has probably come.

Exactly seven months ago I found out that I was pregnant.  I watched the second line appear on the test with a mixture of excitement, anxiety and disbelief  . . . feelings typical of any woman who’s just peed on a stick and is staring at that second blank spot, mentally willing a line to appear and then somehow still shocked when it does.

But there was another feeling too, floating towards the top of my consciousness, forcing itself to the surface to pop my jittery, excited bubble of glee . . . it whispered “you know better. Be careful. Don’t get too happy, don’t forget what can happen.” 

I pushed it down.  

It said “Don’t set yourself up to be blindsided again.”  I tried to ignore it. It said “Don’t expect everything to go well, and it won’t hurt as much when it doesn’t.”  I tried to shrug it off.  It said “You know better.  Don’t forget that you know better.” 

It was right.

I do know better.  And not in any sort of wise-beyond-my-years way (well, maybe sometimes, a little) but more in a PTSD way . . . like a driver after a car accident who will never be quite as at ease behind the wheel.  I’ve intermittently struggled throughout this pregnancy to find an outlook that made sense and would stick.  There were clear, oh so clear, differences between my mentality this time around versus my first “uneventful” pregnancy.

In the waiting room of my obstetrician’s office, I looked at the visibly pregnant women and thought things like “Oh, I hope that this all goes well for you” instead of “Oh, good for her! Another pregnant lady!”

Going in for ultrasounds, I walked past the other rooms in use and wondered if someone might be getting life-altering bad news, instead of wondering if someone might be hearing their baby’s heartbeat for the first time.

When my screening test results came in (we had all of the run-of-the-mill screening tests, the same as we did with Maya, nothing more and nothing less) as normal (as they did with Maya) I was happy, of course, but reservedly happy, because I now know of several hundred disorders that would never make themselves known in something as simple and silly as prenatal screenings.  The first time around I thought that “typical” results were a big, fat “Your baby is perfectly healthy!” stamp on the medical record . . . but over the past few years we’ve seen a truckload of “typical” results, despite knowing that things here are not typical.  So I smiled and thanked the doctor and left feeling somewhat relieved for “typical” but when my inner voice said “Don’t let your guard down . . . you know better” I replied  “Don’t worry, I won’t.”

When I see other pregnant women shopping at Babies ‘R Us, or talking to their friends, or in line at Starbucks, I see them through a bifocal lens of congratulations and trepidation.  I smile at them in accordance with the sisterhood-of-pregnant-women unspoken rules, but my inner voice wants to whisper to them, too, to say “Are you expecting everything to be ok? Because it might not be . . . and it will hurt less if you know that might happen.  And things will be ok, either way, they really will . . .” but I know that I can’t let that happen.  And I wouldn’t have wanted to hear it during my first pregnancy, either.  I'm fairly sure that I deliberately didn’t read anything about birth defects or terrible delivery stories or things-that-could-go-wrong . . . because why should I?  Why not have a happy 10 months of assuming the best and waiting excitedly?  What good would preemptively worrying do me?  I wanted to maintain my ignorance, thank you very much.

But after having a child with special needs, you can’t un-know.

And so, this pregnancy has been different.

Oh, it’s been happy, for sure.  I’ve watched my body shift and expand, and felt the hiccups and kicks and stretches (which are kind of painful) of this little guy with delight.  This will likely be our last baby, and I’m trying to look past the end-of-pregnancy discomfort and savor the alien magic of watching my belly wobble and shift as the baby does his nightly calisthenics.  We've picked a name (probably) and have talked excitedly with Maya about her brother.  His room has been painted, and over the past two weeks we’ve assembled some furniture and made lists of things-to-buy and things-to-get-out-of-storage.  With 6 weeks left until my due date, things are slowly starting to come together, and I’m enjoying the nesting phase and embracing the urge to get my household in order before things get shaken up with the new arrival.

I am happy, and I can’t wait to meet this new baby.  And I seriously can’t wait to introduce him to Maya.  (Also, I can’t wait until I can gracefully get out of a chair again, but that’s a different story.)

But beneath this happy anticipation is also some sort of quiet warning . . . like a low cello note hidden in the background of a composition beneath some joyful, vibrant violin music.  It’s just a hum, a quiet “don’t forget”, a reminder to not float away in the bubbly good times because there can always be something.  It’s not something that I actively worry about, it’s not something that I even pay much (if any) conscious attention to . . . it’s just a hum, a quiet, constant hum.

I imagine that by the time I check into the hospital and settle in my labor & delivery room that hum will be loud, my nerves on edge, split with both happy anticipation and “what if, what if, don’t forget, don’t let your guard down.”  Both sides of the music loud, loud, waiting to see which will drop off in the next few hours, or next few days.   

When I settled into my hospital bed to deliver Maya, there was no low warning hum.   It was nice to be young and hopeful, putting any nervousness to rest with the mantra “millions of perfectly healthy babies are born every day.”  I’m sure that I’ll think the same thing this time, but the reassurance that it brings will not be complete. And then the inner voice will start again, with a different message, since the time for warnings will have passed, “It’s time to let go now, to let your guard down.  There’s no warning to hold on to now, it’s time to let go and see what the next chapter will bring.”  And I imagine that I will listen and surrender, putting the time for wondering aside and embracing our new beginning as a family of four.

34 weeks


Tuesday, August 14, 2012

Et tu, Google Play?

Another Briefing in the Continuing Saga of PRC/SCS vs. Speak for Yourself

If you’re new to this story, let me get you up to speed:  In March, 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.  Maya’s voice, and the voices of all of the other users of Speak for Yourself, was being threatened in a very real, serious way.  In June, that threat was heightened when PRC/SCS requested that Apple remove the Speak for Yourself app from the iTunes store, and Apple complied with that request (despite the fact that PRC/SCS never asked the court for an injunction to halt the sales of the app—a move that would have allowed for due process and the decision of an impartial judge).  I wrote about the take-down and its potentially grave implications for Maya and the other users of the app, which can be seen here.

At the time of the initial lawsuit, I was shaken.  I worried about what would happen to the app that my daughter was growing quickly reliant on as her primary means of communicating. 

At the time of the removal from the iTunes App Store, I was re-shaken---like, to an earthquake level of shaken-ness.  In a panic, really.  By June,  Maya clearly identified the app as her voice.  If I told her that I didn’t understand what she was trying to tell me, she would rush to the talker, turn it on, and use the app to tell me what she wanted.  Immediately after finding out it was out of the iTunes store, I literally jogged across the apartment to our back-up iPad to check on the app and disable our wireless connection.  I thought about the confusion (rapidly following by anger) that Maya would experience if she turned on the talker one day and the app wouldn’t work. And I cried.

After writing about the removal of the app from the iTunes store, I received a lot of comments and emails---some from within the special needs community, some from other AAC users/therapists, and many from within the tech community.  One of the refrains that I heard from the tech community was negativity about Apple’s total control of their devices---once something is out of the iTunes store, there’s no way to buy it for an iPad.  “You wouldn’t have this problem if the developers had designed the app for Android,” I heard.  And, apparently, the Speak for Yourself team heard the same thing. 

And so, two weeks ago, Speak for Yourself released a version of the app for Android devices. It went up in Google Play, which (as I understand it) is kind of the big, go-to Android marketplace.   While we are still using our iPad copy of the app (due to the availability of a better case for the iPad and a keyguard, which is a necessity for Maya), the presence of the app on Google Play was reassuring---if the iOS6 update this fall messed up our iPad app, we would at least have an option to fall back on (not an ideal option, but an option).  We had a safety net. 

A few days ago, Google Play removed the app from their store, citing the court proceedings.

By now it seems that I’ve lost the ability to be shaken.  I’m not panicked or outraged or up in arms, I’m tired and numb.  I’m disappointed . . . in both the plantiffs in this case, who appear to be continuing their efforts to keep this app off the market and therefore out of the hands of nonverbal people who need it, and in the marketplaces who are so quick to pull the take-down trigger, despite the fact that there are no court orders to do so, and no infringement has been proven.  Considering the fact that (as I understand it) the majority of patent cases are resolved with some sort of monetary arrangement, I don’t understand why the app needs to be pulled during the litigation. 

With an Android app there are multiple marketplaces (besides Google Play) where the app can be offered for sale.  However, logic would dictate that if the app appeared in a new store tomorrow, that store would soon get the same take-down request from PRC/SCS.  And past experience would imply that these stores will likely comply with that request, despite the whole innocent-until-proven-guilty philosophy that I’m used to hearing about.  I guess when money and legal things are involved the modus operandi is to err on the side of being overly cautious.  I get it, I guess, but this isn’t an alleged knock-off of Angry Birds, it’s a communication system for people who need it. 

The Speak for Yourself team is able to keep the app available by selling the Android version directly through their website.  It is up there now, and I would imagine it will remain there unless an actual court order requires it to be taken down. 

As for Maya, she will continue to use the iPad (with its case and keyguard), which she knows and loves and is able to use independently, for as long as possible.  Her vocabulary continues to grow rapidly, and she delights us with her cleverness and humor.

As for me, I remain hopeful that after this case is resolved the app will be reinstated in the various marketplaces that felt pressured to take it down during the litigation.  I continue to share the news of this case not only because of the effect that it has on my family, but because of the larger implications for any families who use an AAC app to communicate.

Saturday, August 11, 2012

Beach Trip (and AAC on the road)

After flying in from ISAAC late last Thursday night I had two days to unpack, regroup, and repack before we headed out for a few days at the beach with my family.  We all had a delightful time (although I sadly had to skip boogie boarding this year, for obvious reasons). Maya not only loved being with her extended family, but she loved the ocean and the beach (last year she liked the beach, but not so much the ocean).  Great times were had by all.

But there was a little problem . . . one that other high-tech AAC users might anticipate, but many others might not see coming.  If you've ever been to a beach, you know that sand has a way of getting into everything, and never leaving.  Ever.  Because of this, there was no way we were going to bring the talker to the beach, with or without its fancy case (to be clear, we took it to the hotel, but not out on the actual beach).  And so I scrambled to come up with some sort of low-tech AAC system that would allow her to speak while playing in the sand and water.

What I came up with might not be perfect pedagogically speaking, but it was perfect for Maya.  And as I learn more about how to ideally incorporate AAC into daily life, I'm also learning that "ideal" is a hard place to aim if you're kind of Type A (which I sometimes am) and that maybe the most important thing is just to try everyday, to be mindful, to model, and to keep at it.

Let me show you what I came up with, explain how I did it (it's easy, you can do it too) and then point out how it can be modified to be a bit more ideal.

To put it simply, I made 3 boards, connected with a binder ring.  Here's Maya with the boards in action at the beach: 

 "I need more water in my bucket"

 "I'm in a hole" (dug with love by her daddy)

The first board consisted mainly of core vocabulary (only the core words that I thought would be most essential while playing in the sand), laid out in roughly the same orientation that she's used to on the main page of her communication app.  I also added in pictures for the family members who were on the trip with us. 

The second page was really the one that she used the most.  On this board I included fringe words that I thought she would need to talk at the beach.  I intentionally included blank spots for words that I didn't anticipate needing, and brought a few permanent markers along with me so that I could add things in on-the-go.  The words with the green backgrounds are verbs, which are colored according to the Fitzgerald key, if you're interested in that sort of thing (and they are literally colored, with a crayon, because I forgot to print them with green backgrounds and was too tired to do it again).

The organization of these words was done in a way that made sense to me---places went in a column down the left, the top row was beach-set-up stuff, verbs grouped together, etc.  This is not according to any system, I just thought it seemed organized and semi-intuitive.

(The third board, unpictured, contained tiles for all of the colors and a handful of other adjectives: hot, cold, wet, dry, clean, dirty, etc.)

If you're into the DIY details: The picture tiles were created and printed through the Custom Boards app by Smarty Ears.  The symbol language is Smarty Symbols, which is the icon language used by her communication app, Speak for Yourself (clearly, these are pretty basic boards and could be executed with any symbol language that you might be currently using). I cut the tiles out, organized them on blank sheets of computer paper, and taped them down with scotch tape.  Then I broke out the trusty lamintor, laminated & hole-punched.  (Seriously, everyone needs a laminator, especially if you're DIY-ing AAC stuff at home.)  A tip: if you're going to get homemade boards wet, hole punch the sheets of paper, then laminate, then re-hole punch, then run through the laminator again to seal the edges that you just punched.  I didn't think about this and we ended up with a little water leakage near the punch.

This system served us well, especially given the fact that we were on a 4-day vacation and I just wanted something simple that would give her words she needed without creating a system that was so complicated that she wouldn't want to engage with it on the beach (and we would all get frustrated).  Truth be told, it would have been easy to not use the boards at all--to just guess what she wanted (which isn't that hard on the beach) . . . but we're trying to encourage the most fundamental truth of using AAC---something should be there to give Maya the ability to independently say what's on her mind, instead of us guessing while she either says yes or no. 

A few other ideas: A twitter friend (and actual AAC expert) mentioned to me after returning home the possibility of laminating boards/cards/strips of words and attaching them to Styrofoam for accessibility in the water---how brilliant is that?  Then I started to think about how you could attach words to tons of things----for example, the bucket could have words taped to the side with packing tape (bucket, full, empty, fill, dump, pour, sand, water, in, out).  There are a lot of possibilities if you figure out a way to make word tiles and have clear packing tape and a laminator.

It seems to be a good idea to have some sort of low-tech back-up system in place, for beach trips or pool trips or for other messy things that aren't jumping to mind right now.  If I wanted to improve this system of pages-on-a-binder-ring, and make it more advanced, it would likely involve printing some screen shots of the pages on her app for consistency's sake.  There are some issues, though, with how much flipping it would take to build thoughts/phrases/sentences.  I'm not really sure what the ideal solution would look like at this moment (and I say "at this moment" because a low-tech solution that would be ideal for 4 year old Maya would likely be different than what would become ideal for 5 year old Maya).

For now, this was good enough.

A few other beach pictures:

Boogie boarder in training

Maya & Dave

Feeding the seagulls

All 3.8 of us

Disclaimer: As always, I am not an SLP or an AAC specialist, I'm just the mom of an AAC user and I'm primarily figuring out and teaching her how to use her system on my own.  I'm sharing what I've figured out in an effort to help the other parents who are driving their own AAC buses, but take what I do with a grain of salt----I try to use all of the best practices that I've learned/seen, but I'm probably making mistakes as I go. Also, I am not affiliated with (nor do I make any money from) the apps mentioned in this post.


Friday, August 3, 2012

Learning new things & saying new things

I'm back from the ISAAC conference. My head is swimming with ideas and my notepad is full of things to transcribe.  More than just specific ideas, I feel like my way of thinking about AAC has sharpened . . . instead of feeling like "just a mom" floundering as I try to incorporate AAC into our lives, I now have more focus, have absorbed some concrete concepts about how to be increasingly deliberate in how I support Maya's use of her device, and - as a bonus- I got some validation, too. (For a novice, I seem to actually be on the right track.)  After I have the time (ha ha) to compile and process my notes I'll definitely be putting up a post (or several) about my main take-aways.  On a selfish note, I also got to listen to a bunch of the really big people in the field, and to meet a lot of people that I "know" from online.  Even though I may have scared some people with my hacking cough, it was a win-win-win for me.

Today was my first day back at home (I arrived back in the city late last night) and I was able to happily soak up a bunch of time with my family.  Maya's school notebook said that she was very talkative today at school, and sure enough she was chatty at home as well.  She took us all by surprise when she was using the talker to talk about days of the week (which she loves to talk about) and suddenly turned to us and said (with her mouth), "Monday."  Monday!  She's a big fan of Monday because it's the day after the weekend when she gets to ride the school bus and play with her friends at school, and tends to say it often with the talker.  But as far as a spoken word goes, the closest approximation that she's had to "Monday" prior to today was just "Mah." 

Suddenly, today . . . "Monday."