And the winner is . . .

This is (hopefully) the final installment in my series of posts about the lawsuit that has threatened the iPad app that my daughter uses to communicate. 

 

A brief recap:  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 (Semantic), two much larger companies that make designated communication devices (not iPad apps).  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/Semantic requested that Apple remove the Speak for Yourself app from the iTunes store, and Apple complied with that request (despite the fact that PRC/Semantic had 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). The Speak for Yourself team diversified by creating an Android version of the app, and PRC/Semantic responded by issuing a similar take-down notice to the Google Play store (which Google Play also complied with). 

 

In the meantime, 3 users of the Speak for Yourself app (including Maya) moved to intervene in the court case, ready to fight for their right to an app that had become their voices.  As we waited to hear the court’s response to our motion to intervene, the parties in the case entered court-ordered mediation . . . a standard step in many patent disputes, and one that does not typically yield results. 

 

But in this case, it did.

 

Yesterday a joint statement was released, which stated that the parties involved had reached a settlement and that the case was dismissed.  Here is that joint statement:

U.S. Patent Nos. 5,748,177 and 5,920,303 and certain Semantic copyrights relating to the Minspeak®/Unity® language system for augmentative and alternative communication. As part of the settlement, Semantic and PRC have agreed to withdraw their infringement or take down notices. Under the license, Semantic and PRC will not issue any new infringement or take-down notices to providers associated with the SFY AAC software application. All other terms of the settlement an

Semantic Compaction Systems, Inc. (“Semantic”), Prentke Romich Company, Inc. (“PRC”) and Speak for Yourself, LLC (“SFY”) have announced the settlement of the lawsuit and all claims related to the SFY augmentative and alternative communication (“AAC”) software application. In connection with the settlement, Semantic has agreed to grant a non-exclusive license as to two of Semantic’s patents, i.e., U.S. Patent Nos. 5,748,177 and 5,920,303 and certain Semantic copyrights relating to the Minspeak®/Unity® language system for augmentative and alternative communication. As part of the settlement, Semantic and PRC have agreed to withdraw their infringement or take down notices. Under the license, Semantic and PRC will not issue any new infringement or take-down notices to providers associated with the SFY AAC software application. All other terms of the settlement and license are confidential.

 

In translation, PRC/Semantic have agreed to license two patents and some copyrights to Speak for Yourself.  Speak for Yourself has agreed to pay to be a license-holder. PRC/Semantic have agreed to never again issue any take-down requests to stores that are hosting the SfY app, and they must contact the recipients of their previous take-down requests and ask that the app be reinstated.  The Speak for Yourself app will return to both the iTunes store and the Google Play store, so there will be Apple and Android versions available. 

So . . .  who “won” the case?

Well, not PRC/Semantic.  Their lawsuit was assertive from the start, and they seemed to be bent on the complete removal of Speak for Yourself from the market (as evident from their diligent, repeated take-down requests).  In June PRC issued a statement which, in part, cited the fact that they had approached  SfY with several “business solutions” before filing the lawsuit against them.  SfY responded with a statement of their own, pointing out that every single one of the business solutions required shutting the app down completely.  Now, months later, PRC has had to settle for a business solution that seems to involve licensing fees, but allows this app to return to multiple markets.  Interestingly, PRC has now come out with their own communication app (months after the start of this lawsuit), and the Speak for Yourself app will likely be one of its direct competitors.  So, while PRC will get some sort of licensing cut, I would imagine that this doesn’t feel like a victory to them.

Does that mean that Speak for Yourself is the winner?

Well, I don’t think so.  The creators of Speak for Yourself have repeatedly asserted that their app does not infringe on the intellectual property of PRC/Semantic, as noted in this statement from 6/14:  We want to assure our customers and supporters that we will continue our vigorous challenge to the validity of the PRC/ Semantic patents and defense against the claim that our App infringes on any valid patent – it does not.

Now, as part of their settlement, they’ve agreed to a licensing situation.  This decision expedited the return of their app to the marketplace by several months (if not longer) and closed out a court case that was likely stressful and expensive . . . but it also seems to mean that they have agreed to pay a fee for something that they believe doesn’t infringe in the first place. 

While it appears possible that SfY was open to a licensing agreement from the start (their only negative statement about PRC’s proposed “business solutions” being that they involved the shut down of the app . . . not that a monetary arrangement was somehow insulting or ridiculous in nature), their acceptance of one late in the game could leave  PRC devotees clamoring “See?  They must have been infringing if they are agreeing to pay something!”  or “PRC must have had a really strong case against SfY if they are willing to just bow down and pay fees!  Clearly, PRC comes out on top.”

And the SfY supporters could argue back “Wow, PRC must have known that they weren’t going to win in the end if they were willing to suddenly offer a licensing deal and let their competitor remain on the market rather than continuing with litigation.  They probably thought SfY would cave right in the beginning, and had no idea that this would turn into a small media storm, with waves of negative press.  Bottom line—the app is back, Speak for Yourself has won.”

But really, what’s the point in debating which business came out with the upper hand?  They both had to make concessions that likely weren’t what they had hoped for, and now the court battle is done, finally.  It doesn’t seem to me that either company was “the winner.”

But there definitely was a group that emerged victorious----AAC users. 

And this victory isn’t just for people who are using the Speak for Yourself app, either.

Certainly, the users of Speak for Yourself can now rest easy that the app won’t disappear from their iPads or Android tablets, and that updates to iOS won’t be incompatible with the app, rendering their voices useless.  Nonverbal children (and adults) who had been waiting to download the app will be able to purchase it, opening new doors to communication.

 

Users of Prentke Romich’s line of communication devices have won as well.  In the midst of this court case PRC released their own full AAC app for the iPad, a move that PRC fans have been requesting for years.  While it’s possible that it’s been PRC’s plan all along to release a full communication  app, it seems a reasonable assumption that the Speak for Yourself app, and resulting litigation, may have forced their hand a bit, or at least accelerated their timeline.

 

Finally, this case has set a precedent, one that says that AAC apps deserve some degree of respect and protection, and that the good ones are worth fighting  for.  When Prentke Romich (a huge name in the AAC field)  sued Speak for Yourself (a small start-up company with only one product on the market) it seemed likely that the small company would quietly die off.  I don’t think anyone expected the 2-woman team at Speak for Yourself to stand their ground and prepare for a long court battle.  I don’t think anyone expected the story to be picked up by TIME, the Huffington Post, and other news outlets (both nationally and internationally).  I don’t think anyone expected an online petition about this case would collect over 5,000 signatures.  I don’t think anyone expected users of the app to join together and enter the court proceedings, arguing that this is not just a product for sale, but a voice that we have a right to protect.

 

And I don’t think anyone expected these opposing companies to sit down for a month and a half of mediation sessions, each side making concessions and settling in a way that wasn’t ideal for anyone involved, except for the people who had the most to lose---the users of the Speak for Yourself app, who rely on it as their voice.

   

 

Meet Our New Addition, Will

It's been over a week since baby Will made his appearance, and things here are fantastic but busy.  We're feeling very lucky and I'm trying to soak in every minute of newborn-ness before it slips through my fingers.  Maya is a lovely big sister, delighted by Will and interested in checking on him and watching him . . . but not very interested in touching him, which is perfect because she's picked up a scary sounding cough at school. 

Here are a scattering of pictures from Will's birth day (nothing graphic, unless you count the first picture of my big belly), the hospital, and a few from his first week at home.

Thursday night, we went in for an induction.

Leaving for the hospital

On Friday night, Will was born.

25.5 hours later, meeting our boy

Dave meets Will

 

 

On Saturday, Maya came to the hospital to meet her little brother.

 

"He's waving at you, Maya!"

"His toes are so tiny!"

 

Maya brought a present for Will . . .

and Will had some presents for Maya, too.

 

 

On Sunday, Will came home.

Dave made Maya these fantastic "new big sister" stickers.  She's making a "smiling face" :)

Leaving the hospital

 Getting dressed to go

 

 I think that Maya was thinking "I can't believe you brought him home!  This is so fun!"

 

 And a few other random shots from this week.

First walk in the stroller

Just hanging out

 



 

And the final picture in my series of pregnancy shots.  This picture was taken on Will's due date---I would have been exactly 40 weeks pregnant . . . instead he is 5 days old.

 

 

The Final Countdown

Last night I commented to Dave about how crazy the past few weeks have been.  The bus drama at school, some sick family members, and the impending birth of the baby have all come together to create a bit of chaos over here.  Dave said "The past few weeks were crazy?  What about the summer?" I thought back to the genetics results, the app lawsuit and removal from iTunes, the hospital trip for my breathing issues right before I flew out for the ISAAC conference . . . the list continues on.  It's been a busy season, for sure.

 

In the past 24 hours (literally) things have started to come together a little bit.  The bus situation is resolved, finally.  Maya rode the bus both ways today, with the same pick-up and drop-off times as last year. She was a bit wiped out, but happy. 

 

And really, the resolution has arrived just in time . . . because her brother is going to arrive on Friday.

 

!!!

 

This next two paragraphs includes the words "placenta" and "dilation."  If these are too detailed for you, skip ahead.

 

When I was pregnant with Maya, I never went into labor.  They suspected that she might be small (she turned out to be totally average) and so I was having weekly ultrasounds from 36 weeks on.  They decided that I could go 1 week overdue if I wanted to (which I did) and then they would have to induce (which they did).  When Maya was born, we could see that the placenta (while still being functional) was showing aging along one side, and we were glad that we induced when we did instead of waiting longer.

 

Because of the aging placenta thing (and the fact that I'm not having those weekly scans this time to assess the function of the placenta), and the fact that this baby seems to be trending on the larger side, my doctor decided that I shouldn't go past my due date.  He offered me two possible induction dates if I didn't go into labor spontaneously, and we decided on this Friday.  I'm hoping that this induction will be a bit faster, since my body seems to be inching it's way naturally a bit (some contractions, some dilation--- neither of which happened with Maya until I was a few hours into the induction).

 

So, here's to Friday :)

 

And now, belly progress pictures.  I took a bunch of belly pictures but never really got around to posting them.  It's funny, I remember thinking so early on that I looked really pregnant right away.  Now I look back at the 11 week picture and think about how I can't wait to shrink back down to only looking 1 trimester pregnant.  So, from the start to the end(ish):

 

January 23, 2012

 

 

11 weeks, 4 days

13 weeks, 4 days

16 weeks

18 weeks, 4 days

 

21 weeks, 5 days

26 weeks

 

 31 weeks

 

34 weeks

36 weeks

38 weeks (one week ago)

 

 

How do you know that she's funny?

Between the Speak for Yourself case, the genetics stuff, and AAC/assistive technology stuff, I've spoken with a bizarre number of reporters in the past few months.  Talking with press people is not something that I enjoy, because I'm actually a pretty private person.  I know, that might not make much sense, considering that I blog and share my thoughts and pictures and whatever---but here, I control the information.  If there's something that I'm not ready to talk about, I wait a few months.  I get to paint experiences the way that I see them, rather than just answering questions and hoping that someone else sees our reality the same way that I do.  They also ask some weird questions.

Recently I was speaking to a reporter (and I honestly can't remember who it was or where they were from) who asked me to tell her a bit about Maya.  I gave my standard Maya adjectives: she is stubborn, sneaky, and really funny.  As a follow-up question she asked, "If she can't talk, how can you tell that she's funny?"

Slightly abrasive phrasing aside, I understood what she meant.  It must be hard for people with talking kids to understand how we are able to know so much about her, and understand her fairly well, with almost no spoken words.  Being able to talk offers a kind of laziness, I think.  It's so easy to communicate that you drop off on the other nonverbal observations that you would otherwise be hyper-in-tune to.  I can see the exact second that Maya's eyes start to glint mischieviously, and I know that something funny (or naughty, or both) is coming.

One of her favorite jokes right now is about brushing her teeth.  Each night Dave gets her dressed for bed, gives her medicine, etc., and then I come to brush her teeth.  She used to call me when they were ready . . . Mama!  One night she said Daddy instead of Mama and started to laugh and laugh. Dave and I acted very offended and tickled her and she thought it was the best joke ever.  Now every night he says "Call Mommy to brush your teeth" and she yells, through hysterical laugher, Daddy!  This kid cracks me up.

Two days ago she was eating breakfast and babbling on the talker (she turns all of the words on and just moves through the screens exploring, so what she's "saying" doesn't really make sense, but she learns where new words are).  I was doing some dishes and packing her lunch, when suddenly I heard "Fuzzy Navel" . . . which, of course, caused me to burst out laughing.  You don't expect to hear a cocktail order from your 4 yr old before school on a random Wednesday.  When she saw me laugh and realized that she had done something funny, she laughed, and then said: Fuzzy Navel. Funny. Fuzzy Navel. Fuzzy Navel."

So then I had to write a note to the new teacher explaining why my child might come to school saying "fuzzy navel" all day.

(We didn't program that in, by the way.  It's one of the 11,000 words that's pre-programmed.)

Here she was last night after dinner.  She's clearly a bit tired, but has turned all of her words on and is exploring.  Dave and I were both in the kitchen, when she decided to try to make us laugh. (Don't turn your volume up too loud, I get a little supersonic and don't want to blast your ears out)




I don't know, it seems pretty easy to me to tell that she's funny, regardless of whether she can talk or not . . . don't you think?

   

The start of the school and a busload of problems

Maya is back at school and loving it!

Well, mostly.

School started last Thursday.  On Tuesday I called the new bus company and found out that her pick-up time was 2 hours before school started.  Yikes.  They seemed confident that the route would change.  I called the bus company back on Wednesday, realizing that they hadn't told me Maya's route number . . . and this time they told me that we had been deleted from the system and had no bussing.  So then I called the school, who told me that we definitely had bussing.  Ty also were confident that major changes were going to be made, as many of the routes seemed to criss cross around the city.  I learned that rather than letting the bus companies handling the routing, the DOE had taken over the process.  Of course . . . that makes total sense. 

We decided to drive Maya on Thursday & Friday, after hearing that the buses would likely be re-routed over the weekend.    Here are a few first day pics:

Double-checking her backpack while we waited in the lobby

As soon as she hit her new classroom she ran right to the garage toy, pulled out the buses, and started driving them around.  Poor kid is having some bus withdrawal.

 



Thursday and Friday afternoon brought some major meltdowns as Maya was desperate to get on the bus rather than having to go in the car with me.  She didn't care that I was trying to rescue her from the 2.5 hour trip home (yep, seriously) . . . she wanted the BUS.  We heard that the buses were being re-routed over the weekend and the trips on Monday should be more smooth, so we psyched her up, saying "Your bus isn't ready yet, but it will come on Monday!"

All weekend, we talked about the bus. This morning we marched outside and waited.  And waited.  And waited.  The waiting didn't bother me much, because I kept thinking good--this means our new pick-up time is later-that's great news!  But after 90 minutes we gave up and headed into the school in the car (Maya was bribed with chocolate milk and a movie . . . by that point she was tired of waiting, too).  I dropped her off at school only to learn that the buses weren't there, the routes still seemed to be a mess, and maybe I should come back for her this afternoon? 

And so . . .instead of working or nesting or doing much of anything productive, I'm getting ready to drive back into the city and pick up a very angry 4 yr old who will rage against getting in my car.  I'm so bummed that we told her she would be on the bus today and have to break our word. I'm thinking it will be an ice cream afternoon. 

(This is a big, bad city-wide issue right now, with several stories appearing in the paper and on the radio about the obscenely long routes for these preschoolers.  I can only hope that hopefully that means it will be dealt with more quickly.)

There's a silver lining, though.

Bus aside, the school year is off to a great start.  Maya loves her new class, which is a bit larger and has less adult helpers . . . I was a little bit nervous about the transition, but she's doing great.  I thought that she might try to run away to her old class, but she hasn't---an aide even took her there to visit and say hi, and she left without a peep when it was time to go.

The new teacher and new speech therapist seem great, interested, caring, and open to learning all about her talker and how to incorporate it.  (Whew!)   When the important stuff is going so well, it's hard to lose (too much) sleep over something like the bus.  I sure hope that they get this squared away soon, though.  You know, like before this baby is arriving.

AAC homeschooling: Princesses teach -ing verbs

First, let me say that the title is both accurate and tongue-in-cheek.  Maya learns most (as in over 99%) of her AAC use with me at home . . . but that's where our "homeschooling" ends, as she is in full time preschool.  Second, let me preface this by saying I am not an SLP or AAC therapist, so I'm likely making some mistakes here.  (I do consult via email, Twitter, and phone with AAC folks and read everything I can get my hands on, so the stuff that I try out isn't random, but it's not perfect, either.)  If you are an SLP/ATP please feel free to comment with tips & tricks.


Since ISAAC, I've been thinking a lot about Maya and the talker. I would like her to become more independent with it, able to form different types of sentences (besides the "I want xyz please " that she has mastered), to comment on life, to ask questions, etc.  Perhaps the most important thing to do with a kid who uses AAC is to model, model, model speaking with their device (like I say "I like waffles" and tap it on the talker at the same time) . . . but I've been realizing that this isn't enough.  If I want to have a shot at closing the gap between Maya's receptive language (what she understands---seemingly everything) and her expressive language (what she can say, via words or device or whatever), I'm going to need to really target some skills and teach them, through little activities and lessons.

So I've spent about a week reading about typical language development, and then about language development in AAC users.  Then I read about core words and sight words and the most commonly used words in conversation by preschoolers and school aged children.  I had a list of possible things to target (which was way too long) and a list of questions (which was way, way too long).  Some slight harassing of therapists via email and Twitter, combined with a long phone call from one of my favorite AAC specialists, and I felt like I had narrowed things down.

Where to start?  For today, I went with -ing verbs. 

Maya has only had infinitive verbs open on her talker so far (eat, make, help, listen).  I learned that the next verb form that kids typically incorporate in their speech is the -ing (eating, making, helping, listening).  I thought of ways that we could easily use this in conversation and apply it to life (some listed at the bottom of the post), so it seemed to make sense to target. 

And I knew just who could help me---the princesses.  Because Maya *loves* the princesses.

So last night I made flashcards with the princesses doing different things.  (Thanks, Google images.)  I wrote the verbs on the back, but if I were going to re-do this I would probably write them smaller or leave them off, because I've also been thinking about how these cards could be used for a lot of different things.  (Shout-out to my awesome husband for teaching me how to print pictures on index cards, saving me cutting & gluing time.)

 

 

Today Maya & I sat together to make a princess book using these cards.  Here's what we did:

 

1. We selected a princess card, looked at it together, and talked about what the princess is doing on each page.  (The next time that we do this I will likely model "What is she doing" for each page, but I didn't want to overwhelm her this time around)

 

2. I would write the sentence "Princess is xxx-ing" and model it with the talker. 

 

3. Maya would "read" the sentence with the talker.  This required various degrees of prompting, which I expected because these words were new to her.  The hope is that over time I can fade the degree of support that she needs.

 

4. We tape down the card and move on.

 

She had a great time and was really excited about the cards :)  The book making was fun and easy, and since the book will likely be destroyed by bedtime we can start over anew next time!  Here are some pictures:

 

At the end, checking out her book and extra cards

I wanted to take a picture of the book but she wouldn't hand it over.

This was the best I could do.

 

Here's a video.  A few things: ignore the chaos in the apartment, as I've mentioned we're painting and re-arranging and stuff is everywhere. Also, sorry for the weird angles---it's difficult to figure out how to tape an activity when I need to be in it as well.  This video gives you the start of the activity, the making of two pages (from across the table and also showing Maya on the device) and the ending as well.  It's on the longer side (but still less than 5:00), but I thought that seeing more is better than seeing less if you're trying to replicate things at home. 

 

 If you can't see the video above, here's a direct link: http://youtu.be/TCUUzbLi26w

 

Ways that we can incoporate & reinforce -ing verbs:

• ask Maya what she is doing so that she can answer "I am xxx-ing"
• model by describing what we are doing "I am cooking" "Daddy is writing" "Parker is sleeping"
• describe what other people/animals are doing on tv shows (if you have DVR and can pause it, that would work really well) "Elmo is dancing"
• describe what other people/animals are doing in books "Maisy is walking"

I'm also hoping to make the leap to pronouns in the near future, and I'm thinking about how he & she will be helpful for this.  I could make cards with some boys on them (princes? pictures of daddy/grandpas/her cousins) and shuffle them into the princesses and then she could pick between "he" and "she."  But we're not there yet.

Would these princess cards be helpful to you?  If you send me an email (uncommonfeedback@gmail.com)  I'd be happy to email back the word document with these images, which is formatted to print onto 3x5 index cards.

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. 

  

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

 

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.

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.