Wednesday, October 31, 2012

Happy Halloween, 2012

Halloween 2012, in pictures: 

We went trick-or-treating with a big group of neighborhood kids, and Maya totally held her own---and was ecstatic!

PS--If you've been with us since 2008 (basically, if you're my mom) you might recognize Will's giraffe costume as Maya's first Halloween costume :)

Monday, October 29, 2012

The Power (literally) To Talk

Right now I'm sitting at our table, a sleeping Will on a blanket nearby, while Dave & Maya play with neighbors in our building.  No one has school, as Hurricane Sandy is bearing down on the area---wind is howling past the windows as I type.  Like many in the Northeast, we've taken some precautions to prepare over the past few days . . .

In case of damage to water lines, we've got plenty of water.  The bathtub is full, pots are full, and we've got a case of water. We've got flashlights and candles.  We have ice ready in case we lose power and need to put stuff in a cooler.  We have shelf-stable food.  We have matches to light the gas stove with in case the power is out.  The cars have gas---handy in case power is out and we need to charge up the cell phones.  Electronics are charged.  We have a landline and a battery powered radio.  We've got medicines, diapers, wipes, etc.

We're definitely all set----odds are, we are way over-prepared.  Even if stores weren't able to open for a while, we'd be ok. But that's fine by me . . . that means that we can relax, drink coffee, watch tv, and rest assured that we're fine, no matter what happens here.  (Fortunately, we're not in a flood zone, so no need to evacuate or anything.)

As we prepared for the storm, I thought about how lucky we were to fall into the group of people who would be inconvienced by the storm, rather than the group that would be in serious need or even endangered

My family is all together under one roof, safe and secure.

We have plenty of tap water, and don't need bottled water for formula because Will is nursing. 

We don't have any dietary concerns that require special foods or formulas, so refrigeration is nice, but not necessary. 

We don't have special needs that require equipment that might need to be powered or charged. 

Oh. Wait.


While perhaps not medically necessary (like, say, an apnea monitor), Maya's talker is certainly necessary.

The talker and its case are fully charged.  Maya's vocabulary file for her app has been backed up and loaded into our back-up iPad.  We have a car charger for the iPad, so we could charge it in the car if we needed to, but that won't work for the case---so we would have to take the iPad out of the case if the battery in the case dies (because otherwise there would be no sound).

The talker is as storm-ready as it could be.  But it got me thinking again, about how things sometimes feel so unfair. I mean, plenty of people get annoyed when the power is out simply because things get more boring---no tv, no internet, no movies, etc.  But for Maya, a prolonged power outtage could mean no voice.  If the talker died, and we couldn't charge it, I imagine that Maya would be equal parts confused and frustrated, and justifiably so. 

I thought that the hard part of adjusting to using AAC would be the education needed to learn the system.  I had to learn it, Maya has to learn it, we need to model and practice and reinforce.   But the reality is that relying on an AAC device is no small feat---and it's not just because it takes work to use the system, but also because it takes work to maintain it.  I've gotten used to carrying the talker around with us, despite the fact that it's heavy and cumbersome, not something you could easily pop into a bag. Dave & I remember to charge it at night after Maya is sleeping, lest she be left accidentally mute from an unforeseen battery drain.  And now we've seen that preparing for emergency situations means preparing the talker as well. 

Safe thoughts to all of those in Sandy's path.

Wednesday, October 24, 2012

Two Roads Diverged

The differences in the first 10 minutes of Maya’s life and the first 10 minutes of Will’s life were enough for me to cautiously note, even in my post-delivery haze, that it seemed like our kids might have markedly different paths. While I had already spent time thinking about the differences that we would encounter as parents of both Maya and a child (possibly) without the extra challenges that she faces, I did not realize that the differences would be immediate . . . literally from the first moment of life.

Will cried when he was born, loudly and steadily, continuing as the nurse toweled him off and looked him over. I sat in the delivery bed and watched him from across the room, arms flailing and incensed, his cries declaring “I am angry and I am strong” and to me they carried the subtext “I’m different, this is different, from the very first moment.” I thought back four and a half years to Maya’s first moments, punctuated by only a small cry before she was quickly carried into another room for some suctioning and examining.  With Maya, residents had questions for us immediately about prenatal screening and the spacing of her eyes . . . with Will, a nurse cleaned him up and handed him over to me, and that was that.
Angry, yelling Will

I held Will and Dave held Will and we took pictures and soaked in the awesomeness of a brand new person.  I knew that a test was coming, and I was hesitant to put Will up to his first evaluation . . . would he be able to nurse?  When Maya was born I didn’t know that the ability to feed is really the first unspoken milestone that a baby hits, ideally at birth . . . but now I knew that feeding was a kind of developmental test, and I almost didn’t want to know whether he would pass. 

Maya had done the cutest little thing, right from birth-she sucked on her tongue.  She liked to stick her tiny tongue out and she liked to move it all around—I had never seen another baby do that, and I was still blissfully na├»ve . . . seeing her do something totally novel had me thinking “that isn’t typical--she has a little unique personality already!” instead of “hmm, that isn’t typical, maybe it’s a sign that something isn’t right.”  I didn’t know that something may have been amiss. I just thought she had character.

Maya, and her little tongue, getting ready to leave the hospital

She couldn’t latch on to nurse, and when she was 1 day old a nurse came to teach me how to cup feed her.  Cup feed. A one day old baby.  They put some formula into a little medicine cup and showed me how to hold her up and dribble drops of the formula into her mouth.  This was exactly as crazy as it sounds.  Little streams of formula ran out of her tiny mouth. She coughed and sputtered and I worried that I was drowning her (she already needed regular suctioning, still congested from birth, and now she was choking on formula that I clumsily poured into her mouth).  As Dave slept at home that second night (we didn’t have a private room, so he was kicked out overnight) I became increasingly frazzled with each cup feeding.  The thought of bringing Maya home with a little stack of medicine cups and my breast pump was terrifying. I didn’t know how this would be sustainable.  It certainly didn’t feel sustainable.

When the pediatrician arrived in the morning to examine and discharge Maya and asked, “How is she doing with eating?” I unraveled, tearfully confesssing that I didn’t know if I was good enough at the cup feeding to take her home.  The doctor seemed puzzled and asked why we hadn’t tried a bottle, and I replied, wide-eyed, “They didn’t say we could use a bottle. I thought that we couldn't use one  because she couldn’t latch.” (I later learned that because NY state is (was?) so pro-breastfeeding, they push cups instead of bottles for babies whose mothers intend to nurse.  What a freaking mess.  If I had known then what I know now, I could have avoided a lot of stress in the hospital by demanding a bottle right away.)  She called a nurse immediately, had a bottle brought in, and together we figured out a way to get Maya to latch on to the bottle (it wasn’t easy and required some maneuvering, but it worked).  For the first few days, Dave and I were the only people to feed her, as we had mastered the “how to get the bottle in” technique.  I didn’t know that it shouldn’t be so hard . . . I thought it was just a tricky newborn quirk, and I thought that after a few days she would outgrow it.

Once at home, we started a crazy schedule of pumping and bottle feeding.  In the early days I would pump every 1.5-2 hours, round the clock.  Between pumping and bottle-feeding Maya, little else got done.  The silver lining was that Dave could help.  There were many nights when he fed and took care of Maya, and I just pumped and slept and pumped and slept. I developed a system for the pumped milk, rows of bottles and bags accumulating in the fridge and freezer.  I was proud of having an organized system . . . I didn’t know that it shouldn’t have to be so complicated.  I didn’t know how much easier nursing, or bottle-feeding formula, would have been.  (Not that I would have changed my choice, I simply just didn’t understand that we were dealing with layers of complication that weren’t typical.)  Physically, the pumping was hard to get used to . . . I’ll spare you the details, but there were several painful side effects of pumping that took a few weeks to heal.  I didn’t know that nursing would have been less painful (not pain-free, exactly, but much, much easier initially). 

And now, here was Will.  Less than an hour old, wide-eyed in the same way that Maya had been after her birth, small and swaddled in my arms as I sat in my labor and delivery bed.  Dave and I had each snuggled him and taken pictures, and I was ready to try nursing, to find out whether we would be facing some of the same feeding struggles or whether we would be embarking on a different path.  It took him about 3 seconds to latch and start feeding.

Two roads diverged. Instantly.

We've already taken the road less traveled by.  As it turns out, the road more traveled is pretty nice, too.

These first few weeks with Will have been lovely in the same way that the first few weeks with Maya were.  Baby baths, a warm little pile of baby in the crook of an arm, sleepy gassy smiles, tiny hats and stretchy outfits.  The sweetness of something new.  And it’s a good thing they were both so cute, because these initial weeks have been exhausting, too.  This morning Will went to sleep five minutes before Maya had to get up for school. I think they’re tag-teaming already.

Will wins the prize for easiness, though.  Take away the constant pumping that I did with Maya, and life is a lot simpler.  When he wakes up hungry, I pick him up, sit down, and feed him.  It's that easy.  We took the kids to the zoo when Will was 8 days old, and all that I had to bring to feed him was my nursing cover.  With Maya, we would have needed the cooler bag of pumped milk, the instant hot pack for heating it up, and clean, empty bottles.  If we wanted to stay for more than an hour (plus travel time) I would have had to bring the big pump bag---but I wouldn’t have done that in the first week, it would have been too overwhelming.  So it just wouldn’t have happened.

I also don’t worry about Will as much . . . or at least not in the same way.  Despite the insistence of everyone before we left the hospital with Maya that she was fine, a seed had been planted that maybe-something-could-possibly-be-atypical-maybe-but-probably-not-no-definitely-not-well-maybe.  Something about some of her little features. My crazy post-partum brain spent a good chunk of the first week studying her and wondering if everything was really ok. (Hindsight being 20/20 and all, I now know that I wasn’t really crazy, I was on to something . . . but I gladly let myself be convinced otherwise.)

With Will, things are “normal” . . . for now , anyway, and I will soak up the easiness of every moment of normal that we get.  (Seriously, I’ve had so many moments of “holy cow, this is so easy” already, and I know that there will be many more to come.)  But I know, all too well, that things can change in an instant, and I don’t take a single normal, typical day for granted. Right now the only thing expected of him is eating well and sleeping poorly, and he does both of those like they are his job.  Right now, he’s on the road more traveled, the typical path of a typical baby  . . . and he’s taken us further down this road than we were able to go with Maya.  It’s nice to get a look at it.

The beauty of being a seasoned traveler of the road less traveled is that I don’t have the same fear of that path that I did several years ago. We’ve traveled that road for years now, and I know that it’s bumpy and hard to navigate, but beautiful and unique and rewarding.  So whether we stay on this road with Will, or whether he veers to another course, I have the peace of knowing that things will be just fine.  Our little family will be happy travelers, safe with each other’s company, no matter which roads we each end up traveling on.


Thursday, October 11, 2012

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.



Sunday, October 7, 2012

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.