Maya could be a lot of things . . .

Last night I was going through pictures, and I couldn't help but notice the many talents of Maya.  Below are some highlights, presented superlative-style:

Most Precocious Chopstick Handler (she can even work them in her sleep!)

 Most Likely to Eat a Scrabble Tile Mid-Game

 Most Cheerful Post-Op Patient

Cutest Easter Bunny

Avid Food Enthusiast

Most Daring Aquatic Gymnast

 

Most Determined

Most Proud (and rightfully so)

Most Adoring Pet Owner

Some of the pictures gave me insight as to Maya's bright future, and the many ways it could go . . .

She could be a reowned chef . . .

or a brilliant herpetologist . . .

or a wildlife wrangler . . .

 or an arctic explorer.

Well, those are all possibilities.  But one thing's for sure . . .

 she's going to be the sweetest big sister :)

And I think she's happy about it.

Dave, Maya & I are ecstatic to present to you . . . baby #2, scheduled to arrive on or around October 3rd :)

   

PRC & SCS vs. Speak for Yourself, links round-up

Author's note:  I'll continue to update stories as I can.  The articles with ** next to them are the most recently added articles.

In the few days since my last post went up there has been a suprising (well, to me --- I guess not to people in the know) response.  I expected to possibly hear from two groups: those in the special needs community (parents, therapists, bloggers) and those in the speech/assistive tech/AAC community.  Remarkably, those groups (especially the latter) have been relatively quiet.  (With regard to the AAC community especially, I get the walls-have-eyes feeling . . . I think a lot of people are chosing the watch-and-wait approach.  Which is perfectly fine, of course.)

What I didn't expect what the tidal wave* of sudden traffic from a third group: the tech community.  Being a very non-technological girl myself (I still often can't get two pictures side-by-side on the blog without some sort of formatting error) I was totally unaware of the tech blogs/boards/news sites until now.  Here's what I've learned: tech people tend to not like broad software patents.  Also, some of them have a lot to say on this matter.  Also, I can't understand a lot of what they say, which includes terms like jailbreak, open source, and prior art. (But I'm learning.)

I'm going to list some links below, places that this story has traveled . . . but with a few warnings.  First, I'll let you know which ones are articles and which ones are discussion-board style posts--some of which are very technical.  Second, and this is a big one, please realize that these are tech folks, not special needs folks.  Some of the comments could seem hurtful (along the lines of Well, there is a device out there, it's just $7,000 and the parents don't want to pony up the money or It seems like they should see a doctor and help the girl learn how to speak properly) . . . please realize that they are not hurtful to us.  They are just misinformed----frankly, in the same way that I would be misinformed if I tried to jump into a conversation on "prior art" (which actually has nothing to do with art, in case you were wondering).

If you decide to go check out the links, particularly the ones to the tech boards, please don't worry about trying to defend us.  We are perfectly content without being defended, and seriously, our feelings aren't hurt.  The differences between a specific AAC device and an app can be multi-layered and tricky to explain, and assuming that we just wanted the cheaper one (as opposed to the more fitting one) is a logical assumption.  Incorrect, of course, but logical.  And trying to explain undiagnosedness. . . well, I've encountered doctors who intially seem skeptical, so it doesn't phase me at all that non-medical, non-SN folks might have trouble wrapping their brains around it.

Without further ado:

Articles in the US:
A Little Girl Finds Her Voice Thanks to Threatened New iPad App (from TIME.com) This is the most comprehensive, balanced, fair article I've seen.  Plus, it has a super cute picture of Maya.

The Iceman Cometh, with his Legal Team (from supportforspecialneeds.com)  Robert Rummel-Hudson's perspective on the lawsuit, very interesting particularly because his daughter, Schuyler, has communicated with a device from PRC for the past 7 years. 

Patents Threaten to Silence a Little Girl, Literally (from techdirt.com)  (My favorite part of this one is that people keep misreading the title-here and on another site- as "parents" instead of "patents."  Well, that would change everything, wouldn't it?)

Patent Dispute Threatens to Silence 3-Year-Old  (from webpronews.com)

Who owns the tech to talk?  The human toll of patent warfare (from digitaltrends.com)




How Tech Patents Hurt Real People (from pcworld.com)

Patent Dispute Threatens to Silence 3-Year-Old (from O-I newswire)


Patent lawsuit threatens inexpensive iPad app to let autistic speak (from teleread.com)

On David A. Wheeler's Blog


**Parent Draws Attention to Patent War Over Communication App (on About.com's Children with Special Needs page)

**Patent lawsuit threatens inexpensive iPad app to let autistic speak (on TeleRead.com)


International:
In Russia: "Patent owners want to deprive the little girl voice"  (from habrahabr.ru) There's clearly some stuff lost in translation here, and I can't tell which stuff was misunderstood and which stuff just might translate to English poorly. The comments definitely don't translate well, although reading things like "hooligans of rob!" and "what is jaundice" made me smile this morning. Also, it makes me worry that when google auto-translates my blog I might sound like an idiot.

In France: "Patents: choose between copyright and the silence of a little girl" (from zdnet.fr)  Again, not perfectly translated.

In Scotland: "Software patent threatens disabled child" 

**From a Romanian blog: Software patents and their harmful (that title may not have translated correctly)

Other stuff (these conversations tend to be more technical in nature):
On Slashdot
On OSnews
On Reddit
On Metafilter


*By tidal wave, I mean that we've had over 37,000 hits since that post went up.  That's way more traffic than I typically get in a few days.

Goliath v. David, AAC style

Last week a large, profitable company sued a small start-up business for patent infringement.  As a non-legal person, I can only guess that this sort of thing must happen fairly often.  I would also guess that the large companies, which have the means to hire crackerjack legal teams and drag cases out, must often win.  And while I guess I feel bad for the small businesses, I’ve never really cared before now.
Because this time, the stakes are high.

This time, it’s my daughter’s voice on the line.  Literally.

My daughter, Maya, will turn four in May and she can’t speak.  The only word that she can consistently say with 100% clarity is “done”—which, while helpful, isn’t really enough to functionally communicate.   When Maya was two and a half we introduced her to the iPad, and we’ve danced with AAC (augmentative and alternative communication) ever since.  We experimented with a few communication apps, but nothing was a perfect fit.  After an extensive search for the perfect app, we found it:  Speak for Yourself.   Simple and brilliant, we saw that it had the potential to serve Maya into adulthood, but was also simple enough for her to start using immediately. 

And she liked it.  And it worked.  And I started to have little flashes of the future, in which she could rapidly tap out phrases and ideas and tell me more and more of the secret thoughts that fill her head—the ones that I’m hungry to hear and she’s dying to share but her uncooperative mouth just can’t get out. 

My kid is learning how to “talk.”  It’s breathtaking.

But now Speak for Yourself in under fire, and from a surprising (to an AAC outsider) or not-so-surprising (to an AAC insider) source.  They’re being sued by Semantic Compaction Systems and Prentke Romich Company, big names in the AAC world.  SCS and PRC allege that Speak for Yourself is infringing on their patents.  I’m going to be honest: I don’t know about patents and infringement, and I’m not going to get into debates about the legal merits of the case, because that’s a conversation in which I would quickly drown. 

And if you were in my shoes, you would see that the legal part isn’t the part that matters.

Here’s what matters:  It’s a very logical assumption (confirmed by the AAC professionals that I’ve spoken with) that if SCS/PRC win this lawsuit, they will eliminate Speak for Yourself, the app that my 3 year old is working her damnedest to learn. 

They will remove it from the market.  It will disappear.   They have no reason to keep it alive and one giant reason to kill it . . . money.   PRC can make around $9,000 by selling one of their communication devices, and only a few hundred per iPad app.  Hardware profits annihilate software profits.

Lest you think that I’m unfairly anti-communication device or pro-app, I point you to this post, in which I declared that an iPad app wouldn’t be good enough for Maya, that I was determined only a full communication device would serve her properly.  Shortly after writing that post we met with reps from PRC and Dynavox to explore their devices.  We were disappointed to see that the devices were too big (both literally and figuratively) for Maya.   It was clear that in a few years PRC’s device would fit, but I didn’t want to wait.  I sent emails out (to users, AAC experts, and company reps) asking about whether PRC was developing an app for the iPad, and the answer was a clear no.   

I went on to learn that customers have been requesting an app for quite some time from PRC, but they seem to have no interest in joining the iPad market, much to the dismay of the users.  And why not?  Why not make an app that could be used by some of their nonverbal consumers?  Why not create a more affordable alternative to the large devices, something that could conceivably bring a voice to many, many more nonverbal children and adults?  I want to think that it’s not just about the money . . . but it seems to clearly be just about the money.

Interestingly, PRC’s mission statement starts with “We Believe Everyone Deserves A Voice.”  Perhaps “We Believe Everyone Who Purchases Our Devices Deserves A Voice” or “We Believe Everyone Except Those Needing An Affordable App Deserves a Voice” might be more appropriate alternatives.

Speak for Yourself is a clever, unique app that presents thousands of words in a simple, accessible way.  It’s unlike anything that I’ve seen, and I’ve seen a lot.  The creators are speech therapists and AAC specialists, and they have been helpful and supportive and enthusiastic when I’ve reached out to them.   They seem to be sincerely invested in helping new users learn and use the app, and have been excited when I’ve emailed them about our little successes.  They seem to embrace “everyone deserves a voice” in a much more legitimate way than the plantiff in this case does.  (And I don’t work for them, by the way, I just believe in their product and what it can do for kids like Maya.)

Is it possible that SCS/PRC could win this case and keep the Speak for Yourself app alive? Yes . . . but not likely.  Is it possible that SCS/PRC could win this case, kill Speak for Yourself, and replace it with their own iPad app?  Yes . . . but not likely.  Is it possible that SCS/PRC could lose this case, that Speak for Yourself will win and the playing field will be leveled in a kind of amazing way? Yes.  Yes it is.  And boy, am I hopeful.

For my daughter, the bottom line isn’t about what happens in the courtroom, it’s about what happens to her app.   Her iPad, equipped with its special case and Speak for Yourself, is now her communication device.  She doesn’t care about who is making the money, or patent law, or big guys vs. little guys . . . she cares about being able to tell me that she wants milk instead of water, or she wants to go to the zoo, or about who she played with at school.

She wants to be able to talk. 

And shame on you, PRC, for threatening to take away the closest thing that she’s ever had to a voice. 

Maya, proudly holding her "talker"

  

 

 

Author's note: If you're interested in more responses to this story, please see this post, which links the articles and responses that have been published on other sites. 

Maya is self-directed (and not in a Woody Allen way)

Last week I found myself sitting in the principal's office.  Of Maya's school.  Because she's acting naughty.

(sigh)

Well, not naughty exactly.  Manipulative. Stubborn. Flightly. Indifferent.  (Those are all my words.)  In preschool language, she is what you would call self-directed, which kind of sounds like a nice thing.  She knows what she would like to do, and will go do it.  Issues arise, however, when her plan doesn't line up with her class's plan.  They're supposed to walk down the hall and she doesn't want to?  Well, maybe she'll just have a seat in the hallway.  She's supposed to practice climbing stairs in physical therapy, and that's not her idea of a good time?  Perhaps she'll just go all limp-noodle on the poor therapist.  She has to take sips from a cup before getting her water bottle?  Well, that's fine, she just won't drink at all, then.

I mentioned these issues last week (after speaking with her teacher) but I was kind of startled by the chat with the principal.  I mean, it's the principal, you know? 

I guess I shouldn't be surprised by this, as I have a killer stubborn streak.  I was always very compliant and pleasant at school, though, and while Maya has a handle on pleasant, the compliance isn't following along.

Interestingly, through the conversations with the teacher, therapists, and principal, I realized that Maya is more obedient at home than she is at school.  I have some theories as to why this is: there are less distractions at home, for one.  Secondly, she only deals with two adults at home, and our expectations have been clear for years.  At school there are many adults (regular teacher, music teacher, 4 therapists, 5 one-on-ones that rotate, depending on the day, the administration, etc). Maya is sly-if one person handles her slightly differently than the others, she will keep wiggling and pushing and looking for ways to get around rules.  Add to all of this the fact that she's cutting a molar and her sleep hasn't been great since the big girl bed switch, and we've got a smorsgabord of possible causes for her recent increase in semi-defiant behavior.

But that doesn't make it ok.

So we're taking some steps.  And, in case anyone else out there is in need of some pro-compliance activities (it can't just be us, right?) here's what we've got going on:

1. For the cup drinking (or, really, and targeted skill that your child is fighting):  I dug into the blog archives (they can be handy) and re-discovered this chart.  Maya's teacher modified it for drinking from the cup (the pictures are now drinking instead of eating, and the star is the same).  She has to take a certain number of sips from the cup before she gets the star--in this case, the water bottle.  It's working well.

2. For general lolligagging:  We got the Time Timer.  She doesn't fully understand it yet, but I can see a million uses for it.  For example, when she is refusing to take off her coat I can just set it for three minutes.  If her coat isn't off before it beeps, then I'll do something.  What?  Um . . .  I'm not sure yet.  Maybe put her bag of stickers in time out.  She loves her stickers.

3. For combatting total self-directed-ness: I'm going to be choosing some of our activities each afternoon.  The timer is going to help me out by showing her that there is a limit to my activity choice, but we will do the full time before we move on.   My choices will be functional---OT and/or academic in nature.  We're referring to my time as "Learning Time."

Learning Time started today.  Over the weekend we had a session with an OT that I love (wish we could just have her come by a few times a week, but we don't have the funds).  Luckily, she loves us too, and we did a session in which she primarily trained me on a pre-writing program that I can do at home.  We did 4 minutes today (which she thought would be an appropriate jumping off point, attention-span wise).  When she got distracted (only twice) I paused the timer, and when we were done I felt super accomplished--and Maya was proud, too :)

If you're thinking that you don't have a pre-writing program to try, don't worry.  I emailed the teacher explaining my Learning Time plan and she was all for it.  I asked her to keep an eye out for skills that I would be able to help reinforce at home and she's already sent me one idea.  Between your child's therapists, teacher(s), and Pinterest*, there are a million fun projects to do.

There are probably people who think "Eesh---therapy and academic stuff should be left for the therapists and teachers."  I just don't feel like that's the case for us.  I came away from today really enjoying the (tiny) session we had, working on a goal together, and Maya really liked it, too.  And since we can't afford unlimited therapy, and I feel like I'm smart and capable, I'm glad to jump in and fill some of those gaps.

If you've got any other tips or tricks, feel free to share them in the comments . . .


*FYI, I've heard that Pinterest is full of ideas.  I still haven't figured out Pinterest.
 

Necessity is the mother of invention (possible solution for iPad accidental hits)

It's been a few months now since we started using Speak for Yourself on the iPad for communication.  Maya loves it, and will nod vigorously if you ask her if she needs "the talker."  There's only one flaw to the app (and it's not just limited to this app)---accidental button pushes.  Often Maya will be reaching to touch something with her index finger, but her palm and other fingers foil her plan by bumping into the screen and hitting other buttons.  She accidentally says words, moves through screens, and closes apps that she wasn't intending to. 

Here's a visual:

See?  My intention is to touch the green button, but my hand is bumping the screen at 3 other points, accidentally pushing things.

It's been holding her back.  She often seems to not understand how she ends up on a screen and will then just pick her favorite word to say out of the choices in front of her.  When left on her own she ends up saying things that sound like this: milk-princess-animal-Daddy-Daddy-alligator-purple-milk-cereal bar-orange.  She has a great time, but it's not as purposeful as it could be.

I've tried different things to help her with accuracy.*  Sometimes I put a finger under her wrist to hold it off the screen . . . but this doesn't work well because she gets angry that I'm interfering with her communication, and she grabs my hand and pushes it away defiantly.  I've tried holding on to her index finger to help her reach the button she's aiming for and tap it . . . but in a heartbreaking twist she's starting doing her own hand-over-hand---using her right hand to try to steady her left index finger and tap the screen.  Focused and adorable, yet somehow sad that she's trying so, so hard, and knows that she can't trust one hand on its own.

A few nights ago I had an idea, and today I finally tried it out.  It worked.  But I think it could be improved upon.  (Also, it's entirely possible--probably, even--- that other people are doing this.  I'm not claiming to have invented this idea, but I haven't seen it mentioned so I thought I'd share.)

Here's what you need: 

-a pair of gloves that fits your kid

-a pair of scissors.

Step One: Cut the index finger off of the gloves.

Ta-da!

She's not thumbless.  Her thumb is buddied up in the index finger slot.

The gloves won't activate the screen.  Adults in cold climates are all too familiar with this, as you can't use your touchscreen phone with gloves unless you have special gloves.  So the only part of her hand that can now effectiely touch a button is her index finger. 

 The three fingers that are currently on the screen can't hit any buttons.

Using her pointer finger to hit a button.

This is the best picture, because her knuckles and the heel of her hand are actually resting on the iPad, but not activating any buttons!  She's able to take the time to line up her index finger and hit the button that she is intending to. Success!

Pros:

1. It works.  (Only one pro, but it's the biggest one ever.)

Cons:

1. She has to keep it on.  She managed to for a while tonight, but then wanted to take it on and off. 

2. She has to not eat it.  She likes to chew on stuff, and I can see the glove becoming a target.

3. We will need several pairs.  These are going to get dirty and I'll need back-up pairs.

4. The material isn't ideal-it's thick and bulky.

If I could design the ideal glove, here's what it would be like:**

1. Thin, stretchy fabric: something like nylon?  It would be lighter, more smooth, and less fun to chew.

2. Index finger missing or reinforced with conductive thread (which works on touchscreens). (I think fingerless is easier for her at this stage, though.)

3. Toddler and child sizes available

Eventually, you would want to cut the thumb out too, for apps that involves stretching or pinching things (you know, that motion with the thumb and index finger)---but right now Maya needs to have as little activating surface area as possible showing.

It's not a perfect solution, but it's a start.

*The creators of SfY are working on a keyguard that will help to address the issue of accidental button hits, but I'm trying to come up with something in the meantime.

**If you have any ideas on how I can make better gloves at home, let me know.  I don't sew.  This is foreign to me.