My kid is nonverbal, we use an iPad, and I still didn't like that piece on 60 Minutes

Last night there was a piece on 60 Minutes that has everyone in the special needs community talking (or at least tweeting and posting on Facebook).  The segment, which can be viewed on their website, was about nonverbal kids who can use iPads to communicate.

Wait, no it wasn’t.

It was about kids with special needs, primarily nonverbal, who can use the iPads to communicate and for other educational purposes.

No, no.  That’s not quite right either.

Ok, for real this time.  It was called “Apps for Autism”.  And, frankly, that pitch had me annoyed before Lesley Stahl even began her introduction. 

Don’t get me wrong—I’ve got nothing but love for children with autism, and their families.  I’m sure that many of you reading this right now are a part of the autism community.  However, I think that “autism” also has a magical buzzword factor that “special needs” is lacking.  I would have greatly preferred a piece about “Apps for Special Needs” or how about just “Apps for Communication”?  “Apps for Special Education”?  “Apps for Communication, Motivation, Special Education, and then a Celebration”?  I mean, I’m just spitballing here, but if I could come up with those gems in less than a minute, I bet the good folks at CBS could have pitched a more inclusive, although possibly less buzzworthy, story.  It would have been appreciated by the throngs of parents, like myself, who have similarly adorable, nonverbal kids that don’t fall on the spectrum.

So, that  was annoyance #1.    Number 1?  Oh yes, there are more.

The first segment showed a young man named Josh (27 years old) using the app Proloquo2Go (P2G) on an iPad to answer Lesley Stahl’s interview questions.  (This is the app that we have for Maya, by the way, although she’s a bit too young to fully use it—it was pretty cool to see an adult move through it so quickly.)  P2G provided Josh with a voice—he could order food at a restaurant, he could answer interview questions, he could talk to his family.

What a fantastic gift.  Seriously.

But the annoyance #2 actually came right before the scene in which Josh was using the iPad.  The camera focused on Josh’s hand, pointing at letters on a laminated sheet of paper, and the voice over implied in the pre-iPad days, Josh’s only way to have a conversation was to spell out his thoughts, one letter at a time.  Lesley then says “For the past year Josh has been using an Apple iPad as his voice.”

Are we to believe that for 26 years, Josh has used only a (poorly) laminated paper keyboard, and then one day he got an iPad and it changed everything?

I damn well hope not.

If so, I am irate on his behalf.  I really, really hope that he was able to use PECs, or a ProgressiveCommunicator or a TextSpeak generator ---- clearly, he can spell, and these devices are all cheaper than the iPad.  Please, tell me he had something.  Even just a typewriter.

On the flip side, if he did have a device before the iPad (and I do believe he did---did you notice that the laminated paper was in QWERTY format?  This kind of implies keyboard use), then I ask----What’s the deal, 60 Minutes?  This seems like mighty questionable reporting.  I get it---you’re selling the iPad as "The Solution" (this segment directly followed a large piece on Steve Jobs, by the way).  But it seems like you’re heavily lying by omission, to say Josh had to fingerspell or act out his thoughts . . . until THE IPAD came to the rescue . . . when really, many of us who have nonverbal kids are raising an eyebrow and thinking “Really?  How can that be?”

Maya has an iPad, and I love it.  I look at it and I see potential—new apps roll out, and we can buy them and try them and see what works.  However, when she’s fully ready to use an AAC device, I want her to have a true communication device (like this one, from  Dynavox). Why?  Well, those devices are created by speech and linguistics people, fully mapped out and set up for grammar and communication (and really, I’m just repeating what my AT consultant told me.  I don’t know much about that stuff yet, because the time has not come for us). 

Mark my words, I am not an iPad hater.  I think the iPad has a place in education and in communication.  I think that nonverbal children should have early access to an array of items (from PECs to the devices that I mentioned above to iPads) so that their caregivers can find the best way to give each child a voice.  I am very, very grateful for our iPad.  But the way this piece touted the iPad as the tool for communication, counting, motivation, etc, was a little off-putting.  It seemed less like journalism, and more like a commercial.  

At the same time, I’m glad it ran.  I hope that the segment was able to show a large audience that nonverbal people are much, much smarter than meets the eye.  I watched that little boy show off his huge receptive vocabulary and love of opera and I couldn’t help but tear up and think of Maya.  It’s easy for us to know how smart our kids* are, and I like that technology will make it easier for them to show off their skills as they encounter new people. 

*our kids = kids who struggle to express themselves in conversation, regardless of diagnosis

How we talk with our (mostly) nonverbal girl

This is an unedited, not-at-all-set-up photo of what my coffee table looked like this morning. 

That's why there hasn't been a post in a few days . . . I'm nearly totally consumed with Project Communication.  (And the little part of me that wasn't consumed with communicating was actually doing a bit of consulting work, so no free time at all.)  So, it's fitting that I'm here writing another communication-centric post.

Last week I was talking on the phone to a friend, retelling events from the day.  I mentioned Maya's Word Book, and said something like " . . .and then all day she kept saying "library! library!"  My friend replied "Oh my gosh, that's so amazing!!!", which left me puzzled.  It was, after all, more amusing than amazing. Then I realized that she thought Maya was literally saying "library".  I explained that I meant she was "saying" it with the picture card, and then I thought a lot about how Maya "talks" to us.

If you have a child that talks, you probably take a lot of communication stuff for granted.  For us, communication is something we're always working on.  I'm envious of a mom who can call "What do you want for lunch?" over her shoulder and listens for her child to shout an answer from the other room.  For us, talking is deliberate, requiring proximity and props.  Thankfully, most of the time it's pretty easy to understand Maya--she knows what she wants, what cracks her up, and what she likes, and she'll keep trying to "tell" you until you guess correctly (or she gets frustrated and cries,  which is the the saddest part about a kid who can't talk).

To that end, here are some of the ways that we communicate with our (mostly) nonverbal girl.  (Did you see on Facebook that her vocabulary has doubled?  Now she's got "bye" "done" "mama" and "dada"!)  A lot of it is common sensical, but may illuminate things a little bit for readers with "typical" kids who wonder how parents communicate with nonverbal kids.

Note: Maya's receptive language is, without a doubt, one of her biggest strengths.  Because she's able to understand everything with say, I do not need to sign or present picture cards for her to understand what I'm saying.  Also, she has high communicative intent (she wants to tell us what's on her mind), which is also very helpful as we work together to help her express her thoughts.

1. The most basic, oh-so-simple stuff 

• First of all, we ask a lot of yes or no questions.  She can nod or shake her head, and make small yes ("eh") and no ("nnn") sounds. 
• We present her with choices (foods, for example) and she can pick one.
• We ask her questions and show her how to show us her answer Ex. "Maya, do you want to play in the living room (pointing towards living room) or your bedroom (pointing towards bedroom)?"  Then, she'll point to show us.
• We still use signing.  The problem with signing is that we understand her signs, but they are kind of garbled . . . which is why we made the MSL (Maya Sign Language) translation video for her teachers.
• We understand her sounds.   "mmm" means, like, 17 different things, depending on context.  Sometimes we have to guess a few times, but she's (mostly) patient.

2. Low tech stuff

• Paper & pencil (or wipe board & dry erase marker):  This is great for choices on-the-fly, and works on word recognition as well.  Maya isn't currently reading, but if I tell her the words that I've written down, she will remember and choose.  (It's tricky to explain, see the video below)
• Hands: Even lower tech the paper & pencil, I use this when I want her to make a choice and I don't have any pictures or paper with me.  Check this out in the video, as well:

• Picture cards (first made with photos, now with BoardMaker symbols) are really helpful.  When presented with a large field of choices, Maya will work to search for something that she wants, or something that she wants to say, and will give it to us.  We started with just a few cards to make choices with, and now are moving our way up to a full communication book (which explains that picture of my coffee table.  I've been staying up late to make more and more words for her). 

3, High tech stuff

• iPad & Proloquo2Go:  As mentioned a few months ago, Maya has an iPad and an app called Proloquo2Go.  P2G is great, but the iPad is cumbersome.  To truly use P2G effectively, Maya will need to learn to navigate through folders with the touchscreen, tapping and sliding her finger to do so.  Right now, those motor skills are challenging and distracting enough to discourage its use (although we do have a stylus that sometimes helps with tapping buttons).  This week Maya will start using the iPad at school during mealtimes only (so she won't have to navigate through screens) and use the Word Book the rest of the time.  Hopefully she'll slowly adapt to the iPad and we'll use it more and more.  The biggest benefit is that it literally has a voice---she lights up when she hears it say what she's thinking :)
• Other devices:  We have submitted paperwork that will give Maya an assistive tech evaluation, so we can see if any other devices would be a good fit for her right now.

So, that about sums it up.  Even though she doesn't talk, she actually communicates very clearly (to us, anyway). 

It's very exciting to see her eagerness to communicate, and I'm anxious to see how far she's come in a few months.  Trying to launch the Word Book and iPad simultaneously is nearly drowning me (especially after 1.5 hrs at the Apple store yesterday, and then a 2.5 hour upgrade/redownload/restore process last night), but it will be good.  Maya will show us what works best, it's just a matter of being patient and determined and teaching her both systems, so that we can follow her lead.

In totally unrelated news, here is the cutest art project ever (she brought it home today):

Those jungle animals are made from her handprints!  This could not be cuter.

Technology is pretty amazing

So, as mentioned, Maya was fortunate enough to get an iPad for the holidays.   It's certainly fun for games (like Peekaboo Barn) and has now been used by all of the therapists (even the PT-we set it up on the kitchen counter this morning and Maya had to climb up the safety tower to get to it).  Primarily, she's used it with her OT to learn the touch screen---how to tap with her pointer finger, and soon how to drag objects too.

(I'm gladly accepting app recommendations that work on toddler touch screen skills, by the way.  Or really any fun, motivating baby/toddler apps.)

Over the past few days, and with the help of her speech therapist and teacher, we've been figuring out how to customize her new communication app---Proloquo2go (henceforth known as P2G).  This app is kind of considered to be the gold standard right now, and it's the reason I thought the iPad would be worth getting now, as opposed to waiting for the newer iPads to come out a few months from now.  I know Maya's trying to communicate constantly (through sounds, signs, and gestures), and I didn't want to wait a few more months to give her a vocabulary and voice at her fingertips (literally).

P2G has an extensive vocabulary database----tons and tons of categories and words that we just don't need right now.  It will speak for the user (with a voice that you can select).  It will say anything that you type, and you can make word buttons (with pictures) for anything . . . one of the first test buttons that I made was "Parker" :)

Once you get the hang of adding categories and buttons, it's pretty easy to do.  The most challenging part, by far, is figuring out how to set it up so that my 2.5 year old will have some options that flow in a logical manner, rather than being cumbersome and difficult to navigate.

We've put everything into the "Quick Sets" category that's on the Home screen.  Here are the main categories that I've added so far:

If you open the "Let's Get Dressed" category, you end up here:

This is "Arts and Crafts".  I've tried to be consistent about repeating"I want" "More" "Please" and "All done" in most of the categories.  Here you can see a clear combination of using the symbols from the program ("I want", "Please", "All done") and photos that I took of Maya's specific things ("Crayons", "Fingerpaint", "Play-doh").  I think the photos may initially be easier for her to immediately understand.

The "Snacks" category, which is inside the "Food" category:

Here's a video of how I've set it up so far.  I would be really interested to hear feedback, since we're kind of carving our own path over here.   (Pictures of the therapists have been replaced with stick figures to protect the innocent) :):



*As always, if you see a white area and a play button, click play and the video will appear

I hope that this might help out some families who are considering the app, or have it and are unsure of how to set it up----I also hope that if you're thinking "Yikes, what a loon---there's a much better way to do this" you'll fill me in on how I should change what I'm doing :)