October 12, 2010

Alabama Song

Originally uploaded by Citizen Rob
I am happy to report that Schuyler and I survived our almost 1,500-mile round-trip drive to Auburn University for the Alabama Assistive Technology Expo and Conference, where I delivered the opening keynote address and also presented a breakout session on AAC implementation from a parent's perspective. Not only did we make it through the drive without any lasting damage, but we actually had a pretty good time.

As far as the drive itself was concerned, there were highs (the Mississippi River, with which Schuyler was suitably impressed), some lows (the actual state of Mississippi itself; the parts we visited reminded me a little of an episode of "Hoarders", except, you know, everywhere) and some in between (getting lost in Alabama, which resulted in a charming and pretty drive but also added a lot of time to an already daunting journey). I've made long, 12+ hour drives in the past, but I never did it sitting on a 42-year old ass before.

The conference itself was outstanding. I'm always impressed by the participants I meet at these things, people who have dedicated their professional lives to helping folks like Schuyler and a lot of others whose monsters are pretty frightening. They've decided that this is what they want to do with their lives, and they invite an everyday schlub like me to come stammer my way through a speech because they want to hear what a parent has to say. They want to know how they can do what they do even better, even though from where I'm standing, they appear to be doing extraordinary work as it is.

Schuyler was her usual social butterfly self. She was a good kid for the duration of my presentations, which is pretty amazing when you consider that I spoke for about two hours, and yes, she's a ten-year old kid with a self-charging battery and a brain that feeds off of new experiences. A lot of kids, particularly those with special needs, require lots of order and routine and even ritual. They don't like change and they can only handle so many new experiences and people at one time. Schuyler is the exact opposite. She craves new worlds and new friends, and when she falls into a routine, that's when she's in danger of losing her way. Schuyler exists in a world with very few grooves and a few too many ruts. Conferences like ALATEC are like a drug to her.

It would be hard to say what the high point of her trip might have been. It could have been her fascination with the exhibitors, including a maker of prosthetic limbs that fascinated her. ("Daddy, I want one." No, Veruca, you cannot have a prosthetic leg, even if it does have flames painted on it.) It may very well have been her conversation with a deaf woman using her device and an interpreter but also by way of sign language that I had no idea she still remembered; she wants to learn more now, and she wants me to learn with her. Or Schuyler's high point may very well have also been the most memorable, when she lost a loose tooth right in the middle of a reception and proudly showed way too many people how much cool blood she had in her mouth. ("Look, I'm a vampire! Look at all the BLOOOOOD!")

I'm never sure if people are charmed or put off by Schuyler, but I also have come to believe that it doesn't really matter. She can be a wild kid and a clinger and a tornado, she can love you with all her heart and she can crawl up onto your last nerve, but the thing about Schuyler that I still value more than much else is her complete lack of guile. She is easily the most genuine person I have ever known in my life, and the older she gets, the more I hold onto the possibility that she might not entirely outgrow that. The thought scares me, but it also makes me inexplicably happy.

Anyway, I'd like to thank everyone associated with ALATEC, particularly Lydia Walls at Auburn and Joe Helm, Assistant Commissioner of the Alabama Department of Rehabilitation Services; Auburn's Kate Musgrove, who was the primary recipient of Schuyler's inevitable girl crush and who was nice enough not to get a restraining order; Sarah and Laramie, two students who were also on the receiving end of Schuyler's stalkerhood ("They are my sisters!"); and PRC's Sandy Baldwin, who not only took care of Schuyler during my presentation and actually helped her clean up after the bloody tooth drama, but who also cheerfully and patiently endured my troublemaking, both during my session and afterwards.

The troublemaking, incidentally, involved the identical responses that I got from many of you as a result of my question before the conference, about what you'd say to the assistive technology industry if you could. I hear it time and time again, and I see it referenced all over the AAC world. "When will AAC producers, particularly the Prentke Romich Company, produce an app that will take advantage of the iPad as a platform for its language system?" In my own defense, I think to NOT bring it up would have been timid and even wrong of me. To be blunt, I don't know that anyone is dying to have a DynaVox app for their iPad, but PRC's version of Minspeak is widely regarded as the most robust and ultimately successful language system for AAC devices. It's not for everyone, but for users like Schuyler, it has made the difference.

After quoting two of you in my presentation ("My heartfelt desire would be that PRC would develop an iPad-compatible interface.", and more pointedly, "The cost comparison outweighed the years of experience of language forming that the Vantage provided."), I gave my opinion. And at the risk of further troublemaking in the service of both a good company full of good people, and the very best of causes, I think that's how I'll end here as well.

Now, I’m sure you’ll talk a lot about this over the next two days, but let me just say that I believe that one of the most promising developments in AAC right now is the emergence of Apple's iPad on the market, as well as whatever competing products inevitably appear. For parents of AAC users who are largely ambulatory, including that huge population of kids with autism, most of the issues surrounding funding and decision-making and parental autonomy may change dramatically with the possibility of purchasing a $500 device at the mall.

And it’s not just about funding, either. It also addresses the resistance of our kids to use a speech device even under the most ideal circumstances. And it provides a rather elegant solution to the social integration problem. Kids with even the most advanced dedicated speech device are still carrying around something that tells the world “I have a disability.” Kids using an iPad have a device that says, “I’m cool.” And trust me, being cool, being like anyone else, that means more to them than it does to any of us.

The piece that is currently missing, however, is development for the iPad by companies like PRC and DynaVox. I could be wrong; there could be plans in the works to bring their language systems to the iPad that I’m unaware of. But until then, the gap will continue to be filled by smart, independent developers like Proloquo2Go’s Sam Sennott. Right now, it’s the Wild West in AAC development for the iPad.

Make no mistake. The iPad will bring a level of democratization to the AAC implementation process that parents and educators will take advantage of. And families using systems like PRC’s Minspeak-based Unity language may very well find themselves in the unenviable position of having to choose between the system they know works best for their kids and the system that they can afford. As a true believe in PRC’s language system, I have to say, that possibility breaks my heart. I don’t think I’d be exaggerating one bit to say that most of Schuyler’s success over the past few years has come about as a direct result of Unity. It has saved my daughter’s future, probably literally.

Now, I’m not sure what that business model would look like, the one where companies like DynaVox and PRC are developing for both their own devices and those available to the average consumer. But look at the trends in both educational funding and technological advances in the consumer electronic market, and I think you’ll see that someone needs to figure out that business model, and they need to do it soon.

So there you go. Please give us an app.


Barbara from Boston said...

Well Said. Great advocacy. And Schuyler is getting even moreable as she grows up!

Anonymous said...

What a great post, and how marvelous to hear how well the trip went.

"Troublemaking"? Well, maybe, but this is a message that needs to be heard, and you are the perfect messenger. Good show, Rob, and thanks for not shirking when it matters. Always.

diviner said...

Speaking as someone who was not "cool", and (as I recently found out) someone who is probably borderline Asperger's, I would have given both legs to the knee joint and my left arm to the elbow to have been "cool" at school.

If companies don't make AAC technology available on platforms like the iPad they are missing a large market and failing in their "Corporate Social Responsibility"

Karen said...

It definitely needed to be said, and I'm glad you addressed it. I'd love nothing more than for PRC to supply an app for an iPad - how perfect would that be for the kids?

Leah said...

How about Pearson as a company to bridge the gap between PRC and iPad by assisting in bringing Minspeak to the iPad? Seriously. I heard the CEO speak this year on new projects and it seemed like a possible fit. Pearson seems to have interest in doing new things with the iPad, especially if those new things can be made useful in educational settings across multiple states or countries. AAC would seem to fulfill that requirement. And Pearson seems experienced in working with multiple players as far as contractual stuff and all the boring details.

Anonymous said...

Good post, Rob ... you do have a gift with words and I appreciate the way you express some pretty difficult and mixed emotions.

Still laughing at the "Corporate Social Responsibility" comment ... hahahahaha. Come save us, O Good Corporations Hilarious.

Anonymous said...


Do you think this will change anything?
(I'm surprised how little play this has gotten in the media.)

Anonymous said...

The Wall Street Journal has made your point nicely!

Robert Hudson said...

Paula: I don't think it will change anything, no, but I think it's an important victory for the dignity of the affected parties. Obama fully funded IDEA, the first president to do so. It's no surprise that he understands the importance of that dignity, Leno gaffe notwithstanding.

As for the WSJ article, I'm happy to see this issue getting more media attention. The issue with insurance carriers will change, I'm convinced of it. Insurance companies care about their bottom line, and AAC companies are fooling themselves if they think that carriers will continue to choose to pay 80 or 90% more for dedicated speech devices just to avoid having a nonverbal child use their iPad to play Angry Birds when no one is looking.

I'm disappointed to see PRC's rep dig in rather than address the software and language system possibilities. Put bluntly, if they look at the big picture and come up with a multiple-platform approach, they'll remain relevant and will show themselves to be forward-thinking industry leaders. If they don't, they'll fail. And none of us wants to see that.

Casdok said...

Yes they do need to do it soon.

Morgan said...

You might not be the person to ask, but: any idea how difficult it would be to make the iPad tougher? The biggest problem I hear about it being used by disabled kids is that one good throw at a wall and it's dead.

Robert Hudson said...

I think it's probably a good rule of thumb that if a kid is going to be physically rough on an AAC device, then dedicated devices like those made by PRC and DynaVox are going to be more appropriate. They are build to take a beating for exactly that reason.

Graham said...

Another benefit of multi-function devices like iPads is that kids who can be literate (I recognise that's not all kids needing speech-assistance) can learn to type on them and use them in that way too.

Frankie said...

Since the Ipad has emmerged suddenly there's a great interest in AAC software. PRC products have been researched and developed over the last 30 years. SLPs learn over time through cont education to teach parents and children to use them. There are already so many communication apps randomly available on the ipad and one concern would be the inconsistency in almost every aspect. Would users become frustrated and thus not see how effective AAC can be with appropriate training? SLPs are supposed to evaluate and determine the most effective and appropriate device for the family. Cost is always an issue, but could choosing the wrong apps or having apps without using them appropriately put us in a worse position? There's a lot to consider.

Jamie Lea said...

You have been silent so long. I hope you are okay. As always, I am praying for you and your family.

jwg said...

Where are you? Hope everythingis OK.

Cait said...

I tend to leave your blog be and then come back to it,r eading in big chunks. And i just wanted to say "HELL YEAH" to the Ipad thing- I'm sort of baffled that no one is doing this, to be honest.

I'm playing around with writing a droid app for my Flytouch (an off brand Droid-based tablet) that would do the same thing, just because it'd be cool, and.. yeah. I just don't know why this isn't happening!