Friday, August 31, 2012

Our AAC Journey - The Beginning - August 31, 2012

At the beginning of the summer, my daughter's amazing speech therapist (we'll call her M) sat us down and told us that she felt it was time to start exploring AAC devices for my kid. And we were all more than ready to accept this challenge. My daughter's speech has come so far in the past three years since she's been working with two very wonderful speech therapists (before M there was L, and L was also excellent). We actually understand many words now and on occasion a few multi-word sentences. My daughter also has signs - and she has started using her iPad to communicate in a very unconventional way by rejecting most of the free versions of the speech apps that I put on there to try out and instead using certain other games and apps to tell me what she wants. For example, she puts on a game about a monkey who eats fruit when she wants fruit, tapping insistently on whatever fruit it is that she wants (oranges, grapes, apples...) or putting on an app that features songs and scenes and insistently pointing to the scene with the ocean and the octopus while saying words like "water!" and making signs for swimming, pointing to herself and then outside...all while I was saying back "Yeah, well, it's cold. And the pool is closed. And NO WE ARE NOT GOING SWIMMING RIGHT NOW."

So you might say to me, Marla, your household has an iPad? That's great! You've got the technology already in hand. You're done!

I wish it were that easy. I have a few issues with using the iPad as a speech device for my daughter that are, I'm pretty sure, unique to our situation - I WISH this was not the case, and I suspect it will change as she gets older. But for now (she's 5), the problem is how stubborn she is with the iPad. She uses it as she feels like using it and she refuses to use it for just one application. Even at the new therapist's office (I'll get to that in a minute), she took an iPad she was handed that was fully loaded with a speech app and she looked at it, laughed, and immediately found the music, the games, and the other apps loaded on there. It's a very useful tool for her and for us in so many ways, just not this one.

So. We started seeing V and then S within a practice that is dedicated to all things AAC - it's their speciality and they are the best of the best. And it has been incredible. First we ran through all of the usual evaluation hoops - and my kid rocked them. She went to the smallest level of squares on a page and still was able to find spots within the grid. She sorted things into categories with ease. Every step of this process was met with smiles and cheers. She impressed the therapists over and over and over. It felt good to see my kid succeed when so many times evaluations are full of me making excuses or just being kind of frustrated.

We tried out different devices including the aforementioned iPad, the Dynavox, and the Vantage Lite2 (and one other that is lesser known but that we didn't care for so I'm not going to get into it). The Dynavox was really shiny, and the therapy practice said that almost all of the kids they see use it. However, they just didn't feel that it was the right choice for us, which surprised all of us (I really walked into that office thinking OK, Dynavox, that's it, end of story). The therapists said, among other things, that the number of options that my kid would need on a single screen would max out quickly with the Dynavox - and that the VL2 would offer that extension. Also we all agreed that we liked the VL2's language system better for her. Plus, the VL2 was lighter weight, had a well-placed handle (important for a kid who can almost kinda sorta walk-ish) and had fewer bells and whistles (give my kid a camera and games and Internet access and we're back to the iPad problem). So we chose the VL2. It just felt right.

And then I got a call telling me that while it wasn't public information yet, the VL2 was going to be discontinued shortly in favor of a newer system. So we put this all on hold for a week while I waited for news - or at least a press release - that never came. And waited. And waited. And was sad that we were so close and then, as always, an obstacle was thrown in our path.

At last we went to the therapist and said look, we have to move forward. We just can't wait. What do we do? And we talked it through and weighed several options (go with the Dynavox after all? wait? see if we can get a used machine? talk to the wonderful local support person about all this?) and eventually we all agreed that the VL2 was still the best option and that really, if you're getting involved with technology, you could kill yourself chasing after the next newest option. My kid has the iPad2. The iPad3 came out soon after - what am I going to do? Nothing. The iPad4 probably will be fancypants. I could never keep up. Technology is changing month after month, year after year. It's just a fact.

FINALLY the official statement from PRC was shared with me and then became public shortly thereafter - and it is that the VL2 is being discontinued because of a part issue. I think that because I knew this was coming, the blow was softened once it finally happened (because I was pretty much crying when I got the very first call about this). Also, PRC isn't taking away its support of the system, it's just not making any new ones. I have high hopes that the next generation of product that it releases will be even better. I will have a pang of sadness when that happens, wishing that we could have just waited that much longer to have that shiny new thing, but we couldn't. The right thing for us for now is available and therefore it's the thing that we're pursuing. And there is the hope that we'd get approval for a new machine before the magical five-year-window expired if we needed one because the case would easily be made that the machine we had was actively discontinued.

I am BEYOND excited and thrilled that in a few short weeks (because this is a done deal, the paperwork has been submitted and is moving along even as I type this) my daughter is going to have a new method of communication. And I am also so so so thankful to M that she put us in touch with V and S who are going to be holding our hands - literally and figuratively - every step of the way, teaching us how to appropriately use the machine, how to program it, how to maximize it for my daughter. I'm also thankful to our local PRC rep who has been open and honest with us and who is going to help us teach others around us about this system, and I'm VERY thankful for a school system that is full of excited people eager to reach out and help my kid. (They've been working with her with very basic AAC devices since she started preschool.) I couldn't do any of this alone and I am very lucky to have a supportive team surrounding us.

And so we wait. And I will write a new post when we have the device at home to let you know how it works out for us.

1 comment:

  1. You and I spoke about this at length last week. Coming from my position as a friend (with a mostly neuroptypical kid - except for some SPD stuff) who knows R pretty well at this point, the choice to use an AAC device instead of an iPad makes a lot of sense, given her age, abilities and particular needs.

    Ultimately, what matters is that SHE will finally be able to communicate more easily, which will open up a whole new world to her in terms of being able to connect with and relate to others, which is going to be an amazing and beautiful thing (it makes me teary-eyed to think about it, because I adore that kid and she is so smart.) THAT is what matters in the end, and people should be supportive and helpful to you all during this process, because your decision took into account many factors that may not be true for someone else with a child who needs an AAC device/iPad app.

    I'm so excited! I can't wait to see her with the device! (I will have tissues with me. And a camera!)