Thursday, October 11, 2012

Our AAC Journey - It's here! - October 11, 2012

Let me assure you, although I'm sure you already know, that when you are the parent of a special needs child you NEED to be a squeaky wheel. Squeak squeak squeak! Several times now, we've been on a waiting list of some sort and I've called to follow up and because of simply calling, I've moved us up and/or just gotten us into whatever it was we were waiting on. I hate "bugging people" but I'm always polite and friendly and I just stay on top of it. I have to, even when I don't want to, even when the phone grows teeth and wants to bite me, even when my anxiety swirls. I give myself a bit of love and Reiki, I pick up the phone, I swallow the nausea, and I call and I call and I call.

The talker is just part of that long line of squeaky wheels. Because I was copied on a letter, I was able to make PDFs of that letter and forward them to the proper channels rather than waiting on said channels to receive their own copy of said letter, find it on a pile on someone's desk somewhere, open it, sort it, file it, think about it, and make a final decision. I really believe I shaved weeks off of our waiting period. And now here it is! She has it at school today for the first time ever!

Reality is sinking in now though. This is going to be a long, complicated road to learning how to use the AAC device daily, fully, completely. Despite the fact that my daughter has been using this device for a few months now, she's been using it once a week (and sometimes less, depending on our schedule) and in a very limited context. Now we own this and it's going to be with her all the time. It's not always the easiest system to use, even for me. But we will take it one day at a time, one word at a time, and I believe that soon - soon! - she'll be able to tell us so many things. And I can't wait to hear them! And having this device in our hands makes me so glad we went in this direction, made this choice. Plus, we have already noticed that over the past month or so, she's been saying more words in a clearer way than she was before - a credit both to her amazing speech therapists and to the device. I believe someday she won't need it at all. But someday is someday and now is now - and this is so good for us right now.

(For whatever it's worth, I've seen mockups of the next generation of these devices and not only would we have had to wait weeks or months to place our order but one of the new ones seems too small for my daughter's hands while the other seems too large. We would've made it work, but the one we have right now is baby bear's juuuuust right for now. We'll see what she needs when she's older.)

(Oh. And I am THRILLED that the SFY app lawsuit seems to have been resolved - that app may become a valuable tool for us either when my kid is older or if - heaven forbid! - her device breaks and we have a time period before we get a loaner/get her device fixed. I've been quietly but intently following that closely and I cheered aloud when I saw the post yesterday!)

So for now we're just playing around. I took my first crack at programming last night to update her school's name (her therapist didn't know it) and to add "Good Morning" to a topline level. Later on I'll start digging deeper into the programming - I have a list of things that need to be added either by me or her therapist. But I've found this part of the process, so far, pretty intuitive. I just have a lot to do since she's not yet at the stage where she could do it herself or just type things. (Teacher names! Therapist names! Friend names! Target! Raging Burrito! Signing Time!) (Favorite thing I stumbled on? The device has knock knock jokes and riddles built in. I have to teach her how to access those...)

ETA/Update: Yeah, her therapist just wrote me after I sent her a bunch of programming questions asking me very gently and nicely to please hold off on doing anything else and to let her handle it at first. I actually greatly appreciated that - while I kind of now get *how* to add things via the machine itself or the software, she knows what she's doing as to when to add what, where, how, and when! She's amazing and we are so lucky to have her on our team. So for now...I'm being as hands off as I can stand with this machine. Hard for me as I want to do everything Right Now By Myself but I trust the process and the experts too!

Here's a video of her telling us her name. For the record, she has been able to say her name for a while - but I suspect nobody but me would really understand what she was saying (Ryaoooo! Baaaah!) and now when we're at the grocery store or the park and someone looks at the sweet little girl and asks her name, she'll be able to reach over and answer loud and proud. This morning she also told me her favorite color is purple - while I didn't know this for sure, I had my suspicions, and as you'll see, we chose a purple edging for her device for that very reason. (It's so cool, you can snap various colors in and out, so if she's having a green day, we'll change that up!) Note: We were accidentally sent the wrong keyguard (45 not 60, I believe), so right now we're managing without it but hopefully we'll have the right one soon. She's doing pretty good without it though!


  1. Thank you for stopping by my blog last week via Love That Max! What an exciting time this seems like it will be for Ruby - to be able to use this device and have conversations and communicate with family, friends, teachers etc. How wonderful!

  2. Good luck iwith the programming! I find chocolate helps ;) also
    I programmed a lot with Cooper next to me so he could see how it all worked and gave me some ideas of what he wanted and where things would be located as we think a bit differently than kids!

    1. Interestingly, I just got an email from Ruby's therapist - the entire practice specializes in AAC devices/communication - asking me to please hold off on any programming for now and let her do it. :) I'm very lucky to have her on our team!