Showing posts with label so excited I could burst. Show all posts
Showing posts with label so excited I could burst. Show all posts

Thursday, October 25, 2012

Her Wicked Sense of Humor (and an AAC update) - October 25, 2012

My kid continues to make excellent progress with her AAC device. Nope, we didn't have overnight magic - I have learned not to hope for that anymore. Things take time, patience, energy, and...well...time time time. And time. But. She takes it to school every day and the teachers work with her to help her find words and participate in discussions. Her therapist is carefully leading us through the maze of how to use it, where words are, and how to help her communicate - and she keeps me in check when I want to move things along too quickly. (Plus her therapist is great at slowly unlocking more words/pages each week--she just added a hippotherapy page!)

At home, the kid uses it when she feels like it and doesn't when she doesn't (to mama's dismay - but I am learning to back off) but she does things like ask for milk vs. juice spontaneously, and she also has been sharing her excitement about an upcoming field trip. Overall, I am just thrilled with how everything is going. I'm so glad we went in this direction with this particular device! But...I want to fast-forward to mastery, as I always do, and I want to jump into sequencing, and...yeah. But when I step back and see how far we've come, I'm bouncing off the walls again.

Meanwhile, she is absolutely obsessed with me taking videos of her dancing. She will take her iPad and put on the song "The Sid Shuffle" from Ice Age 4 (they danced to it at school), carefully prop it up on the couch, step off the couch, and then whine and point until I get my phone out and film her. If I fake it, she knows. So I have lots of short videos of her dancing, falling, wiggling, whining, and more. Yesterday I caught what is probably my favorite, so I decided to share it here.

In brief, she notices her SMOs (ankle braces) on the floor, picks one up, dances with it while standing completely unassisted, and then tosses it aside. That little smirk on her face at the end kills me as my giggles probably reveal. I imagine her thinking, "Pssh. I don't need those, I stand and dance just fine!"

I will leave you with some referral links, if you have any interest in buying or clicking or whatever to help me out a bit...


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!

Tuesday, October 2, 2012

Our AAC Journey - Moving Right Along - October 2, 2012

First, my kid rocks at using a talker when she's at the therapist's office.


Sorry the video is a wonky size - I'll try to fix that sometime in the future.

Her therapist brought her out to us and had her ask for juice with her talker (well, the therapist's talker - I think that's a VL1 and my kid will have a VL2). If you can't hear it, it says "Drink" and then "Juice." Notice that while she needs a tiny bit of wrist support, she needs no guidance to find those buttons. Every time I watch this, I get chills - and further excited about how much more she'll be able to tell us soon. And then we had to model for her by answering using the talker and as you can hear, I didn't know what I was doing at all - so mama has to learn too. And I CANNOT WAIT. (Also, when she gets her very own talker, it will sound more like a little girl's voice, haha.)

Second, at school, she's using a very very very simple AAC device and is putting together two and three-word sentences consistently. Because she's a genius, obviously.

Third, this week after a few follow-up phone calls (I was procrastinating making one more and figured I'd do it tomorrow), I received in the mail the notification from Funding Source #1 that yes, they will in fact cover her talker! (Of course there's the whole "after deductibles and co-pays and whatever else we feel like saying you have to do" part of that letter, and they denied coverage on the carrying case, but I was expecting a full-on denial from FS#1 for various reasons, some obvious and some not so much, so even THIS was exciting!). Meanwhile, I was told by PRC last week that Funding Source #2 had already given its pre-approval. So it's covered - the funding step is OVER.

And that means HER DEVICE WILL HOPEFULLY SHIP SOON! (Next phone call today should shed some light on that bit.)

ETA: And indeed I have the confirmation emails now and it should ship by the END OF THIS WEEK!!!!

OMG OMG OMG!

Everything is about to change for my daughter. And for the rest of us too.

Stay tuned!


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.