Thursday, June 4, 2009

Loud and Clear as Ad: Thanks

It was not that long ago when wondering how I'd get to know my daughter kept me up at night. For us, the diagnosis of Rubinstein-Taybi Syndrome included cognitive differences not to be measured and lack of functional verbal communication, among other things. Bad combo, I have to say. Thoughts too half-baked and complicated to lay out here, I suspect that at least in Addie's case, these 2 things (intellectual differences and being functionally non-verbal) exacerbate each other to some degree. I agonized about the future, about how I'd know when she was hungry, tired, hurt, all the basic stuff a mom is to take care of. For a long time, I didn't dare think beyond those fundamentals.

Because I agonized out loud, in communities of parents with differing parenting needs, I got hints and links and "worked for me's" and tips... I got to draft in the wake of brilliant, resourceful parents before me.

Fast forward to now, I sleep pretty soundly. Addison has multiple ways to make herself understood and uses them in different hierarchies depending on with whom she is trying to get her point across. The fundamentals are mostly taken care of, though sometimes still require detective work.

Addie's home sick today - one of those ugly low coughs that tell you it's time for a break and some extra sleep. And the girl has got to go to school tomorrow - I finally have a date with my dear friend and a couple of kayaks! So the plan for today is to lay quite low, low enough to snore at times.

After driving Cate and her friend to school, we came home. Addie signed school and I had to tell her again she's not going today, because she's sick. She signed "sick" in response, indicating her agreement. Then she took her DynaVox V communication device and told me "I want to watch a DVD." When I asked which one, instead of selecting it from her page, she tossed my hand at the latch on the entertainment center, clarifying that she'd like to browse. After opening the cabinet, I left the room to make my coffee and log on, expecting to see upon my return a random pile from which she should choose...or from which I would choose.

But this is what I found:

Every one of her Signing Times DVDs lined up, being considered. I asked, Oh, you want to watch Signing Times, which one? Her response was to go bring her device closer and hit "I want to watch a DVD" about 6 times in a row. No need to figure that one out, she intended to watch them all today - all 28 of them, if she wasn't going to school.

From there, we put them in order according to volume number within each of the 2 series, practice time DVDs at one end. It was hard for her to see those tiny numbers, but she stuck with it and signed the numbers as we went. Then we counted Rachel's on the cover and flipped them over to check out each Alex and Leah pose on the back. Ultimately, she decided to start at the beginning with series 1, volume 1.

You can see how proud and delighted she was to get the marathon she had in mind underway (so much so, that the beloved toy snake of late rests coiled and untouched behind her), to be completely in control of its order and pace.

She signs, babbles and giggles as she watches (and today - coughs). She added a new form of interaction with it that I had not seen before. She yanked her device over and began to look for a few words as they appeared on the DVD. I caught this pic of her Grandma Lo Lo on the device while Rachel demonstrated the sign for grandmother. The interesting part: Addie had hit the button just before the sign was introduced, that's how well she knows each DVD.

As this unfolded, my pride in my brilliant girl underpinned all other thoughts. Looming large among those other thoughts is an ever-present gratitude to all the parents who have shared their experiences, research, expertise, ideas, and resources with me to Addie's benefit. There are so many such parents, but in the realm of communication, there are a few I have to call out specifically: Lisa P (DynaVox and SGDs), Pam H (all things AAC, implementation success), Lisa O (ASL and Signing Times), Debra D (light tech) and Elsa B (expectations of others and about a frillion other things). I appreciate you and your sons and daughters that inspire you - I see your families in these photos posted here of my daughter making the most of what you have taught us. Thank you for the peace, confidence and fun you have helped restore to our family. And for the sleep at night...


Jessica mommy to Alex/ RTS said...

And in a few years Im quite sure you will see your name in shout outs. You inspire me, you encourage me!
Thanks for paying it forward:)

Cindy said...

Too bad she's sick, but I can see she's making the most of it...a Signing Times Marathon! What fun! And so great that she lined them all up in order. I didn't realize there are 28...we only have 13. Must investigate.

Brandi said...

As I read your post, I found myself in amazement at how you have set up Addie for success. She is one brilliant little girl that is going to teach the world a lot. She inspires me, you inspire me. I look forward to the day Nathan can begin using a communication device! I really would like to talk to you more about how and when you got started.
I hope she's feeling better and you get/got to go on your kayak date!

Harris family said...

We share participation on the RTS list. As new families join our little community, inevitably a mom will write a post with apprehension and anxiety: their precious child is clearly in need of learning augmentative communication methods. For years, I would email each one privately, ascertaining their level of interest and always making sure they know I am available as a resource.
Now, I smile. I know that you, Terri are there to help guide them with all the skill and knowledge I have and more. I bow to you and your beloved Addie for showing us all how it's done.