Our oldest daughter Elsa has complex communication needs. In order for her to express her thoughts, feelings and wants, she has to navigate complicated systems that require a lot of work and practice. She’s super smart, so that helps.
But that doesn’t mean it’s easy.
Through babbling, labeling and reiteration, we all come to realize that certain sounds and symbols have meaning and can be linked in endless combinations. Elsa has learned these things, too, but doesn’t have verbal language to convey her ideas.
Instead she has tools. Two of them. And they are oh-so-different.
Her high-tech tool is a talker device called the Accent 1000. Doesn’t that sound like a computer from the future? The language system that she uses on her Accent is CoreScanner and it operates in full blast mode. Each of these small buttons provides an in-road to even more buttons.
So… how does Elsa move through this thing? By gently touching white and orange triangle sensors on her tray, Elsa can move between the colored blocks on the screen. She scans options with the left triangle (the big one), and selects with the right triangle (the small one). Once Elsa picks a block, she cycles yet again - this time through the smaller buttons within each block.
When she selects a word, it goes into a box at the top of the screen. Word-by-word, she builds her sentence. Then, when she’s ready, she hits SPEAK DISPLAY, and her message is articulated in a child’s voice. It’s powerful, specific and exhausting. After about an hour, she needs a break.
Can you tell?
Good thing we have her PODD book, a light-tech tool. PODD (which I featured on the blog in Speaking PODD: 9 Things to Know) stands for Pragmatic Organization Dynamic Display. Pssst! The main character in my debut picture book DANCING WITH DADDY uses PODD, too!
PODD books come in many varieties. Elsa’s current PODD is a thick spiral-bound flip book with tabs that allow her to build messages through collaboration with a smart communication partner. (That’s me, my husband, my daughters, and her speech therapist and school team.)
See that scrunchie on Elsa’s wrist? She’s working on raising that hand when she has something to say. Look, she does! (We’re still fighting some of her hitting behaviors… hence, the arm stabilizers.)
Though we’ve been using PODD for several years, I’ve always wanted to go to the official training. This September, I finally had my chance to attend this in-demand two-day course. PODD expert Linda Burkhart led the class, walking us through the ins and outs of PODD, a system designed by Gayle Porter of the Cerebral Palsy Education Centre in Australia.
One of the most important things about PODD is that the book always needs to be within arm’s reach, so Elsa can gesture toward it or look at it to initiate conversation.
Elsa’s book has 12 frames on each page. Hers is a high-contrast book with black background, to help her focus. Below you’ll find her first page. These squares are called pragmatic branches because they allow her to begin building her message with a clear intention and direction. The numbers on each square let her smart partner know where to flip next.
Naturally, Elsa loves PODD because it’s partner powered and kid directed. She is really social, and PODD requires a communication buddy. Attending the two-day course gave me renewed energy for PODD. If I don’t model speaking on it, how will Elsa know how to get to what she wants to say? It was very convicting. My girl deserves nothing less than full access to full language, at all times.
We used the puzzle activity page in Elsa’s PODD book while playing with our friend Kendall at a recent meet-up with fellow Wolf-Hirschhorn Syndrome families from Illinois and Iowa. We’ve known Kendall since she was a toddler, and Elsa was just a baby, and it’s been incredible to watch her grow and flourish. She is AMAZING and quite the role model for Elsa.
Here’s the full slideshow of our WHS playdate. It’s always wonderful seeing the kids and spending time with folks on this same rare parenting journey. Truly priceless. We are blessed by their friendship and, also, by the amazing tools that help our girl communicate.