“Mommy cooks. Juliana plays ball.” This has been the hot communication expression of the week. We’ve been working on something new and when I left off last week, I said it would be really frustrating or really fun. It has been both.
My repetitive babbling is all about helping Juliana focus on the activity of choice (a ball that she really likes) while I cook. This is part of a new communication system that they have begun using with Juliana at school; adopted from the SCERTS model that is used to help Autistic children communicate. We had been focusing on simply having Juliana identify nouns, but with this method, she is actually building a micro sentence of activity through picture cards.
At first, my phrase brought about more screaming. Juliana didn’t want to play ball while mommy cooked. She wanted to be in my way and step on my feet. That wasn’t a part of the plan. Then, one day when preparing to cook, I had a bright idea.
I decided to change what was happening overall during this time of food mayhem. Juliana obviously didn’t like sitting still while Jessa got to play during meal prep. So, I put on a favorite show for both the girls–Curious George. And the magic happened.
Juliana was content to watch Curious George and play with her ball while I cooked. I was a little baffled because even though she likes George, he doesn’t hold her attention for long. Now, with a combination of George and the ball, I can get a meal prepared without a meltdown or a toe crunch.
It may not seem like much, but I’m really happy about this. And it’s not just about the cooking. It means we can move on to our next step–to use the picture cards for many simple activities that Juliana does around the house.
During this early phase, we build the expression. But later, Juliana will use the cards to express how she’s feeling or what she wants. This is BIG! For some time now, Juliana has been ready to express herself beyond screaming, she just needs the right medium that she can manage. I think this may be it.
This is some really good communication progress for her and I can’t wait until she makes her own sentences. Personally, I’m holding out for something like this:
Enough said (or shown that is).
I am so glad that the ball and George can be a distraction for her while you cook!!! Miss Ashlie misses your girls. The last two pics made me smile. How wonderful she is learning new avenues of communication.
You know how I like to limit video watching, so I switched the times around for them to watch while I cook. And she only gets the ball at that time, so it makes it extra special. The girls are doing great and I am excited to see what this will open up for her.
What can a individual do to assist parents in continuing their educational journey for children with AS? Are their financial needs to attend conferences where speakers, doctors, and AS families, gather together to learn about the latest research being done?
What you’re doing right now is a good start–acknowledging the disorder and helping to spread awareness. A lot of people don’t even know it exists. The Angelman Syndrome Foundation does an excellent job of research and funding special training for parents. Read more about what they’re doing at http://www.angelman.org. You’ll see tons of information about the annual conference and research needs.
There is more to add beyond what I could possibly write here and I so appreciate your interest in the AS cause. Please feel free to email me at [email protected] if I didn’t hit all of your inquiry.
And please stop by again, I write to raise awareness, but I wouldn’t be the least bit upset if something I said sparked a donation to the Angelman Syndrome Foundation. AS parents need research to help our kids grow and thrive through such a rare disorder.