Just finished year two of our participation in the PMS natural history study at Stanford. Darus was a trooper, and although he was grouchy at times, he pulled through. The study isn't easy - but it's essential for research and future drug therapies/cures.
In my opinion, the best part of our adventure came at the very end and, unfortunately, cannot be measured by a standardized test.
As we were waiting for our flight, we stopped at a restaurant. My mom and I played cards while Darus watched his iPad. We treated Darus (and ourselves) to some French fries. When the fries arrived - they were hot. He kept trying to reach over the table to grab at them. I pulled out his talker (AAC device - a mini iPad with proloquo2go) and quickly photo'd the fries and added the icon to his talker. He then -- without me even prompting him -- "asked" for fries by touching the "French fries" icon -- all the while discriminating the French fry icon from the other icons present on the page. My mom and I could not have been more proud of him! (I've witnessed him doing this before, but it was my first time programming and initiating it.)
So long Stanford! See you in July for our inaugural PMSF Stanford Symposium!
