I picked up Lilli's new ipad from her school yesterday. My housework is going to seriously suffer even more for a few days while we play with it.
Last night I had a brainstorm, and this morning I tried it. I used an app called "Proloquo" that Lilli's teacher and principal had put on the ipad for her. It is a communication device that can "speak" for her, if I can get her to learn to use it. I pulled up the typing keyboard on the app, and held her hand. I made her type "go." On this app, when you hit "speak" it says the word for you. So I made her hit "speak." The voice said "go." Then I quickly put on a Sesame Street Youtube clip. At first she resisted. She does not like to have her hands touched. This I expected. I only did it a few times...and I saw the light bulb go on.
I wanted Lilli to see that if she types a word and hits "speak," she can tell me to make the movie go. Believe me, she gets it.
After working on it together for an hour and a half this morning, Lilli was already leading my hand to the "G" and the "O." That is the great thing about hand over hand. I lead her hand until she is confident. Then she begins to lead mine. And then one day, she does it by herself.
Together we typed "Mommy," "Lilli," "eat," and "movie." Lilli smiled and kissed her own hand. That is "Lilli language" for "this is cool, I love this!" She also kept trying to SAY the word "go," which came out kind of like a breathy "gee"
We are on a break. Josh is beginning to stir from his morning nap. Lilli just dug in the trash and came to me with coffee grounds all over her hands. The dishes are piled high and Lilli needs her medicine. Guess I'd better get out of ipad world and get back to life. But my joy from this morning will distract me from the chaos.
Jennie-
ReplyDeleteI am so sorry to hear about Lilli's health conditions. I'm actually writing because I was diagnosed with a seizure disorder three years ago. I'm familiar with the drug trials and awful side effects and my heart goes out to Lilli because I can only imagine how scary it is when you're too young too understand why you're body isn't acting the way you want it to. (It's scary at 35!)
I had a Vagus Nerve Stimulator implant about 6 months ago. While the VNS, like all therapies, has side effects, and some of them are really weird, one of the beneficial side effects is that it seems to be an anti-depressant. The VNS hasn't cured my seizures but it has helped shorten the post-ictal state.
I worked with a ten year old who had cerebral palsy and seizure disorder who had the implant, and her seizures stopped all together.
By no means is it a miracle, and I'm not promising any outcomes, but as I'm sure you've learned, little steps can make huge differences in the day-to-day quality of life.
I'm not trying to push the VNS but when I had the implant, I didn't know any responsive person who also had the surgery (in fact I still don't.) I write to tell you that it's a possible therapy you may want to look into and if you have questions about the real-life side effects (not the stupid drug inserts that the pharmacy give you) I'd love to talk to you.
High School seems like such a distant memory, doesn't it? When our biggest worries were preparing for the AP exam or finding the right prom dress?
It sounds like you're doing a remarkable job and Lilli is so lucky to have you as a mom. I work with children with disabilities who unfortunately, were abandoned by their parents, unable or unwilling to accept their child's challenges. I can't begin to imagine how difficult it is to face each day, but it sounds like you're doing it with grace and teaching Chloe, Josh and the rest of the world, what it truly means to love unconditionally and see past the outside of a person and believe in someone when all other indicators tell you to give up.
Just as I remember you in school, you're a pillar of strength and filled with faith. You, Lilli and your family are in my prayers.
-Jen Morissette