Augmentative Communication Evaluation
This morning, Olivia & I packed up Annie and went to an Augmentative Communication Evaluation down at Children's. Marci gave us some good ideas to help get us out of the rut of doing all the initiating in communicating with Annie, and her being a passive recipient. She taught us how to wait until Annie looks at us before we talk, and wait until she reaches to turn the page of a book, before we help her turn it. She also recommended a device called "Go-talk" to help her make choices, such as what book to read. We also looked at a touch-screen computer game that I think would be very motivating for her.
It's interesting how in the first year after her brain injury, I decided to "narrarate" the day in an effort to drag her out of her fog, but now, my constant chit-chat actually de-motivates her from initiating any communication. In other words, I have made a habit of spoon-feeding her information, and now I have to retrain myself in order to retrain her!!
Marci noted that Annie has "yes" and "no" down pretty good, but needs practice in using those words immediately, accurately and appropriately. When she does, then I can add in more complicated questions such as, "Do you want to go to get a bath, read a story, or go to bed?" Then repeat, "Do you want to get a bath?" (yes, no), "...read a story?" (yes, no), "...or go to bed?" (yes, no). That way, we can eventually make her communication more sophisticated and purposeful.
I really appreciate Miss Claudia, Annie's regular speech therapist, who also came to the evaluation, so that we can work together every week to help put these things into practice. It seems that for the last few months, Annie's progress has been hindered by her seizures, and maybe now, if she is moving into a more "up" trajectory, we can actually implement some of these ideas. Unfortunately, she did have one seizure right before the evaluation, and then another in the middle of it. She's had four today total, so that's a bit disconcerting.
She actually only had 2 full days of no seizures this past week, and has been having one or two a day--and again, I really don't know what is causing them. But we go up again on the Banzel tonight, and down on the Zonisimide tonight, so we'll see. These seizures are a huge barrier to her progress, though, so I do wish God would simply heal her of them. And I'll keep asking Him to.
Sometimes I wish I had speech, OT, & PT therapists who lived in my house. Annie just has so many deficits--using her hands purposefully, walking, eating, talking, blah, blah, blah--it is overwhelming for me... When she is in a medical valley and all I do is manage her 15 medicines, and keep track of her seizures, it's almost easier. But when she starts going up, I am overwhelmed at the enormity of helping her relearn to walk, (or simply scoot!), talk, eat, and use her hands. Oh, and I forgot to mention--her teeth. I need an inhouse dentist to brush her teeth every morning, because again, I'm just not getting the job done. And I have to say it again--it's even more frustrating because I KNOW God can heal her.
Jean
Have mercy on me, O Lord, for I am weak; O Lord, heal me, for my bones are troubled; my soul also is greatly troubled; But You, O Lord, how long? Psalm 6:2-3