Day 4 of "A Week In The Life Of Blake"- Thursday is the last of Bs 3-day school week. A quick note about her school, we love it because it's currently a 3 teacher to 4 kid ratio, which is pretty amazing because B gets a lot of one on one attention and help. It's led by a Speech Language Therapist (with OT support) so there is a strong emphasis on communication. Girls with Rett are noted for their ability to communicate through their eyes. Because her motor skills are so affected, typical non-verbal communication techniques like signing or holding pictures are also challenging and pretty much impossible. So, while we encourage using her hands to point or motion toward pictures, we really try to reward and reinforce her eye gaze communication. This will be the building block for using a picture based communication system (that she is learning in class and we will learn at home too) and eventually this will lay the groundwork for her being able to use an eye-gaze computer system to communicate, called a Tobii (you may have seen one of these used by those suffering from ALS). The Tobii is in the $17-18K range, so we will start to train her eye-gaze communication using low-tech methods and work up to the high-tech (while we save/raise money for it ). Luckily, Vandy has a Tobii and her teacher plans to let her try it once some of her foundational eye-gaze communication goals are met--it's a process. You'll see below, we use flash cards for her to identify her animals. She knows every single one. We'll say, "Point to the monkey?" and she'll often just stare really hard at the card with the monkey. We reinforce that by saying, "I see you looking at the monkey. Can you point to the monkey?" If we give her enough time, she usually does hit at the right card. She still has the attention span of a 3 year old, however, so she's very successful for the first few minutes and then she gets a little sloppy toward the end. But she knows her animals, objects, numbers etc., but we still need to work on other things like colors and other more abstract things- Finding time for it all is a challenge. We have pictures of her 4 favorite shows next to the TV and plan to start adding other pictures around the house for her use. She'll let us know she wants to watch something by going over and slapping at it (many a football game has been interrupted by her requests ). She got mad at me the other day when I put in Yo Gabba instead of the music one she touched. Once I put the music DVD in, she walked over in front of the TV and smiled. She communicates.
Because our OT appt was cancelled Monday, we rescheduled for 3:45 today. I was worried when I picked her up from school and they reported she did not nap...but thankfully, we had to drive across town to Franklin so it was long enough for a power nap. She woke up happy and excited to see Mrs. Sara. Today they did brushing and joint compressions to give her body the "proprioceptive input" her body needs to organize her senses and help her have better body awareness. The vest she is wearing helps with this as well. She also got the "vestibular input" (I talked about Monday) by swinging. All of this to get her in a good state to work on some fine motor activities. She did great today and was giving Sara lots of kisses!
Most Thursdays, my amazing grandparents make the trip from Athens, AL to sit with Andi, so I try and schedule my doc appointments that day, and run errands etc. They usually bring dinner too, and my house is always a bit cleaner when they leave. They are precious and wonderful and truly GREAT-Grandparents to Blake and Andi! Thanks for reading these long posts. You all have been so encouraging to us!