Claudia and I are going to Canada next Tuesday-Saturday (November 2-6) because I am presenting my research work at the Geneva Centre International Autism Symposium. We will need people to come visit mom and work on her tasks and activities in our absence. Anyone who can come visit would be much appreciated.
Claudia saw mom this morning and mom was sound asleep. She did her physical therapy, had her suctioned, cleaned her up and mom woke up. Claudia was nervous that mom was sleeping at first because the physical therapist was coming to do therapy with her this morning…supposedly at 7:30. Of course, the guy didn’t show!!! Are we surprised???!!!!! He said that he won’t start to work with mom until 8 a.m. He came at 7:55 a.m. Mom cut on a line for him. He wasn’t impressed. She snapped all the pop beads and unsnapped them in front of him. He wasn’t impressed. He said, “Good Morning” to mom, she mouthed it back but he had turned away from her so he didn’t see it. When Claudia pointed this out to him, he said he doesn’t believe that she can talk. Claudia later found the CNAs and nurses who work with mom and told them to go tell the therapist that mom talks to them all the time---they said she does and continue to tell us how remarkable her progress is all the time. Claudia told the therapist that she has problems with how he does therapy…she said that all he ever does is ASSESS ability and not TEACH anything. As an example, Claudia said to the therapist, “Give me the fergurgle” He looked at her oddly. So she asked again and again. Then she said, “How are you ever going to learn what a fergurgle is unless I stop assessing whether or not you know what it is and TEACH YOU?!!” She said they need to use physical and verbal cuing and prompting, full manual prompts, partial manual prompts, fading… She told him that all they ever do is give a command to assess whether or not mom understands something and if she doesn’t, then they discontinue the service. She told him that whatever tasks and materials he brought to work with mom, he needs to remember that he has to teach them first. Claudia also told him that unless you are working with her muscles in her body that are damaged the brain pathways will never reopen and regenerate. They never heard of the MOVE curriculum which focuses on getting the body to move again so that the brain will work again.
Anthony saw mom late morning into the early afternoon. He said that she was wide awake and alert and happy to see him. They played with the clothespins…mom placed some on the edge of a cup. They also used the clothespins to pick up the pom poms and place in a container. Next, Anthony asked mom if she wanted to play Tic Tac Toe and she said, “Yes” so he drew the board and made the first move with an X. He asked her where she wanted to go and, at first, she only drew tiny lines on the paper. Anthony redirected her and asked her where she wanted to go and she pointed and he drew the O where she wanted it. This is similar to what mom does with Lenny when they work on the IPAD together…usually, mom takes Lenny’s finger and uses it as a pointer to complete activities. Anthony said that, by the last move, mom made her own O on the board---close to the spot it should be in but covering many spots at once---too large. Then mom did some sewing on the sewing cards while she and Anthony talked. Anthony said he made her laugh a lot today again. He also said that she talked a lot today—though sometimes too low to hear and other times, only mouthing without repeating what she’d said. Anthony said that mom told him, “I love you” audibly.
We are all using the vent as a “Laugh Meter”---there is a number that shows how much mom is breathing above the vent---we use that number to determine who got the biggest laugh out of mom (which means who was able to get her to take the biggest breath!). Claudia, Lenny and I hold the record at 25!!!
Dad, Aunt Sophie, and Aunt Carol visited mom this afternoon and night. She played with the clothespins, and drew with the pencil on the magic paper that Claudia bought for her (you rub your pencil on the paper and a picture appears). She also sewed with the sewing cards again. Dad said that mom talked a lot but he only remembered her saying, “Stop it” when he tickled her feet and “I love you.”
I was the last person to visit mom tonight. She was sitting in bed wide eyed and looking so lovely...her hair looked great and her face looked so pure. She was all tucked in nicely and her pillows were set up so comfortably...she looked cozy and snug. She looked cute sitting there amongst her pillows with her stuffed animal piggies! Mom loves to be "cozy." My friend, Maureen, gave me more items and activities that she put together for mom. Tonight, we used a long, orange crinkled tube that expands and contracts by pushing and pulling it that Maureen sent for mom. We accidentally stumbled upon a new use for it though...instead of using it for fine motor development, mom put one end to her mouth and I told her it was a "talking tube" and that she had to tell me something through the tube. I put the other end to my ear and mom clearly said, "I love you" then I told mom a "secret" through the "talking tube" and visa versa. We did this for quite some time. Mom said, "Bubbles" "I love you" "My name is..." "Katherine Louise" and "Gilman" through the "talking tube!" We tried to blow some bubbles but to no avail...though mom did try to blow them!! She was taking deep breaths while I was with her too. Maureen sent some whistles for mom and she and I spent some time blowing those too. Mom was almost able to blow enough to make a sound!
I tucked her in, gave her some stuffed animals to hold, dimmed the lights, and said some prayers with mom. I gave her the remote and left the TV on a 2 hour timer.
Another day that mom was awake!!! No sleepy days in 10 days!!!
"But I will restore you to health and heal your wounds,' declares the LORD" Jeremiah 30:17
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