In terms of communication she has been promising. Today her speech path said she saw her sign “all done” two times at snack time after using her communication device with four buttons to help her eat. The buttons have pictures to help her identify what she is going to choose. From left to right the buttons are always the same. The one on the far left asks for either pudding or applesauce saying “pudding please” or “applesauce please depending on the day, the next button asks for oatmeal or her main course saying “oatmeal please”, the third button asks for her drink saying “drink please”, and the last button says “all done”. She is consistent in her attempt to hit buttons but her aim needs improvement. We can tell what she wants based on which pictures she is looking at, and we simply correct her by using her hand to push the button that she intended to hit and give her a bite or drink of whatever she wants.

With new information coming out about eye gaze and Rett’s, our speech pathologist believes we should try and help her develop her eye gaze skills. The new research says that girls are generally very consistent with eye gaze, and can follow verbal commands by gazing at pictures when asked questions to answer the questions. Pretty awesome stuff if you ask me. Anything we can do to get her communicating is very important and beneficial.

Now she has began to use a three button switch to eat. We use object recognition at this point for her to make choices, and set her bottle near one button, her oatmeal on another button, and her applesauce or pudding on the third button. She will now make choices of what to eat instead of only when she gets a bite. It’s remarkable to see the progress she has made in a few months. There is so much more to say about all this and about the other things we have been working with her on, but I need to organize my thoughts and write some real things down. This is just a quick update of steps that have been taken in communication.

She also has began to use switch toys appropriately. She will push a button that has a cord attached to an electronic stuffed animal and watch it walk, jump, or make an animal sound.

I’m still thinking about the possibility of eye gaze devices to allow her to make choices, but for now with the gains in fine motor she is making I don’t want to stop her using switches.

Since she hit the beach ball on her own, this little girl has come a long way. Her favorite toy is still the beach ball, which we have now hung on a piece of elastic from the ceiling so that she can lay down or sit in a tumbleform chair or bean bag and hit it on her own. This was extremely helpful because it allows her to play on her own like her brothers. She loves this game, and will sit for 20 minutes at a time laughing hysterically at herself for touching a ball. After she got used to touching the beach ball and playing with it, we introduced a switch to her during meal time. We used a Big Mac, and we recorded the word, “more” on it so that when her hand hit the easy touch button that it would say the word, “more”. Giving her control over when she gets a bite was a great step, and the concept was one that she picked up on extremely quickly. After one day of introducing the concept to her, she understood and would use the switch appropriately during meal time to ask for more food. Granted, meal time now takes an hour or more instead of thirty minutes, but she is learning to communicate for herself when she wants a bite. The dream is that one day she will be able to use a switch board with multiple switches to communicate.

She didn’t mind when her mom left her, and rarely cried the whole week. A few volunteers did a juggling act for her, and she laughed and smiled for about 10 minutes. She seemed to like to be entertained. She didn’t like to sit at the table for snacktime, but she didn’t mind sitting at it during lunchtime at all. She doesn’t touch toys for more than a second, and that is only when she is handed a toy. She would never reach out and choose to play with something. She does a lot of hand-wringing, but I’m told it’s not as much as children with Rett’s typically do. She eats pureed foods, and drinks everything from a bottle. She has no speech sounds, but she laughs and is vocal when she cries. When she gets really mad and cries, she will bite her right wrist. When she is held, she stares at the face of the person who is holding her. If they aren’t looking at her, she will stare at the side of their head. One of the days she scared herself by falling over (after rocking in her chair), and I took her outside to swing. This really calmed her down, but it was interesting because she stared into my eyes the whole time. I want to know why she does that, and why she enjoys swinging so much. I don’t think she shows much affection to her parents, and she doesn’t play or interact with anyone.

GOALS:
If I was to write the goals for her, I think I would start with some sensory issues. She doesn’t like to touch things, and I think if she could learn to hold things that it would open a window to start working with many other self help goals. She would be able to start learning to feed herself, play with a toy, reach out and touch her mom, etc. I would also start incorporating more texture into her diet, so she slowly could develop her swallowing skills and eventually be able to eat food that her mom wouldn’t have to puree. Next week we are immediately switching to a different type of cup, that is similar to a bottle, but we want to slowly work away from that design so she can eventually drink from a regular cup. I think it’s great that she looks at faces, and I think imitation might be a good thing to work with her on. This could open communication a little more, strengthen muscles in her face and mouth, create a starting point for teaching her to follow simple directions, and teach her to play. The wrist-biting can be helped by giving her an armband, and this has already shown a positive effect. I think she doesn’t like sitting at the table during snacktime for a few different reasons, but by making her sit there a few more minutes every day, she will learn that it is part of the classroom routine, and eventually be alright with it. This isn’t high on my list though, because I feel like it’s not as important that a three year old sits at a table than it is that she does most of the other things addressed in the goals.