Tuesday, December 24, 2013

A mind of her own

This is Lucy's "new" dollie. I rescued her from Goodwill a few weeks ago and cleaned her all up, and even crocheted her up a few new frocks as she was scandalously nude, laying there dejectedly at the Goodwill. When Lu and I play babies, she often says, "brush hair" with her Tobii, but she didn't have a doll whose hair could be brushed very well and I had been looking for one for her. This little lady seems to have had an unfortunate experience with a "hairdresser" and has had a bit of a haircut, but it is easy for Lu to brush, and fortunately, always seems to need it. My favorite part about this new dollie, however, is her name. I, uncharacteristically, named her Babette without consulting Lucy at all. After Lu had Babette for about a week, I asked her if she liked her dollie's name to be Babette, and she said, "No". I said, mostly to myself, "How can we figure out how Lu can tell me what she wants this baby's name to be?" And then Lucy navigated to the first page of her PODD on her Tobii and said, "My name is Lucy" and then I said, "Do you want your baby's name to be Lucy too?" And she navigated to the yes/no page and said, "Yes!" So Babette became Baby Lucy. 

Both of those pictures above were done on Lu's Tobii, using her eyes! On the page I have made for her circle time at school there is a button that says, "Illustrator" because when they read books the teacher always asks questions about the parts of the book, including what is on the title page. Well, one day at lunch Lu went to this page and said "Illustrator" several times.  I asked her if she wanted to be an illustrator and she went to the first page of her PODD and said, "Me". Then a few minutes later she went back to illustrator again and said it a few more times and when I asked again if she wanted to be an illustrator she said, "I do"!!! It was so awesome. 

So, I went on a mission to figure out how Lu could do a little drawing on her Tobii. With the help of the Tobii rep for our area, Mary, that helped us get the Tobii in the first place, I figured out how to set up the Tobii so Lu can control the mouse. Then she sent me two programs through Dropbox and told me about a few websites. The first picture is from It is really easy; Lu just uses her eyes to make the lines, and then to change the color you just left click the mouse and a new random color is generated, which is fun because then Lu gets to see all different colors and shades with little effort.  Sometimes she can figure out how to change the color by herself with her eyes, but I don't know how she does it! And the second picture is a program Mary shared with me that has limited colors, but they are fun and easy and it can play music while she draws too.  I added a way for Lu to tell me when she wants to paint and which program she wants to use. It's all a great way for her to be learning how to control the mouse with her eyes so that she will continue to improve.  There are actual adult artists that use the Tobii to create very elaborate artwork, so there is no reason Lu couldn't do the same, and I told her so. 

We talk about what jobs she could or could probably not have when she is grown up, when they come up in conversation. Another occupation we have talked about is being an engineer because Lu seems to be fascinated with bridges. She often goes to a page in her PODD with the word/picture of a bridge and she will activate it over and over again. I asked her if she wanted to read some books about bridges  and she said "yes", and we did and she loved them! I told her that she could use a Tobii and her eyes to design bridges someday. I said she wouldn't be able to actually "build" the bridges herself, or be a bridge painter, but she could definitely design them and then other people could build them. 

I cannot, and will probably never be able to say enough about how essential I believe the Tobii is to improving Lu's quality of life. Sometimes a day goes by where she doesn't say much, and then she tells me that she wants to be an illustrator and that she wants her baby doll to be named after her! I wish every person with complex communication needs who cannot speak or use their hands was just automatically given a Tobii. And I know there are many other visual communication languages like the PODD, but it's the one we know and it's the one that first opened Lu's door to communicating with us, so I have a bit of a soft spot for it. 

I guess in the face of Lu's upcoming procedures, maybe it is important for me to try and just remember how the feeding tube will also greatly improve her quality of life. Who knows what we will do in a day when we don't have to spend it in frustration and tedium trying to get nutrients into her. I'll tell you what we will do, all kinds of super fun stuff! It's funny the stigmas that do and do not pertain to different things, ie: people shy away from medication for mental conditions such as anxiety and depression, but will unhesitatingly take a pill for their heart, thyroid, headache, etc. Lu's Tobii is much more of an obvious and cumbersome piece of equipment that we lug EVERYWHERE with us, than her tiny little tube will be hidden under her shirt, but the look of devastation on peoples faces when they hear she needs one is so obvious, in comparison to the look of interest and enthusiasm for the acquisition of her Tobii. I get it though. However, I look forward to seeing her gain weight back, get some color back, and not need as many little rests throughout the days, as much as I looked forward to communicating with her.  She is pale, and tiny, and takes several little naps a day. She caught a stomach bug on the last day of school before Christmas break and then shared it with me. That is the fifth time she has been sick since the beginning of the school year!  I am looking forward to being able to fill up her belly so we can go somewhere and do something fun, without worrying about how and where she will be able to get a snack in a little bit. Here is one of my all time favorite quotes:

"I wanted a perfect ending. Now I've learned, the hard way, that some poems don't rhyme, and some stories don't have a clear beginning, middle and end.  Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next." 
 -Gilda Radner

I will have plenty of time to share how the procedures have gone, I am sure, while Lu recovers.  hope everyone has a happy holiday of their choosing! 

1 comment:

  1. I love this. Thinking about Lu designing bridges on her Tobii...Awesome. I for one am excited (I'm not sure that's the best word to describe it but...) for her to have her tube put in. I know how you struggle to get her any amount of food and of course she isn't thriving if she isn't getting enough nutrition..through no fault of yours. She will most likely bounce back quickly and you will have all that time for fun. :-) Love you. merry Christmas!