15 hours! And I fully expect us to have big weeks from here on for most of the summer. We have some new volunteers, some regular and some to fill in when they can. I am also now going to take Amy to daycare some mornings and get an extra couple of hours with Sarah. On our best weeks this will be an additional 6 hours that I get with her.
School is done for the summer. This is sad because we will miss the great people and it is exciting that now we can get even more SR time.
I have recently reintroduced gluten items into Sarah's diet. Just a few. So far no notable changes but I didn't feel that removing it really did anything of note either. It will certainly be easier if we can include it. My new food goal is to make more real food for all of us more of the time. This will take more time but I think it is important. For that reason though I'm not planning on changing anything else major at the moment. One food project at a time. I am still limiting sugar in the second half of the day but I'm not ready to do anything else drastic like cutting dairy. Just more real food more often.
Sarah had a vision evaluation this past week and the great news is that Sarah's eyes seem to be in good shape. All of the traditional eye doctors had also said this over the years but this person was looking at a slightly broader picture, I think. Or at any rate, I liked her and the experience better.
In the playroom Sarah has rediscovered her love of ribbons. We have brightly colored ribbons that can be worn on the wrist, though that is not what Sarah likes to do with them. She likes to put them around her neck so they hang down and she can see them. This seems to be an exclusive activity except she readily accepted my help to put them on. Then I would ask if she wanted them on her elbow or nose or some other place. She would say no and then I would help her say "on my neck." She is clearly so pleased with herself when she can say something and when I celebrate her hugely for it. When she first wanted to play with the ribbons I think she doubted her ability to say the word "ribbon." She asked to be picked up so she could get the box from the shelf. I picked her up but stayed back in the middle of the room and kept telling her I knew she could tell me with words. And she did! It was rough but I got it and she was so pleased.
I think her eye contact is improving. It is hard for me to tell objectively since I am with her so much but I feel like there are times when I come in the room after a volunteer or Carl has been with her and her look at me when I come in is so present and connected it is like a jolt of energy. It is that way a lot around the house or when I am in the room with her, but, as I have mentioned, if I am ever surprised by something then I figure it must be different in some way. Her grandmother N. and our Amy-watching volunteer D. have also commented on Sarah's improved eye contact. Yesterday Sarah wanted to swing on our neighbor's swing and Carl said she had to go say hi to the neighbor so they could ask. I happened to return from grocery shopping in time to see Sarah look at our neighbor from across the street, wave, and say "hi." I don't think I have ever seen such a beautiful and connected hello from her. It looked so normal.
I certainly still have many times outside the SR room where I lose my temper or am grumpy or what have you. But I am also starting to really get it that at least in the playroom that is my time to be in love with Sarah and to love everything she does and want to connect for the sake of love rather than needing her to change. And when she is open to it I want to use each precious minute to go for the gold of teaching her to play using imagination or play a game the way it is meant to be played or speak clearly. I need to go for it like Amy goes for things, not worrying if I will fall (eg Sarah might not like it) and just keep trying. The more I focus on what I can do to help Sarah the most, the faster the time goes. I write this after having an excellent 2 hours this morning. We'll see if I can maintain it for the next 2 hours today. :)
I am again feeling deeply moved by the help and support given to us in this venture to help this marvelous girl. Thank you all so very much.
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