Woohooo! We got 12hrs and 20 min this week! And it was a week where we were traveling at the beginning! A large part of our hours are due to M. being with us for the Outreach. It was absolutely amazing! So helpful!! I learned so much from the Start-Up last summer but there were aspects that I didn’t fully understand and M. clarified them beautifully. It was really wonderful watching her work with Sarah. She was so relaxed about being in the room, so respectful of letting Sarah do what she needed to do (any isming or exclusivity) but when Sarah was reachable and interested, M. was full-on energy and fun and engaging. She played with the underlying assumption that of course Sarah can play games and would want to. M. played with Sarah as if Sarah was a typical kid (but with all the bits of Son-Rise that give Sarah time and encouragement) and would enjoy things that any kid might enjoy, bringing in more imaginative play and the idea of games. These areas are ones where I think I kept waiting for Sarah to show me more signs that she was ready. She is ready, I just need to be modeling it and not expecting that she will necessarily participate in a big way, but I can model a ton of stuff and have her do tiny bits of participation as she is paying attention to the modeling. We are teaching her how to play. M. showed us how to help grow Sarah’s attention span by picking a theme and returning to it throughout the session, looping it in with whatever Sarah brought up or wanted to play with. Picking a theme actually makes it easier to be creative on my end too.
Watching M. continue to come back to her theme reminded me of the way I kept trying to convince Carl’s sister Sonia to move in down the street from us (she lives in Washington state). Anytime anything was said where I could possibly make a reference to the house for rent on our block, I would say “you know, there’s a house…” I was both serious and joking and totally behind my cause, taking breaks and returning to it. A broken record. So that is how I intend to go forward with Sarah. I will be a respectful broken record. I will give her space to do her favorite things but also keep selfishly coming back to me, me, me, tying her favorite subjects into something to do with me or the theme we are playing around. And I hope I can have fun with it the way I was laughing at myself as I kept telling Sonia about the house. I need to let my inner big buffoon out. I know this must come as a shock to all of you that I am a big goof. 🙂
I am super pumped up to go forward and I can also feel daunted because it is easy to raise the bar for myself to somehow need to be as awesome and skilled as M. instantly and be a more informative team leader instantly. Well, I think I need to just go forward as me and do my best. I can’t really do anything other than that anyway.
Twice this weekend when we were going to drive somewhere, Sarah climbed into her seat and almost did her seatbelt independently. She just needed a bit of help. This is a much more focused and helpful thing for her to do than sometimes. She often climbs in but not always so directly and usually needs more help with the belt or I just do it without waiting for her to try.
Eating is going pretty well, thanks once again to cyproheptadine. We had almost been back at pre-pneumonia weight but the travel set us back a bit, as is common for us.
In terms of language, M. made the good point that Sarah may think she is being clear when she says things so the next step for us may be repeating what Sarah actually says and then helping her to be clearer. Right now we often repeat back what we know she intended to say and we say it perfectly so Sarah might not be realizing she didn’t quite hit the mark.
Once again I am bowled over with gratitude for the amazing volunteers giving their time and love and energy to playing with Sarah and playing with Amy so Carl or I can play with Sarah. It is a priceless gift. A deep thank you to those of you helping make this possible and to those cheering us on. It all helps.
Leave a Reply