As usual there were many good things this week and some rough patches. Wed/Thurs I hit a very rough patch personally where I sort of crashed and burned. I felt hopeless and incapable of taking our program to the next level (getting volunteers to fill out evaluations after each session, having group meetings every 2 weeks). I also often find it challenging for a bit after being with typical kids and also after being around other kids with special needs who have a less challenging time than Sarah does. As I have said before, I know in theory I just shouldn't compare, but I do and then I can feel depressed. I also notice a weird correlation with kicking our program up a notch in the intensity with questioning what we are doing in the first place asking all of these fabulous volunteers for their time and putting in so much time of our own. I have a new Amy-watching volunteer (Noah's brother Ari) and Adrian is increasing his SR time to 6 hours a week. My crisis in confidence was wondering if this program is really doing anything (though if anyone else were to question me I would defend it staunchly). I so easily acclimate to Sarah's new abilities that I forget how far we have come. And progress feels slow. We get tiny improvements frequently but overall this is a big mountain to climb.
So I had two sessions of crying in the SR room and being far from the best that I could be. Then I came out of it, thanks in part to just deciding it was really ineffective to be so morose and thanks to reading the latest Christian Science treatment for Sarah and thanks to listening to some Jason Mraz songs ("I won't give up," "I'm Yours," and "Lucky.") His songs can shift my mood dramatically. Why do I not always play them? I don't know. Because when things are easy and going well then I don't think I need to keep doing things to keep them feeling good.
I did write up a short form for people to fill out so we can track language improvement and what games work best for getting language, eye contact, etc and what works best to build out of joining in a way that gets her attention. I think it will be helpful if all of us who work with Sarah pool our resources and share our ideas so we can be more focused in our work. I contacted a friend who has an electronic form for doing this and I will be learning how to use it soon. I still feel daunted about meeting every two weeks. It is very difficult to coordinate so many varied schedules, especially during the summer when so many people have travel at different times. What I need to remember is that even if we don't quite hit that goal we are still doing good work and it is still making a difference (despite my times of doubt I am not willing to not do this). And if we can meet more frequently then all the better.
I have also been trying to clarify my goals for this week since I think having a small set of concrete goals might help us all be focused and notice our progress. So my current small set of goals is:
1. to have Sarah say "yes" clearly instead of "aya" (much as I adore the way she says "aya.")
2. increase attention span (this is what we all are already helping her with beautifully in the various ways of playing and keeping her attention with us when her attention is available; this can include calling her back to a game instead of immediately getting the newly requested item)
3. attend to Candyland in some manner (talking about the box, playing with the box, singing the name of the game, playing with the little people, talking about the pictures on the board, wearing a crown, anything with the cards, making a candylandesque board out of pieces of playdough, writing candyland on the white board and any words that pertain to it, following a path around the room, with the eventual goal of actually playing the game.)
1. to have Sarah say "yes" clearly instead of "aya" (much as I adore the way she says "aya.")
2. increase attention span (this is what we all are already helping her with beautifully in the various ways of playing and keeping her attention with us when her attention is available; this can include calling her back to a game instead of immediately getting the newly requested item)
3. attend to Candyland in some manner (talking about the box, playing with the box, singing the name of the game, playing with the little people, talking about the pictures on the board, wearing a crown, anything with the cards, making a candylandesque board out of pieces of playdough, writing candyland on the white board and any words that pertain to it, following a path around the room, with the eventual goal of actually playing the game.)
As often happens when I get depressed about things with Sarah, she herself then does something to inspire me and show me that she is still growing and learning. This week she started wanting to cook scrambled eggs so she has done so with with my assistance at least 3 times. (pictures below)
Sometimes things don't go according to plan and sometimes that is an unexpected gift. On Friday I had to take Sarah to the daycare where Amy goes while I went to work. When I showed up to get the girls they were playing together on the same play structure, easily sharing the space together. Of course they play together at home but there aren't other kids at home or as many different play areas. So here they were really choosing to be together amicably (which also does not always happen at home; lots of quibbles over toys or even parent laps lately). That touched my heart.
Yesterday Amy was having a hard time going down for a nap; Sarah climbed in Amy's crib and lay down. I asked if Sarah wanted to nap with Amy and Sarah said yes. Amy was still having none of it. Then I asked Sarah if she would like it if Amy shared her room and slept in there. Sarah said yes. Since the crib is too big to fit through the doorways we decided to ask Sarah if she wanted a new big bed and she said yes and started talking about it a lot. We have a frame that has been in my family for a few generations so I was excited that we could now use it. I had worried that Sarah wouldn't want to give up her car bed but she seemed quite eager to switch. When Carl was helping her go to bed last night he asked her where the new bed should go and the conversation went something like this:
Should the new bed go by the window? no
where should it go? on beda beda
on your bed? aya
on top of your car bed? aya
you want the new bed on top of your car bed? aya!
I guess that is an argument for bunk beds
(bunks will eventually come here from Carl's parents, but I want a few good years with her in my old bed first)
Lastly, I would like to extend deep gratitude and appreciation to my uncle and aunt, John and Jane, who have generously funded my Son-Rise training and the phone consultations and the Outreaches and will continue to do so. It is invaluable and priceless support, allowing me to fully follow my dreams for Sarah in the best way I know how.
Really lastly, I have decided that it is ok to have wildly hopeful daydreams about Sarah's future. My current one is of her graduation speech at Swarthmore where she says that Swatties can do anything and that she is proof. We will have our whole families and the whole Sarah-Rise team there and all of us will be laughing and crying and deeply happy. I share this in the hope that happy dreams create good energy and that good energy helps us all and that by aiming high we never know where we might end up. Bears and Samahria were told they had no hope for Raun. They decided to give him all the loving energy and input that they could. He recovered completely from severe autism, graduated from an ivy league college, and is now the CEO of the Autism Treatment Center of America.
Perhaps I can fully accept Sarah for who she is and love her wildly and deeply as I do no matter what and also trust that she has immense potential.
Wishing you all wildly hopeful daydreams (and infrequent times of crashing and burning).
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