July 30

This week we clocked 26 hours and 45 minutes. An all time record!!

As I mentioned before, whenever I despair Sarah always does something to show me hope. This has been an amazing week. At her own request Sarah now cooks scrambled eggs daily, sometimes just for herself and Amy and sometimes for 4 people! She helped cook a soup that I made (though she didn’t eat it). After cooking her eggs she routinely gets her own fork, carries her bowl to the table, and goes back to the spice cabinet to get the salt shaker. In the past when people would suggest having kids help with cooking or cleaning up after a meal I always thought that was a ridiculous notion. And now we are at that point! I haven’t yet had her clean up but she helps clean up her toys in the Sarah-Rise room sometimes so I think meal clean-up can come next.

I have tackled the electronic form for the team to fill out and I am super excited about it. So far I am the only one to use it but I will introduce it to the team this week. It will make it easy to track our goals and what techniques work well to further those goals. It will also allow us to really track her language progress, which words are spontaneous and which are requested and how they sound in either case. What I really love is my sense of annoyance with needing to fill out all of the different words she says…. because there are so many!!! If Sarah-Rise has given us nothing else, it has given us a language explosion. And I know it has given us so much more too. The other thing the form will help with is pointing out the areas where Sarah needs help, since the form is based on the Son-Rise developmental model. I realized this week that she usually only cries when she wants to leave the room or when she wants a different person with her (usually volunteer N.). I started not getting the games down in the customary way but instead just getting out a few of the items from a box. Whew! Did that get her whining revved up! So now I see we need to stop being quite so accommodating as we bring things down. We will get her what she wants but we want to elicit a calm use of language on the way to getting what she wants.

Sarah has more clear words overall and especially when I request that she practice a word she does an excellent job trying and many times says words perfectly. A few perfect words from the week: (volunteer) N., yellow, marker. I am so proud of Sarah for how much she is willing to practice words. It helps that she finds words, or my face or voice when I say them, funny. Today she asked for markers and we practiced for a good 5 minutes before I got them. I only got one perfect rendition of the word from her but we were laughing and connected and enjoying our time of practicing this word together.

She continues to ask that “N., come in” several times a day. We have written many letters to him. Writing letters and drawing pictures seem to really get her attention.

The part that makes me teary about this week is that Sarah drew her first picture. At least, to my knowledge, this was the first time she conveyed that she was putting on paper a vision that she had in her head. After we wrote the letter to N. I gave her the paper and pencil and just let her draw. I didn’t say anything or do anything except pay attention. She drew some arcs and scribbles. Then she made lots of dots and short hash marks. Then she said, “wain” (rain). I wanted to clarify so I asked if she was drawing rain. She said aya. Then I asked if the scribbles were clouds. She replied “sigh” (sky).

Thanks to A. singing with the pizza game “when the moon hits your eye like a big pizza pie, that’s amore” we now have a great attention getter and tool for building in anything. She loves this song and cracks up when we sing it, making delighted eye contact. If we pause she will fill in almost all of the words. I then take the song and vary it depending on what we are playing with (eg. “when the cake hits your belly like  a big piece of cake that is silly” or “when the playdough lid hits the windowsill like a big playdough lid that’s amore” or “when I give you lots of tickles and you give me lots of giggles that’s amore.”)

When Sarah’s volunteers show up she lights up and heads upstairs, starting to play even before reaching the SR room. She frequently references A.’s suspenders and the game they play with them (she pulls them, he leans over so she tips back and he makes an “aaah” sound, which she echoes when talking about the play).
When N. finished his time with Sarah on Thursday she spontaneously gave him a real hug, not a chin-press or shorts-stimming hug, but a real hug. Then a couple of hours later when G. showed up she looked up and said “ha” (hi) before he had said anything. Then she headed upstairs and told him to come up, waiting for him part of the way up and then dashing off with glee for her bedroom (where they played with quilts on the car bed).

We are fortunate to have Carl’s sister Sonia visiting for a couple of weeks so that makes it easier to get in extra SR time. Without us saying anything Sarah progressed to a better pronunciation of Sonia’s name. She used to say “S-oh-a” and now she says “Sona.” Sonia noticed (since she last saw Sarah in April) a dramatic improvement in Sarah’s eye contact, the clarity of her language, the amount of her language, and how nice she is to Amy and to others. She used to hit Amy when she was mad at me or sometimes would hit me or Sonia. Now she doesn’t. In fact, Amy is now the one to push Sarah and give attack hugs, which Sarah tolerates as if it is a minor nuisance.

The more time I spend in the Sarah-Rise room the easier it gets and the faster the time goes. I feel like I am also really starting to understand and appreciate joining. This is when she is exclusive so we then do the same thing she is doing a few feet away, either with part of the same toy or something similar. What I am realizing is that if she is exclusive and I try to draw her out with something that isn’t joining it often doesn’t hook her attention. But when I join then she really starts paying attention to what I am doing. Sometimes I can build and sometimes builds don’t work but we stay connected and she is really watching me. That is the beauty of it. There have been studies that show that when parents join their children then those children spend more time looking at the parent in general, not just at that time. And the more Sarah looks at us all the more she will learn. It makes so much sense. If I am watching my favorite tv show and you come over and tell me I should come watch your show instead I will probably ignore you. But if you sit and watch my show and love it too then I will be more apt to trust your recommendation of what to watch next. So when I open and close a lid for half an hour I am watching Sarah’s show. Then when I suggest writing a letter to Noah, she is willing to watch my show.

What did I envision when I wanted to have kids? I wanted to have a wonderful and loving connection. I wanted to be amazed and delighted by my kids. I have that and I am so grateful.

Thanks again to all of our volunteers giving their time to help this venture go forth. This is a remarkable journey.