January 22

This past week we again totaled 7 hrs and 40 min of official Sarah-Rise time.

I had decided that one of our goals would be modeling nodding yes and shaking no, encouraging her to do the same. Monday morning Sarah shook her head “no” after I prompted her that she could say “no” instead of yelling “la la la.” At first I didn’t realize what I was seeing and I was going to prompt her to speak. Then I realized she had just done a new thing (as far as I know) and I was beside myself with celebrating. She was pleased with my celebrating too. On Tues she nodded yes during her time with L. (one of our fabulous volunteers). Each move has only occurred once so far but it is not something I remember to model very often.

Sarah’s language has progressed notably. She has increased the words she can say more fully : nose, eat, beginning (buh-g-nn), bar, pants (p-ts), wire. The number of words she strings together has also increased a bit, or the occurrence of multi-word phrases has increased. She often tells us where she pees or poops (potty or diaper). And she indicates where she wants things, such as on the sofa or the table.

I watched a bit of a talk by Raun Kaufman and was reminded about some basics that I had forgotten so it is good to feel recharged remotivated. I had forgotten that joining an ism (a repetitive behavior where someone is rather unreachable and doesn’t really make eye contact) is only for during the isming. If Sarah is reachable for a connection, as she so often is, then we go for building language and inspiring growth with whatever skills we want to work on. If she doesn’t want to, then that is totally fine, but we can go for the gold in what we ask for. With that in mind I decided to start working on puzzles more, both in the Sarah-Rise room and in the family room with Amy around too. Puzzles have never been of huge interest to S and have often been a struggle and haven’t really been fun for me either. I decided to have fun with the trying and to celebrate the tiniest participation on Sarah’s part. The first time she put the turtle piece in the big three piece puzzle (moving it just a tiny bit on her own after I did hand-over-hand to line it up) I cheered and hugged and tickled her and raised her hand saying “I did the turtle piece! I did, that was me!” (as if it was her saying it). She then immediately took the piece out and put it back in. I repeated the celebration and have done so with every attempt. Then we worked on the alphabet puzzle in the Sarah-Rise room and I celebrated (though not quite as hugely) with each piece and she stayed with it and returned to it much more than I would have expected. She struggles a lot with how to manipulate a piece to make it fit and when I say to turn it she often picks the piece up and flips it over and around several times as if this will magically help. So first we need to bring a love of working with the puzzle and then with practice hopefully she will start improving her hand-eye-brain coordination.

I don’t know when this change occurred but I realized that we used to have huge issues with Sarah hitting Amy or us and also pressing her chin into Amy (strong affection) and both of those hardly ever happen.  Funny how when things go the way one wants it is easy to not notice because then things are as they “should” be (whatever that really means).

We had our first team meeting this past Tues night and I feel so blessed by our team of volunteers. This was a meeting with the people going in the room with Sarah. It went very well and I realized the importance of being a team and coming together collectively. I also feel totally blessed by the supportive volunteers watching Amy so I get time with S. It is so nice to notice the village helping us with our vision.

I have scheduled some consultations with W., one of the Son-Rise experts, and my first one is in early Feb. I’m nervous and excited. With so much of this I feel like I am bumbling and fumbling along doing a very imperfect job, but what matters is to keep going and doing my best and that that is so much more than doing nothing.

As I have mentioned before, getting time in the room with Sarah makes me enjoy parenting so much more. I was getting grumpy this morning and realized that I hadn’t had much official time one-on-one with S in a couple of days. We then went in and had 2 great hours together with very little tantruming or screaming and come to think of it, perhaps no isming at all.

Thank you all for your support. Even if you aren’t here in Pittsburgh it means so much to know you are here in spirit cheering us on. And an extra huge thanks to my wonderful volunteers and to my amazing husband Carl who has supported this endeavor every step of the way. And to Amy for being sunshiny so often and to Sarah for being her deeply amazing persevering self.