July 8

We had our biggest week ever: 19 hours!  This included 2 days of Megan being here for the Outreach (my week tally is from Sun-Sat).

I forgot to mention a highlight from 2 weeks ago. Grammy and Granddad sent the girls a Cozy Coupe (little yellow and red car they can drive by moving their feet; this is the best selling car in America) and it had to be assembled. Carl did so with help (true help!) from Sarah. The girls have then been getting lots of practice with sharing and we get lots of practice enforcing the sharing.

Highlights from this past week include visiting a friend from Boston at her parents’ house outside Pittsburgh. When we arrived, 2 boys Sarah’s age were sitting in the kitchen with their grandmother playing Othello. Sarah went in (after we said no more door play) and sat down next to them. I was anticipating some isming on the boys’ shorts or with the game pieces. Neither occurred. With the help of the grandmother Sarah put a couple of pieces on the board. She was quiet and calmly attentive. This was a beautiful, “normal” (but not for us!) moment.

Friday night we went to an outdoor concert briefly before bedtime. We were sitting on blankets with friends and the piece of music ended. The adults kept talking while Sarah, attentive, clapped.

I had recently been despairing regarding the shape sorter toy that we have (blue and red ball with holes for the plastic shapes to go in). I was feeling like Sarah was at basically the same level as Amy of still needing me to find the appropriate hole. Then in a moment of me being blessedly unhelpful, Sarah picked up a piece, turned the ball, found the right hole and put the piece in. She did this 5 times! Sometimes she tried the wrong hole but then she figured it out on her own. I was stunned and thrilled. Sometimes I just have to get out of her way! It is so easy for me to make assumptions about her lack of ability even as I am hoping to go for the gold in terms of her possible ability.

I continue to reduce her dairy and sugar intake but we have been wondering if some of the occasional bedtime manic energy that she has might be due less to sugar and more to having an empty belly because she didn’t eat much when not given her preferred items. This will take more observation and maybe there is no explanation. So often bedtimes are no problem and then maybe once or twice a week of late they have been hard. Maybe it is pre-poop. This is another supposition that will require more observation. Last night she was manic and was saying she wanted to eat. I tried a trick a friend suggested of offering a banana (something she likes but it isn’t always a favorite food). She snarfed the entire thing. And then was still wound up. Tonight she had a full belly but may also have been tired because of not getting enough sleep the previous night and she now got the cold that Amy has been dealing with.

We had a super awesome helpful Outreach with Megan Simpson!!!! I cannot stress enough how helpful it is. There are some things that I can’t see because I am so close to it all, such as how much Sarah has progressed in some ways since April when Megan was last here. We have achieved a 10 minute attention span!! Better eye contact, less isming (exclusivity), more talking. Some of these I knew but it is still helpful to have a professional,  who is really aware of these things and who doesn’t see Sarah as often as we do, give her opinion. We are now keeping some of our original goals, such as helping Sarah with the clarity of her language, and we are adding new goals such as helping her participate in games with rules and turn taking in the way the games are meant to be played. I also understand better that just because we have that as a goal doesn’t mean I go in and try to get that in full the next time I go in the SR room. It means that that is my vision for the future and what I am building towards, all the while being fun and engaging so that there is a reason for S to want to play games or take turns. We are also going to increase modeling imagination play as well as friendship skills (saying hi and bye, keeping her pants on). And we will work on school skills (tracing, matching, drawing). This is when we as adults use our thinking to see the big picture and find games that loop these concepts in. We are trying to be the equivalent of a Mo Willems book as opposed to a Dick and Jane book, no offense intended to the D and J books but they are slightly dry compared to the brilliance of Mo who still has very simple words and concepts but makes a fabulous story. Our goal for her attention span is now 25 minutes. I have gotten this a couple of times recently so we are already on our way. On the one hand going in the playroom and doing our bumbling best is awesome and so much better than nothing. On the other hand, there is such an art to using our time with Sarah as effectively as possible. Megan is an artist of play and is helping us to become better artists.

To conclude, here are Sarah’s Rules to Live By (statements she makes frequently):
Don’t fall in the hole
Don’t pinch your finger in weights
Don’t get bubbles in your eyes
Don’t bump your head on the table
Don’t fall down the stairs

With any of these she then may say with her seemingly slightly southern accent for some words “oush piece ice hrt lot go hobital” (Ouch piece ice hurt lot go hospital).