April 1

This week we got 10hrs 5min. I had a consultation on Wed with M., a Son-Rise expert, and she had some good ideas that I will implement in terms of potty training. I have scheduled an Outreach with M. for mid-April. An Outreach is where M. will come to our house for 3 days and work with Sarah and observe me, Carl, and our volunteers working with Sarah, and then give us ideas and answer any questions we have. I think this is an amazing opportunity to take our program to the next level. I am feeling slightly daunted about reaching out into the broader community to get more volunteers to increase our weekly times. It felt easier the first time since I was reaching out to local friends and acquaintances. I did have the epiphany that I need not post flyers or things on local facebook groups if I'm not comfortable doing so. At the moment I am letting myself brainstorm the various options of where to connect with more people and what feels the most comfortable. I also realize that doing all of this pushes me somewhat out of my comfort zones and that isn't necessarily a bad thing.

This week I felt more aware of needing to work on increasing Sarah's eye contact and also aware that we are making progress. G., Sarah's speech therapist at home, noted that when Sarah and Amy were coming down the stairs together that Sarah was focusing on the stripes on his shirt and Amy was focusing on his face. While striped shirts are nice, faces are really where we want Sarah to have her focus. L. noted that while Sarah was absorbed in her own thing during some of their time together that she seemed somehow more easily reachable, perhaps more mature in her reachability, if that makes sense.

When Carl worked with her this week they spent some time drawing and practicing drawing circles. Sarah still needs a lot of help with this but it is wonderful that she is wanting to work on it. The next day she then told me she wanted to draw with a pen (this sounded more like "d-ul p-n" so it took a while for me to realize what she meant but then once I gave her pen and paper she asked for help to draw a circle. On one of the pages that Carl had used there was a picture of a stop sign and they had been drawing around it. I will try to print out more pictures of stop signs or other things that would be interesting for her to draw around.

After Sarah's bout with pneumonia she had lost a couple of pounds. Pre-sickness we had thought we no longer needed cyproheptadine. Well, now I will give abundant thanks to the makers of cyproheptadine (also called Periactin). Tuesday was not a great day for eating (to put it mildly) and at dinner that night (just me and the girls) I totally lost my temper and was begging Sarah to eat more. All my old fears and struggles came back in a torrent and even though I knew it was out of proportion with the situation, there it was. So, back to cyproheptadine (also good given allergy season). Her eating improved markedly, including the consumption of an entire donut from Dunkin Donuts during one of our after-school eating drives. I weighed her yesterday and she was back to 31lbs!! And she has a nice belly again and today I felt like I could really start including normal healthy low-calorie options. So in addition to her super juice and super milk and cheesecake today she also had cucumber, grapes, and a slice of turkey.

Sarah's language progress continues to amaze me. Not only does she attempt to repeat almost everything she hears, now she is doing so with 2-3 sounds from the new word. When we were talking about riding on the plane together to see Grandma and Grandpa and Sonia and A., Sarah then said "wash-n-t-n" for Washington, because that is where Sonia and A. live. I said that we lived in Pittsburgh and Sarah said "P-b-g" or some similar but garbled (and earnest) attempt. She also said "Dad f-da" (Dad is in Florida).

Today she saw Carl's red suitcase and was saying "ahn eeoo" (on you). I asked if she was thinking of the big red backpack that she used to ride in. She said yes and then pointed to her shoulder and said "sh-d-r". We brought it up and helped her to wear it. I had to keep holding it because it might weigh as much as she does and she can't stand up with it on or it pulls her backwards. We put babydoll in the backpack and sang "bouncin up and down in my big red backpack" and she grinned and started bouncing up and down. Meanwhile after one of the times that we said "backpack" Amy then said "ba pa." I don't know if she knew what she was saying but it was pretty awesome timing.

When we went for a walk earlier in the week and I asked if Sarah wanted to walk more she said "walk m-or" and then later as we approached home she said (without my asking) "walk s-ome m-or." I could go on and on about all the new things she is saying but I think you might be getting bored. How AMAZING!!!!!!!!!!! In just a few months she has made incredible, astounding progress. I love how much she can get us to understand and how much she understands. (and I know that when she can't get us to understand it is incredibly frustrating for her so she either throws a tantrum or reverts to talking about Dr. K. looking in her ears). I think she wants adults to be her repository as she composes what she is saying, especially if is is new. She waits for me to repeat what she said so that she knows I understand before she adds the next thing.

Music class! We are going to take a break from attending so that we can increase our Sarah-Rise time, but we certainly ended with a bang. (note: when I asked Sarah if she wanted me to sign up for more she said no and when I asked if she wanted to take a break she said "b-ek.") This week when we entered the classroom Sarah took off her shoes and sat criss-cross on the carpet facing the teacher, K. This in and of itself was rather amazing. K. was asking people for their favorite songs and she asked Sarah for hers. Sarah waved and started tapping her legs with her hands the way we do for the hello song. Then she signed song and said "la la la." She was attentive for probably 60 or 70% of the time and didn't attach herself nearly as much to other people's pants as she sometimes does. She danced with K., she clapped, she played with balls and scarves (though not quite as the rest of us were playing with them), she played with instruments (and was in tears over a kerfluffle with another kid over an instrument). She helped blow the lights off and on. After blowing the lights on she stayed near the door by herself and looked slightly pensive or sad. I kept looking at her as we sang the goodbye song, which includes lyrics about giving a hug to your mom or dad or the one who takes care of you. As the song ended she ran over to me, threw her arms around my neck from behind and said "hugga." !!!!!!!!!!!!! Then I said she could give K. a hug too and she promptly did so. This was such a good class that I was fully doubting my decision to take a break, which is why I asked Sarah. The time slot we would want is also full so a break we will take. Also, I think the reason class went so well is because of our Sarah-Rise time, so all the more reason to increase it.