August 4

This week we decided to defer kindergarten a year (hoping this is possible) and are in the process of either unenrolling Sarah or enrolling her as home schooled. I still need to talk to the appropriate people in the public school system to get all of this settled but I have taken the first steps. I will be running a full-time Sarah-Rise program, aiming for 30-40 hours a week. To that end, with Sonia's help, this week we achieved a record 40 hours!! 18 of those hours were done by me. This was a very helpful experiment to help me see what kind of help I will need to achieve this and what makes sense in our life. I think we can have some days with 8 hours of SR but not 5 days a week. That would be too intense and not leave enough time for Sarah and Amy to play together or for Sarah to be outside. We can have some days like that (as we did this week) but not all of them. We will also continue to get some of our hours on the weekend.

I was very decided about this plan while Carl was wanting time to think about it. Then, when he was on board with the plan and I started making calls, I (predictably) started freaking out. I still think this is the right course of action because what Sarah most needs help with is the ability to pay attention to people and Son-Rise is designed for that in particular. Along the way we will aim to help her with language and school-related skills. Her drawing and pre-writing is already improving. In the past I used to be pleased when we achieved 10 hours of SR in a week. Now with my new plan and this incredible week I realized I was starting to get emotionally tight about things, feeling like I needed to make her a typical kid by the end of this next year. As if it is in my control. When I am too anxious about getting results from her in some way then I am not as fun, loving, or creative about getting those results and it is not as fun (or productive) to be in the room together. So while I want to figure out a schedule and arrange whatever help I need to make this happen for 30-40 hours a week, I also want to remember that it doesn't have to be the same each week and that some is always so much more than none and that she has already progressed beautifully and I believe she will continue to do so. I also know that if I don't do this plan for the year I will always wonder "what if?" and that this is good timing since it is at a transition point anyway.

I also realized that, at least for now, I can do 4 hours of SR myself on some days but not 5 days in a row. I also continue to appreciate the variety and fresh perspective that volunteers bring. It is really important for Sarah to have multiple sources of input and creativity. I have started training two new volunteers and all of my volunteers are fantastically thoughtful and wonderful. Having a child with special needs has really helped me appreciate how wonderful people are and how supported I am. This is a very different life than I ever imagined for myself. On most days I have a steady stream of people coming in and out of my house. Tomorrow I will take Sonia to the airport and Carl doesn't return until the evening and we have no volunteers scheduled and no plans of any kind. This is such a rare thing that I think the house will feel very quiet and the day will probably feel long.

Sarah continues to cook eggs with help. When she is having trouble keeping her hands in a safe place then we tell her to put them on her belly and that seems to work.

We are back to experimenting with being milk-free (we started with Sonia's arrival). I'm not sure if it is making a difference so we will evaluate again when we reintroduce it at some point.

She has incorporated the word "keep" into her vocabulary. When I opened the blinds one morning she told me to "keep dahkar" (keep darker). In the Sarah-Rise room she also now says she wants to keep toys down on the floor instead of clearing them before we get the new toy. I think she learned this word when we were drawing on the white board and I started asking if she wanted to erase the drawing or keep it.

We are still working on her regularly saying "yeah" or "yes" instead of "aya" but she often says it without prompting and readily says it in response to a prompt.

She says many more things, so much so that it feels hard to write it all down. She describes what she sees a lot of the time or tells stories about past occurrences. She likes to talk often about getting a new piece of wood from home depot because her bed broke. Sometimes she suddenly says something out of context because it is something she can say and get a conversation going. This is sometimes first thing in the morning or at night before bed or after a particularly connected bit of time in the Sarah-Rise room (as if she needs to revert to her language comfort zone).

Within this last week I did lots of joining in the SR room and then we also had lots of connected times. Yesterday we were interacting for almost the full two hours. Last week we had 30 minutes of me joining her (doing the same thing she is doing) opening and closing lids and zero eye contact. I just keep reminding myself that the joining is the way I can play her game and that then there is a better foundation for asking her to play my game (which doesn't have to be a game, it could be a conversation or following directions or whatever I am wanting her to do).

She often has great attention around the dining room table, making eye contact with multiple people easily and sustainably. This has been the case for a while but I know it wasn't always that way in the past.