August 25

This week we got 26 hrs, 20 min.

We have fantastic news to share....Carl's sister Sonia will be moving to Pittsburgh in October to help us for the year!!!!!!!!!!!! Hallelujah!! She is fantastic in the playroom and with both girls out of the playroom and with helping our life run more smoothly in general.

Highlights from this week include Sarah attending to my explaining and showing her how to play a small version of a memory game with the matching squares. This only really works when she is eating but she is very attentive during that time. I set up a small game and then I take all the turns. The last time we did this I encouraged her to participate and she did turn over a couple of squares. She is quite the captive audience when she is eating and so we are able to get her to attend to longer explanations of games or longer books. Normally she doesn't really let me read Harold and the Purple Crayon, but she does if she is eating.

N. returned from vacation and was wearing a shirt with a picture of Heinz field that included the Heinz sign, but no other reference to ketchup. Apparently Sarah pointed to it and said "ketchup." Go little Pittsburgh Sarah!

Today when Carl took the girls out for fries at a nearby restaurant that has a large (42") tv, Sarah evidently said "watch football on small tv." I guess she is used to our big projector screen!

During one of my SR playtimes I was lying down and she very clearly said "sit on mom" and proceeded to repeat that several times as she climbed onto me.

When she is talking about animals or sometimes people, Sarah goes through some of her favorite jokes, such as "wad cat" (ride cat), "push cat," "eat cat."

In Amy news, Amy has learned to keep her mouth closed for a kiss and it is perhaps the cutest thing ever as she leans in saying "mmmmm" and then blinks up at me while her lips are pressed against mine. Then if I ask for a hug the soundtrack changes to "aaaahh." If she wants to sing then she says "ooooh." That is also how she refers to shoes.

August 20

Given that this was a week in which daycare was closed, I am pleased to report that we still managed 19 1/2 hours. And that was without any hours on Saturday because we were driving to Delaware to celebrate Sarah's great grandfather's 91st birthday. It was great to see lots of family and it was also good to see how Sarah handled/struggled with some parts of it. It is more and more clear that she can thrive in settings with just one or two other people and she will chatter away almost non-stop, as she did for part of the car ride home today. When we were at my parents' house with my uncle B. on Saturday afternoon then Sarah was quite present and talkative and B. was aware of a big difference compared to when he saw her in December. He said she seemed more like a regular kid in terms of her presence. C. noted that she was more adventurous physically and better at puzzles, and that is compared to just a few months ago. In settings such as the birthday party where there were lots of people in a new setting with appealing doors, she struggled more and ismed more. There were more (and longer) tantrums and tears when she didn't get what she wanted. She also didn't talk much or make as much eye contact and she wanted to go in and out of doors all the time. I send these updates to so many family members and it is fun when they can also notice a difference in person. It can feel disappointing when the setting is such that people probably couldn't tell that there was much of a change.

During the party at one point I started feeling really sad. This was after observing some typical kids and watching Sarah and feeling disappointed at how hard it is sometimes. Thinking back on this moment I think what really brings the sadness is when I feel like Sarah isn't what I want. It isn't actually about her it is about my disconnecting from my love from her. When we had time just the two of us later in the day it felt so good to reconnect. What I am trying to convey is that it isn't about her special needs or challenges that I get sad. What brings the sadness is when I judge my own kid and separate from her. She is my daughter and I don't want to stop loving her even for a second. Our life is what it is right now and if I label it hard then sometimes that can actually make it feel harder. If I don't label it but just keep reaching for loving responses then it is much better. This is also easier when we are in our Sarah-Rise bubble of life, mostly at home and with very few outings or opportunities for comparison. Admittedly, this life can get tiring and challenging and I certainly don't always do it the way I intend. Sometimes I just want to press pause and have a week to catch up on the rest of life and a week to just be me without chasing two children. But I am also so pleased to be able to spend so much time witnessing Sarah and Amy. I have been trying to teach Amy to kiss and it is so beyond adorable when she wrinkles her nose in cackling delight and moves in for a kiss. And it is so precious to hear Sarah quietly, tentatively, eke out her alphabet song. It is the best song I could hear! That plus Amy's new way of singing that consists of "oooooh."

N. has been away on vacation and Sarah has still asked for him daily and at most moments of distress. Luckily when we were at my parents' house, my brother B. was there. She was attached at the pant leg most of the time. This time she could even say that she wanted to touch his pants. The light brown cargo pants were her favorites. When he wore black pants at the birthday party that was not enough to win over the doors or her tears. N. tends to wear cargo shorts. I think there is something Sarah finds comforting or appealing in certain kinds of pants and shorts. As she gets more language perhaps we will gain more understanding about what it is that she likes so much.

I think I didn't used to understand that Sarah gets overwhelmed and that the way she deals is to ism (to "eeee" and watch feet and do doors). Sometimes she is overwhelmed in an excited way which is why I just thought she was excited. But maybe overly excited could be deemed overwhelm. And it is different from her delighted excitement, such as when A. arrives and starts playfully interacting from the moment they see each other. Then she is giggling and her eyes are sparkling. I think there is also a middle ground where she isms with lids or other things because she likes them and that she sometimes likes them so much that can bring out her "eee" and rigid hands and jaw too. At least in the SR room she can also usually make eye contact and interact a bit along with her hyper-excitedness.

Sarah's talking has been continuing to improve in clarity and the number of words she says consistently at a time and the number of things she tries to say. Now when she asks for something (eg. ipad) she also then immediately adds "es" (yes), not even waiting for us to ask in confirmation if she wants the thing.

Our program is in a bit of flux at the moment as we bid farewell to some of our volunteers and begin scheduling some new ones. J. is about to return to college and two more will be studying abroad for the semester. A. is about to move to NYC. Sy. just started. I have one new person to schedule for her first time and two potentials that I have yet to meet. Flux is not my favorite thing to deal with. In general I like things decided yesterday. I think I've relaxed about schedules a bit but I am also eager to get everything settled for the coming year. Once I have my volunteer schedule settled I will see what other help I need to arrange to meet my goals and keep our life running as smoothly as possible. One step at a time.

If you have sadness, may it pass quickly. If you have joy, may it be full. May you find many things to witness with delight.

August 12

This week we got 22 hours and 15 minutes.

Everything is set for Sarah not to attend kindergarten in the fall. There is no school requirement in PA until the age of 6 so I don't need to do any home schooling forms or anything. In Feb/March of next year I will contact the appropriate people who will help with any paperwork and evaluations that need to be done. It is a relief to have spoken to people who know what they are talking about. We have been quite impressed overall with the public schools here and how they take care of their "students with exceptionalities."

On Friday and Saturday Carl, A., S., J., and I all noted an extra burst of language coming from Sarah. We didn't alway know what she was saying but she was quite verbose.

I have been working with her with the alphabet song, pausing more and more often for her to fill in more and more letters. Yesterday she basically sang the whole alphabet by herself (with very little help). This afternoon during my Sarah-Rise time I said it was time to clean up and then sing our abcs. As I was putting the playdough containers back on the shelf I realized that she had started singing. I celebrated her hugely and then requested that we sing it together. I waited for her to start and instead of us doing our usual turn-taking, this time we sang it together. This was a first! We sang a song together!!!

Last night we went camping for the first time in a few years. Sarah was excited to sleep in a tent and overall the trip went well.

We've been experimenting with time-outs, especially when trying to enforce safe behavior around streets. In the past when we had tried time-outs it didn't seem effective or useful. Now it seems that her understanding has increased so it has seemed more effective. Now there can be an actual conversation about what we don't want her to do and why.

When Sarah was getting dressed this morning she was having trouble with one pant leg and Carl said he thought she could get it by herself. She said "push wey ha(r)d" (push very hard). When we were taking a walk in the woods she said that we were going to the castle, which is a candyland reference. I love that she can joke and that her imagination is increasing. When we talk about cats she says "meee" or "meo" and "pur pur."

This week I came up with a new game which we both love. Typewriter kisses. I kiss the length of her arm and then say "ding" and start at the beginning again. After a couple of times she will then be the one to say "ding."

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.