I thank all of you who responded to my last update. Your suggestions, thoughts, and questions were so helpful. Sometimes questions might seem quite obvious and one would assume I had asked them of myself, but that is not always the case. I haven’t yet thought through my answers specifically, but I love the question from one of my friends about what I want Sarah to get from school. I think sometimes what I want for her to get from life can take over my thinking so I don’t break things down into smaller pieces. School is just one piece. I have one visit scheduled (weather permitting) and the other will be scheduled soon. I feel much better knowing my next few steps: Visit, discuss, clarify what we want Sarah to get from school.
Among many thoughtful, loving, wonderful responses, I received these beautiful, amazing words from my step-mom: “What if you knew that The Extraordinary Miracle has already happened? That MANY of them have been happening? And more are continuing to happen? That what Sarah has already achieved in her short life is a miracle? Would you feel a huge high? A sense of I am good at this? Could you sit back, relax, and calmly soak in the radiance of success? I ask this because… Sarah’s progress does seem to me like a miracle. We have no ‘benchmark’ that is appropriate for Sarah, thus one could say she is “behind” the “typical” child… or, another perspective is that she growing her skills by (extra-ordinary-sarah-)leaps and (extra-ordinary-sarah-) bounds at fantastic sarah-speed.”
Anyway, thank you all again. You really do make a difference and are helping me think clearly, helping me navigate the path with as much joy as possible. You help me regain my footing when I slip.
This past week was very quiet and the girls didn’t set foot outside. It has been very cold and they both had colds. Some of our volunteers were also sick. For all sorts of reasons, we didn’t have a normal week. We did very little official SR and very little official brain building. We did lots of snuggling and resting and watching movies. The girls and I watched all of Monsters, Inc. I was impressed by their ability to stick with it the whole time and I think it was important that I was with them and talking through some of the parts to make it easier to understand. They also loved it when I would crack up. I had forgotten how funny it is!
I have moments of noticing how extraordinarily wonderful it is to live with two small people. In these moments I am not thinking about what they will be like when they grow up, I am just really noticing who they are right now and how awesome and adorable it is. Sure, there are times I feel infuriated and frustrated, but the flip side is being so in love with their dear faces, voices, bodies, and spunky selves that I am the richest I could ever be and I am the luckiest person in world. One of my current favorite things is when Amy tells something to Sarah and ends by saying her name, in a way that clearly includes a comma. “I get to eat a banana but you don’t get to eat a banana, Hara.” (Amy doesn’t say “s” yet so Sarah is Hara.) There is a small pause before “Hara” and then the name is elongated just a tiny bit.
I am experimenting with a new approach to Sarah’s yelling. I was inspired by another Son-Rise mom who mentioned in her blog that an undesired behavior went away after a week of her stopping whatever she was doing when the behavior happened. I realized that I hadn’t been fully doing that in response to Sarah’s yelling. If nothing else, it is helping me feel more calm. It feels like training myself to have a Pavlovian response because at first I was still responding and then half-way through my response I would realize that I was engaged. As the days go on, I am finding it easier not to respond but just freeze. I still look at her, but I wait to say or do anything more until she has regained a normal speaking voice or demeanor. I am not sure yet if it is changing her behavior, but at least it is changing mine!
Highlights from the week:
Sarah initiated a high 5 with me.
Sarah answered a volunteer’s question about her favorite color. She answered with a list of colors, but it was still the first answer to that question I have ever heard her give. And this was with a new volunteer in her first 30 minutes of being with Sarah! (Yes, we have another volunteer! Yay!!)
Sonia, Sarah, Amy, and I played 3 rounds of the Hat Game. 3 rounds of using up all the cards. Taking turns, acting out the activities! This is a game that I created months ago and it didn’t go anywhere at the time. Recently a volunteer played it a little with Sarah, but this was the first time to try it with 4 players. The game involves a hat filled with little pieces of paper that describe some moment from one of the girls’ favorite books and then there is a question or direction based on the description. For example, “Toad makes delicious cookies. Can you pretend to make cookies?” I am thrilled with how easy and fun it was to play the game and how adaptable it is. I even expanded it while we played, writing out new cards based on our latest batch of favorite books. We can just keep adapting the basic idea as long as we want. It involves taking turns but there is no winning or losing. Just fun and hanging out. It is also really fun to play such a game with other adults as some of the players. Sonia and Carl are creative and funny! What I also love about this game success is that it didn’t succeed at first. It wasn’t that it was a bad game or bad idea, it just wasn’t the right time. Such a good reminder about anything else I might try that seems to flop. Maybe I just need to try again in a few months.
We have teaching boards for a zipper, buttons, and snaps. We realized this week that Sarah can do the zipper and buttons all by herself! (She has been able to do the snaps for a while). Yesterday she zipped up her sweatshirt with only the tiniest bit of help from me!!! Yes, that was my entire sock drawer flying past your window as she knocked all of my socks off. I cannot believe that we are at this point. As with so many skills, she gets to them when she is ready. When she is ready she practices and works at it determinedly. If something seems laughably impossible, then perhaps we just need to wait and then at some point it won’t seem laughably impossible. At some point, we will laugh with surprised delight as we realize what she can do. This is also a great reminder to respect the ism. Isms are repetitive, exclusive behaviors done for Sarah’s own enjoyment where it doesn’t really matter to her if we are there or not and it can feel hard to get a connection. The beauty of the Son-Rise approach is to respect the ism and assume it has value. With some of Sarah’s isms I do not always see the purpose, but with some, such as repeatedly working with the snap, button, zip boards, it is very clear that she is doing the amount of practice that she needs to master something. So our gift to her is to get out of the way, allow the time and space, but be there to help when she asks.
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