February 25

For a long time now I’ve had an image in my head of those heartwarming races where one runner is injured and another runner comes along and helps them finish the race. I feel like Amy is a runner that came from behind and is helping Sarah run the race. There are also many of us coaches and cheerleaders and fans who do our part too, but Amy has a special role in Sarah’s life that can be filled by no one but her. She fills this role by being herself. Part of this is playing and asking Sarah to play. She does this not to help Sarah but because she wants to play with Sarah. Meanwhile, Sarah can play with Amy in ways that are currently too challenging with other peers, but I see that finish line and I believe she will make it.

In general we seem to be in one of those times when I feel as if the air is crackling silently with a quickening of Sarah’s development. I also feel like I have truly changed my thinking and responses about some things. 

Last Sunday the girls played sleep over. I could hear them pretending to be a doctor and patient. Then they did wrestling, which Amy didn’t want so then she left in a huff, reminding me of my own childhood when my friends and I would often say “I’m going home!” only to return a few minutes later. I suggested Tower Crash and they scampered off excitedly to play together. Carl and I were marveling at the long,mostly continuous play. On Friday it happened again. While I was cooking dinner the girls ran off to play sleep over. 

Yesterday Sarah and I were snuggling in my bed. Amy came in and Sarah said, “hey Amy” in greeting. I don’t think I’ve ever heard her do that before.

When Sarah came home on Wednesday I asked what her favorite thing was at school. She said playing with K at recess. In her backpack I found a medal that said “good teamwork.”  It took a few times of asking what that was for but then she said it was for going over a tire and through an obstacle course. Another day I had a note from Sarah’s speech therapist at school. She described the session during which Sarah played a game with other kids. I asked her if she played a game with Ms H. She said yes. I asked what it was and she named what her SLP had written to me. I love getting more information from her about her school days! Part of this is on me to find new things to ask her instead of “how was school?” She certainly seems more ready to supply answers than she used to.

A few weeks ago I forgot to write about when Sarah was putting her name on valentines and wrote “Sah” on one of them. Carl playfully called her out on not writing her full name. Somehow it became a joke with the girls laughing and playing for a long time with shortened versions of their names. What I love about this is that for a misspelled word to be funny you have to have a certain command of language and spelling. Certainly she has known her name for a long time, but still. This feels like something.

Sarah seems to have more flexibility lately about what music we listen to in the car. In the past she would ask for her music all the time and even protest my music. Recently we have driven many times without her requesting anything, listening to the radio with no protest.

Weekday mornings our routine involves me turning on hall lights and then Sarah the Light Bandit gets out of bed to turn them off. Sometimes she says “I’m am the Light Bandit! Run, run, run!” and is happy. Many times she says, “No! No! No! I’m too tired! I want to sleep more!” I have stopped trying to reason with her when she is grumpy. Instead I’ve started turning on the lights way more. Especially when it is really time to get going. I just go from room to room turning on lights and she runs around yelling and turning off the lights. Eventually her upset passes and she is quite awake and then usually gets ready pretty easily.

There have been a couple of times when Sarah has been crying and pauses to say “I’m down in the dumps. I feel blah” (a Frog and Toad reference). What is hilarious is that she even cracks up and laughs a bit when she says this, even though she is legitimately upset and crying. As Carl said, her love of sadness extends even to herself.

A huge change for me has been how I think about Sarah’s never-ending request for her original snail pants. The requests are whiney and sometimes come with upset. She is persistent, despite all of our attempts to make replacements, because the replacements don’t really have the right fabric or print. In the past I would just get so annoyed and mad, wanting her to be done with it. As if flicking a light switch, I realized that her requests and upset are her way of moving through her grief that she can’t have her original beloved snail pants. I can be sympathetic and kind towards grief. I can let her process it as long as she needs. I understand how it can pop up suddenly in the midst of other activities. I don’t feel mad anymore. If anything, I am happy to help her get her sad out. I also wonder if it was this shift in me, giving her more space, that has indirectly led to her increased flexibility about music in the car.

Friday’s swim lesson felt very Son-Risey. Sarah’s teacher has always been wonderful but it just felt extra wonderful this time. The belief in Sarah, the asking over and over and over for her to jump in by herself, the patient waiting with encouragement, the huge cheering when she jumped while holding onto a ring that he also held, the creativity. Of course people have these traits on their own without SR training, but it is the SR training that helps me appreciate their value more, knowing that that is the way I want Sarah to be helped and taught. That is effective. That is the love I’ve aimed to surround Sarah with through all of her volunteers. An extra wonderful moment was during one pre-jump when Sarah was poised on the edge. B was inviting and encouraging her, arms outstretched. Sarah’s arms were outstretched. I was standing with baited breath. And the man swimming laps stopped, watching in anticipation, delight, and belief in Sarah too! 

A little about Amy...Amy wore herself out with amazing swimming during her lesson. It was actually a joint lesson again with just the two of them, but because Amy doesn’t need much hands-on help, B just gave her things to do while he worked with Sarah. Amy was a powerful fish until she got out of the water and then she became a very tired, sad cat. She didn’t even want her lollipop on the way home! I was worried she was getting sick. When we got home our sitter E met us and by the time I left a few minutes later Amy had perked up, snuggling next to E to eat her bedtime snack. 

Amy’s reading ability astounds me. She read a book to me and didn’t need any help. She barely sounds out words ever. She just reads. A lot. The book she read was a mass-market Olivia book, but not the kind by Ian Falconer (which are wonderful, amazing, funny works of art). It had a lot of words!