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.
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