Yesterday we had a wonderful party for Sarah. She was perhaps the most present and connected she has ever been, as compared to past birthday parties. She greeted most of her guests, often by name and with some eye contact. She opened presents upon arrival and sometimes said "thank you" when gently coached. She started the singing when her cake was on the way (and our whole group sounded amazing when singing). She snarfed her pizza and cake. And then after a couple hours of festivities, she headed upstairs to nap!
Carl and I talked until the wee hours last night, discussing our Sarah-Rise program and school and our next steps, and everything. Carl is the most wonderful individual I can imagine being married to. There are times that my girls say or do something that I find so surprisingly endearing I must give them a kiss immediately or I pause with a smile and feel that I will burst with love. Carl is similarly wonderful in all the small ways of being himself, I just don't always acknowledge it. I love how easily we can talk about our lives and our decisions and how supported I feel with all of everything. Anywho... what we realized is that, while our program is flowing along beautifully, we haven't been feeling the power and oomph behind it that we used to feel. And we want that oomph back! So we are going to increase our time in the room.
In the early days when Sarah had minimal language and much less eye contact, it was very easy to work towards clear goals and it was easy to notice each tiny step of progress. Now that Sarah has so much language and so much eye contact, our goals and progress don't always seem so clearly measurable. Our collective team used to get 5-8 hours a day in the SR room and that has dropped lately for all sorts of reasons. Last night I realized that even if I'm not in the SR room, it is still important to set aside official time where I won't be distracted by other things. That is possible, but the room makes it so much easier so I am going to do actual room time at least 5 days a week. There is a magic that can happen there in the quiet space that I don't get elsewhere. I can focus in a different way, just as Sarah can.
We have a team meeting next weekend and I'm excited to focus our team more powerfully and get new ideas for goals and games. Every time I observe my volunteers, especially the new ones, I am reminded about why it is important to have volunteers. Yesterday, in a session with our newest volunteer, Sarah said "make a crib." For those of us who have been in the room a lot, we know that this means Sarah wants to actually build a crib out of some materials in the room. So I always do. The new volunteer didn't know this so she thought maybe Sarah wanted to draw one, since they had been drawing anyway. Sarah went with it! This is central flexibility! Sarah already has the peripheral flexibility where she usually doesn't mind if we wear a hat or sing along with an activity. But changing the central activity within her chosen theme doesn't always happen. And here it did because of having a new volunteer who didn't make the same assumptions I might make. This is a good reminder for me to not always do what I think Sarah means, even if it is the umpteenth time she has requested a certain thing. Maybe I can find a new way to play an old game and shake things up for the both of us.
Sarah's lastest favorite conversation with me involves climbing onto my lap and saying, "Mom sad sometimes. Get tissue. Tears go in ears. Snuggle with me, help to feel better." While the pronouns sometimes get confused, she is mainly clear. She is referencing what happened a couple of days ago when I felt sad and, instead of rallying through it, I decided to just slump into it. I told the girls I was feeling sad and I had a good cry on the kitchen floor while both girls snuggled into me for the duration. In some ways this felt like the best testament that I have been doing an ok job parenting, if they could know that sometimes if someone is sad, a great thing to do is just be with them until they feel better. And then I did feel better and we had a great dinner.
On Monday, Carl and Sonia and I visited a life skills class, which is just for kids with special needs. I think it is a very good option and I will take Sarah for a visit to give us more information about the class and about Sarah. Sometimes I can want so much for Sarah to be a certain way (eg, passing for a typical 4 year old) that I fight noticing where she actually is (not passing for a typical 4 year old). That doesn't mean we won't get there or that anything is wrong. Also, I think a huge part of the success of our program so far has been because of meeting Sarah precisely where she is instead of asking her to meet us where someone (maybe me) thinks she should be.
Carl has a pull-up bar and a strap that can assist with the pull-up if a person can't quite do it independently. After lots of practice with the assistant strap, then, in theory, a person could do it by themselves. Last night I realized that our Sarah-Rise program is the assistant strap for the pull-up bar of various life skills. The more we amp up our support while still asking for a clear goal, the more Sarah can develop those skill muscles and then we can reduce the amount of support. For example, Sarah still has trouble with maintaining eye contact while making a request. When working on this goal, I become more dynamic in my face, voice, and body usage. I lie down on the floor so she can't miss my eyes. I point to my eyes. I celebrate hugely when she does look at me for the duration of a request. As she has an easier time making and maintaining eye contact, then I will easily reduce my responses to being those of a more normal interaction. And so it goes.
While I think I still get base hits even when I am in a bit of a slumped blah, I am ready to go for the home run again. The home run is about my level of presence and dynamic, playful, clarity. Let's do this! Let's envision my sweet 7 year old becoming more easily and powerfully connected, independent, and able to do anything and everything. Let's spend a moment thinking about her endearing, stubborn little self and dreaming the world for her. And, while we are on a roll, let's give a moment of holding Amy in the light as well, thanking her for being the most amazing sister Sarah could have.
Thank you all for witnessing and cheering! Team members, thank you for ever and always, for showing up to make a big difference in all of our lives.
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