October 30

When I dropped Sarah off at school one morning I saw an eighth grade girl bend down to make smiling, welcoming eye contact while reaching out her hands to greet Sarah. I hadn’t witnessed that before and my heart just melted that these students have embraced Sarah so literally and figuratively. 

This week Carl and I had an IEP meeting with Sarah’s main teacher and the program director. I feel so good about Sarah’s school and how all of the grown-ups seem to truly appreciate her.  I feel like there is thoughtful creative care being given to Sarah. They said they have already seen progress since the beginning of school. And Sarah’s word recognition was noted as impressive! YES!! 

That said, IEP meetings are interesting emotional affairs because I compare Sarah to “normal” more than I usually do. When I stay with only comparing Sarah to Sarah then I continue to be amazed at how thrivingly bright and incredible she is. When I compare her to where I think she maybe should be or to Amy or neurotypical peers then I can go down a sad and sometimes fearful road, guilt-ridden that I should have somehow done morebetter. That should really be a word. Morebetter. It also feels strange to move back into regular parent mode instead of Sarah-Rise Team Leader mode. One could say I am still the team leader in the way that parents maybe always are, but I am no longer the one running the meeting, setting the goals, and answering questions. I am still contributing, but it is different. Part of me wants to get my empowered, enthused team-leader self back in action and the other part of me is so glad that self can just go take a nap. 

Amy is doing beautifully in school. She is learning things so spongefully, quickly, and delightedly. I do not have to work at it a dang bit. I will take that and run with it. Or rather, not run with it, because I don’t have to!

Tuesday morning Amy was given a hall pass to go see the nurse to get weighed and measured. When did she become such a grown up as to go off on her own with a hall pass to a place where I don’t even know where it is???

In general, Amy has been doing a beautiful job of assisting Sarah with small easy conversations, which is one of our goals for Sarah as she learns to interact more with peers. This is all Amy’s idea of play. Amy will try engaging Sarah in a back and forth discussion regarding their favorite colors or other favorite things. She will tell Sarah what to say if Sarah is silent. While normally Amy’s attempts to control Sarah don’t work and are not my favorite, in this case it seems to work wonderfully.

Last weekend we went to a Halloween party. The girls were clamoring to go as soon as we got up in the morning so it was rather a long wait until 6:30pm. That gave Carl time to make my new BFG shoes. He took some of his old shoes and attached blocks of wood to them. They are much easier to walk in than the 5” heels I used the last time I wore the costume, but they still take some work. They are heavy! They are roughly 4.5 lbs for each shoe. Anyway, the girls did wonderfully at the party and we let them stay up way past their bedtime. When I finally tucked them into bed Amy said, “Mom, I love you. And I love Sarah. I really really really really really like Sarah a lot. I love her. She is the one I love the best.”  Ok, melt my heart now. 

Friday night we went to another Halloween party and this one involved a lot of walking. People wearing normal shoes may not have noticed that there was a lot of walking. And that there were stairs! Have I mentioned that my shoes were heavy?? The sacrifices we must make for art!

Towards the end of my SR time on Thursday Sarah asked how much time was left. I checked. Three minutes. She was already on my lap and we were facing the mirror. I threw my arms around her and said, “we only have 3 minutes to snuggle!” I hugged her and kissed her enthusiastically while she laughed. Then I paused. She repeated that we only had three minutes to snuggle, although you probably wouldn’t have understood a word because she was instantly in her super excited speedy speaking mode where all sounds blur together. We had a wonderful three minutes.

When we returned from gymnastics yesterday Amy got hurt a bit as she exited the car. I sat on the front steps with Amy on my lap. Then Sarah came over and sat on me too and said we only had three minutes to snuggle. I knew what that meant! Exuberant snuggles for all! I loved this moment for itself and even more for the contrast with the moments just prior when I had been feeling annoyed at my children and annoyed at how injury prone Amy is. When I first sat with Amy I reminded myself to just be as present as possible because usually in the present moment everything is actually ok. I love how being so present allowed me to let go of my anger and then led to that amazing snuggle moment. 

I have been focusing more on my left side. My left side is never the problem and never complains but that means I tend to ignore it. What if that is part of the problem? I am figuring that I just need to shake up whatever has been an unexamined habit, such as always carrying bags on my left arm. Maybe paying more attention to my left side can give my right side more slack to release some tension. Everyone once in a miracle moment I also have the image of responding to the girls in such a way as to give them more slack when they are struggling. Often I respond to whining and screaming with my own grumpiness. This week I have had at least two moments of knowing that their upsets were probably due to overload or hunger and I have been able to cleanly respond with love, giving them slack instead of adding to their tension. One specific moment was when we got back from the Halloween party on Friday and Sarah was screaming about not wanting to get out of the car. I asked if she was overloaded from the party. She said yes and allowed me to easily scoop her into my arms. I love how body learning helps me so much with parent learning and vice versa.

Lots of love to all of you. I hope you know that you are already wonderfulbest.