July 27

Grandma and Grandpa were visiting recently and they both noticed huge changes in Sarah's overall language and connection with people. Yay! 

Sarah has been asking for elephant pajamas for forever because she loved the ones that used to be hers and then were Amy's and now fit neither of them. To Sarah's delight, Grandma took her to the fabric store to pick out elephant fabric and sewed some pajamas for her. 

At one point Sarah asked Grandma to go to the potty with her, then Sarah leaned over and kissed Grandma on the head. So sweet! Sarah has loved having Grandpa here too and asks for him every time the door opens.

I am noticing that Sarah comments more on the books we read. Her comments seem a bit more original and observant than sometimes in the past. I also notice that she is stuttering more and I'm not sure why. Maybe she can't keep up with her increased ideas or maybe something else is going on internally. It is mostly that she will get stuck repeating a certain word. For example, "Want to go go go go go go go outside." I am attempting to stay neutral or hopeful about this rather than panicky or annoyed, though those feelings are certainly there sometimes.

Sarah has mastered the trampoline bar flip. She had figured it out a while ago but then hadn't done it for several weeks. Evidently, she and Amy were doing flips side by side yesterday while I was at my Alexander Technique class. 

Sonia and I have started doing joint sessions more often, mainly in an attempt to help Sarah with her "hit Sonia" comments and actions. In the first session, Sarah was very upset after an attempted hit. She wanted to leave and sat on my lap (as I blocked the door) crying for 20 minutes. Then her attention cleared and she snacked and talked to both of us easily. The next session had a little hitting talk but less so and with less upset (however, at the beginning when I told Sarah we were going in the SR room with Sonia she gave a sudden angry look at both of us, as if she was mad at Sonia and mad at me for suggesting such a situation). The third session involved no mention of hitting and no attempt at hitting. We played for 25 minutes with the same toy, with 3 person connection and with evolving ideas that came from Sarah's suggestions. Wow. Totally awesome. We were playing with foam shapes creating food, pretending we had variously shaped whistles, and throwing frisbees.

The newest dynamic that I am working with is Sarah putting every toy or game in her mouth. This means that I put it away and she either screams and cries for several minutes or just protests a little and then repeats with the next game. I realized while talking with Carl that I may have contributed to this seeming interesting because of my own frustration. In the SR room it is easier for me to be calm but firm. Outside the SR room when we are doing an art project and she is attempting to put paint or buttons in her mouth, I definitely get frustrated and yell at her a bit. I think for the time being I will just stop doing art projects until this phase passes. It definitely seems to be a dynamic of her testing me and testing boundaries....I just tried a return to my more relaxed and less firm consequences when Sarah was putting pieces from a matching game in her mouth. I tickled her and told her I knew she knew how to pretend. The moment of her trying to put the pieces in her mouth passed quickly. So maybe that is the way to go in the SR room too. 

The reading for my Alexander Technique class had a paragraph that is perfect for me. From Indirect Procedures by Pedro de Alcantara, "Most people associate their mental conception of power with a certain feeling of tension in the muscles of the body. If the feeling is absent, so will be the perception of power....To play loudly the average pianist....creates tensions within himself, then he fights against these very tensions, believing all the while that he is merely using the force needed to play loudly." This is sooooo good. I think this is probably what I do in most parenting moments where I get tense or angry, I create tension and then fight against it in order to feel powerful and in control and as if I know what I am doing. 

I wish you all easy movement and easy being.

July 19

I went to Zumba Monday night because Carl was well enough to take over with the girls. At one point in class, the instructor said, "Come on, you can do better than that!" In theory she said that to be motivating. Normally she doesn't say stuff like that. I noticed my thought, "you can't talk to me like that! No one can talk to me like that except myself!" What?!

I went to Zumba on Wednesday and had one of my favorite instructors, favorite in part because she seems so kind and joyful. I was reminded how much more motivating joyful encouragement can be.

I have started doing 2 hour sessions with Sarah more regularly. For a variety of reasons I haven't done so  for quite a while. I was still going in the room, but not for 2 hours. The recent sessions have felt easy, fun, and like they are effectively moving us towards our goals. On Thursday I did roughly 3 hours and it felt easy to be in there for so long. Sarah has been connected to me for at least 90% of the time. Holy moly!! My current intention is to do more sessions that are longer, maybe 4-5 days a week getting in there for 3-4 hours straight. I think it will be easier to do it all in one chunk because once we finish it can be harder to get both of us back in the room. I have also started tracking the SR room hours again because I think it actually did help motivate me to be in the room more and when I am in the room more I feel better about our program overall. I also think it could be useful to have the time documented for homeschooling purposes.

Speaking of homeschooling, the paperwork has been mailed! I will call next week to find out if it was received and if there is anything more I need to do. Mailing the paperwork nudged me into a tailspin of panic over our program, feeling like we aren't getting enough hours. That is why I started increasing my own hours in the room. What is the one thing I have the most control over as long as I have help with Amy? Getting my own rear in gear. And the more I am in the room then the more effective I feel when observing and giving feedback to my volunteers. The more I am in the room the more effective I feel in helping Sarah learn and thrive. 

I was thinking about what big ups and downs I experience and how helpful it is to have my pit crew to listen to me and help me back on my feet. My primary pit crew includes Carl, my mom, Sonia, and M. Thank you pit crew!! They witness all my grand ambitions and my panicky wobbles. They help dust me off, mop my brow, and send me back in with renewed vigor. I feel like a race car driver or a boxer, and when I rise it is with increased love, ambition, hope, and determination. Perhaps I am in the boxing ring with my own judgments and fears. 

I've been thinking more about what I need to keep myself ready, refreshed, and focused for going in the SR room. I want to start making more of my choices with that as my underlying motivation.  The main things that keep me from going in the room are fatigue and burn-out. So, I will have more of a priority on sleep and I will increase my appreciation of my breaks, such as when I go to zumba. Instead of seeing them as indulgences I will see them as essential ingredients to our program. Same with reading books just for me. Or relaxing on the sofa with my husband and cat while watching a movie. Essential. I can feel how internally I think I am joking as I write that, but I really mean it and want to remember it. 

May you all have the support you need to be on your best feet for whatever you most want to do with your lives. 

July 13

This past week was very low key. Sarah got sick Tuesday night and it was only yesterday that she started eating almost normally again. She was up and about most days but not with her usual vigor. There were still some good play sessions but we also spent a lot of time on the couch reading or watching Dora or Donald Duck. I have always loved Donald, in part because of his lack of perfection and his temper. I am trying to remember this when Sarah is in a screamy mode or when I have more of a temper. 

Notably, Sarah has a renewed interest in the early math elephant game that involves different mats for sorting the elephants in different ways. She spent 45 minutes with G. playing with the elephants in all sorts of ways. She spent time playing with the elephants with Amy and me, joining an activity already in progress. She spent time on her own sorting the elephants on the color sorting mat. So many things can seem so natural as to be of no consequence when we finally get there, but it is really huge that Sarah continues to learn and grow over time, returning to old toys with new focus and understanding. Perhaps the miracle is that all of us continue to learn, grow, and change as we do.

Twelve years ago today Carl and I married each other.

Unfortunately, Carl has now gotten whatever Sarah had so our anniversary plans have changed. I had planned a few meals out and we will reschedule those. We were going to be out for breakfast this morning but instead I am in my office, Carl is resting, and one of my fabulous sitters is with the girls.

In response to my last update, a friend asked if I ever wondered what having Sarah brought into my life that I wouldn't have had otherwise. I know I have thought about this in the past, but I appreciate the suggestion to think about it again....I have been thinking a lot in general about my life and Sarah because sometimes I resent and resist it so much and I envy my friends with "normal" kids. Then I wonder about the point of life and having kids. I think when I resist my situation it is because I am thinking I'm not getting what I wanted from having kids. But I am. I have a loving connection with two amazing girls. I get to snuggle with them and read to them and watch short movies with them. I get to eat pizza with them, as long as it is non-traditional pizza that I make myself. We get to go on adventures, do art projects, and play together. Even with Sarah's eating situation, we still get to enjoy food together. I get to go on vacation with them.  I get to go to work and go on dates with Carl. Certainly there are some things I don't get to do, yet, and that are harder or different than more "neurotypical" situations. But overall, is there really something I am missing? I don't think so.

Having Sarah as she is has meant stretching myself in more ways than I knew possible. I have become a much better cook, and a much more creative cook. I have reconnected with the Option Institute. I have become connected with amazing people who give their love and creativity so generously to my family that I get teary whenever I think of it. I have gotten much better at asking for and receiving help. I write. My whole family eats more healthily than we otherwise would have. We found our current house, which we love, in part because we wanted a space that would work for a Sarah-Rise room. We have Amy. If Sarah had been "typical" then we probably would have had a second child sooner and then that might not have been Amy. I have a much closer connection to Sonia than I might otherwise have had. It is amazing that she and I can have so many coexisting relationships and still like each other! I have gotten to see and fully appreciate amazing support from friends and family. Not all families with kids with special needs have such support. Not all families in general have such support. Do I wish things were easier and could become more "typical" tomorrow? Sure. But perhaps then I wouldn't be so aware of the love with which I am surrounded. Perhaps I wouldn't be so aware of how deeply incredible some people are. I certainly wouldn't want to give up knowing the people I now know. If things were easier and "typical" from the start, I might not have appreciated the ease that is Amy. Certainly parenting is an incredible challenge and source of growth for anyone on the journey and I have hugely challenging moments with Amy, but there are some moments that are so easy as to be laughable because of the contrast. And sometimes Sarah is the easier one. It is all relative moment to moment. I don't think I could design a better life situation than this one for challenging my foundations of belief and attitude and giving me the opportunity to really be who I dream of being. (Remind me of this in a few hours when I am feeling like a tub with no water who wants desperately to eat a pound of chocolate and not have screaming children asking me for things.)

I often notice myself thinking that "once things get back to normal then..." in terms of our routines or schedule. Maybe there is no such thing. There is a slight routine to which we gravitate but there are always variations and changes. Always. 

I have added some post-its and one of them is "what is the next tiny step towards your dream life?" This one almost always helps me shift instantly into a little bit more joy because it reminds me that I have the freedom to change many things. One tiny change is to make more time to read books just for me. I recently picked up the novel I started months ago and I felt as if I were a dying plant suddenly receiving water. I want to take note of those things that are water for me and include them in my daily life. There seems to be such a focus in society on being productive but what if our most important task of productivity is to take excellent care of our selves? Of our minds, bodies, and souls? What one will do with one's time is irrelevant when one gets sick and the only task is to get well. What if maintaining wellness for myself and my family was my first goal and every thing else was secondary? 

I hope you are all well and receiving the water on which you thrive.

July 8

This past weekend we had a small vacation with several relatives at a lake house. It was lovely. And a bit stressful. I am realizing that at this point most of my vacations will be a mix of both. The girls are getting more independent so some things are easier and feel safer and some things feel more challenging. Sarah loves doors and so often tried to leave out the back door to the lake house (away from the water). I don't think she was actually going anywhere, but I still felt like we had to be vigilant because she can be so silent and speedy as she moves from one location to another.

Highlights from our trip... 

When Sarah saw one of her relatives she said, "Hi, S." We know her greetings are getting to be amazing, but to greet someone by name takes it to yet another level. She hasn't seen S. in almost a year.

We saw fireworks from a boat. Sarah loved the whole thing, especially pretending to drive the boat. Amy tried valiantly to stay awake but fell asleep right before the fireworks started and couldn't be roused. She slept in my arms, in her life jacket, so soundly that I was able to step off the boat and carry her to bed, take off the life jacket and her sweatshirt, and tuck her into bed without her batting an eyelid. 

Carl took the girls out in a kayak. The girls shared the front seat and Carl was in the back. The girls each took turns attempting to paddle. This was one of the cutest things I have ever seen. Carl took them via water over to a nearby beach. The next day they did the same thing in a paddle boat and even got snow-cones. Sarah's was snow flavored. 

Carl took Sarah on the jet ski, at her request, for a very short, gentle ride.

During our long drives Amy had a bit of a hard time, as usual. Carl came up with many wonderful, simple games to play. Sarah participated some. I came up with a hard game of singing songs that corresponded to each letter of the alphabet, so that a word in the title started with the letter we were on. This meant that Carl and I had to make up some songs because with some letters Amy would say, "oh, oh, I know! I know a word that starts with ___" and she would give us a word but sometimes we didn't know a song with that word. Amy didn't actually sing any song for this game. She saved her singing for when we had music playing, which meant we listened to two tunes at the same time. Amy also made up a wonderful song about waiting at a stop light, but when we tried to record it we were too late.

...

I continue to have lots of thoughts about parenting and life, often having realizations that then go flying out the window when there is whining and screaming and resisting from the girls. To help me remember some of my intentions I wrote notes on post-its and the girls helped me stick them around the house. I am surprised by how helpful they are and I plan to add more. The notes say things such as "choose compassion" and "kid screaming is not about me." 

Last night Sarah had a bit of a tummy bug and threw up a couple of times. It is interesting that I can meet those events with compassion and no regard to the inconvenience of the hour, whereas a happy healthy midnight party results in my grumpiness and resistance.

A small challenge we continue to have is that Sarah attempts to hit Sonia. Not hard and often with no actual contact. Sometimes she just says, "hit Sonia" when she is mad about something. This happens even when Sonia is not around. When we ask why, Sarah says, "because frustrated." We ask why she is frustrated. Sarah answers, "because hit Sonia." Hmm. This loop does not actually lead to the information we seek.