January 26

I thank all of you who responded to my last update. Your suggestions, thoughts, and questions were so helpful. Sometimes questions might seem quite obvious and one would assume I had asked them of myself, but that is not always the case. I haven't yet thought through my answers specifically, but I love the question from one of my friends about what I want Sarah to get from school. I think sometimes what I want for her to get from life can take over my thinking so I don't break things down into smaller pieces. School is just one piece. I have one visit scheduled (weather permitting) and the other will be scheduled soon. I feel much better knowing my next few steps: Visit, discuss, clarify what we want Sarah to get from school. 

Among many thoughtful, loving, wonderful responses, I received these beautiful, amazing words from my step-mom: "What if you knew that The Extraordinary Miracle has already happened? That MANY of them have been happening? And more are continuing to happen? That what Sarah has already achieved in her short life is a miracle? Would you feel a huge high? A sense of I am good at this? Could you sit back, relax, and calmly soak in the radiance of success? I ask this because... Sarah's progress does seem to me like a miracle. We have no 'benchmark' that is appropriate for Sarah, thus one could say she is "behind" the "typical" child... or, another perspective is that she growing her skills by (extra-ordinary-sarah-)leaps and (extra-ordinary-sarah-) bounds at fantastic sarah-speed."

Anyway, thank you all again. You really do make a difference and are helping me think clearly, helping me navigate the path with as much joy as possible. You help me regain my footing when I slip.

This past week was very quiet and the girls didn't set foot outside. It has been very cold and they both had colds. Some of our volunteers were also sick. For all sorts of reasons, we didn't have a normal week. We did very little official SR and very little official brain building. We did lots of snuggling and resting and watching movies. The girls and I watched all of Monsters, Inc. I was impressed by their ability to stick with it the whole time and I think it was important that I was with them and talking through some of the parts to make it easier to understand. They also loved it when I would crack up. I had forgotten how funny it is! 

I have moments of noticing how extraordinarily wonderful it is to live with two small people. In these moments I am not thinking about what they will be like when they grow up, I am just really noticing who they are right now and how awesome and adorable it is. Sure, there are times I feel infuriated and frustrated, but the flip side is being so in love with their dear faces, voices, bodies, and spunky selves that I am the richest I could ever be and I am the luckiest person in world. One of my current favorite things is when Amy tells something to Sarah and ends by saying her name, in a way that clearly includes a comma. "I get to eat a banana but you don't get to eat a banana, Hara." (Amy doesn't say "s" yet so Sarah is Hara.) There is a small pause before "Hara" and then the name is elongated just a tiny bit. 

I am experimenting with a new approach to Sarah's yelling. I was inspired by another Son-Rise mom who mentioned in her blog that an undesired behavior went away after a week of her stopping whatever she was doing when the behavior happened. I realized that I hadn't been fully doing that in response to Sarah's yelling. If nothing else, it is helping me feel more calm. It feels like training myself to have a Pavlovian response because at first I was still responding and then half-way through my response I would realize that I was engaged. As the days go on, I am finding it easier not to respond but just freeze. I still look at her, but I wait to say or do anything more until she has regained a normal speaking voice or demeanor. I am not sure yet if it is changing her behavior, but at least it is changing mine!

Highlights from the week:

Sarah initiated a high 5 with me. 

Sarah answered a volunteer's question about her favorite color. She answered with a list of colors, but it was still the first answer to that question I have ever heard her give. And this was with a new volunteer in her first 30 minutes of being with Sarah! (Yes, we have another volunteer! Yay!!)

Sonia, Sarah, Amy, and I played 3 rounds of the Hat Game. 3 rounds of using up all the cards. Taking turns, acting out the activities! This is a game that I created months ago and it didn't go anywhere at the time. Recently a volunteer played it a little with Sarah, but this was the first time to try it with 4 players. The game involves a hat filled with little pieces of paper that describe some moment from one of the girls' favorite books and then there is a question or direction based on the description. For example, "Toad makes delicious cookies. Can you pretend to make cookies?" I am thrilled with how easy and fun it was to play the game and how adaptable it is. I even expanded it while we played, writing out new cards based on our latest batch of favorite books. We can just keep adapting the basic idea as long as we want. It involves taking turns but there is no winning or losing. Just fun and hanging out. It is also really fun to play such a game with other adults as some of the players. Sonia and Carl are creative and funny! What I also love about this game success is that it didn't succeed at first. It wasn't that it was a bad game or bad idea, it just wasn't the right time. Such a good reminder about anything else I might try that seems to flop. Maybe I just need to try again in a few months. 

We have teaching boards for a zipper, buttons, and snaps. We realized this week that Sarah can do the zipper and buttons all by herself! (She has been able to do the snaps for a while). Yesterday she zipped up her sweatshirt with only the tiniest bit of help from me!!! Yes, that was my entire sock drawer flying past your window as she knocked all of my socks off. I cannot believe that we are at this point. As with so many skills, she gets to them when she is ready. When she is ready she practices and works at it determinedly. If something seems laughably impossible, then perhaps we just need to wait and then at some point it won't seem laughably impossible. At some point, we will laugh with surprised delight as we realize what she can do. This is also a great reminder to respect the ism. Isms are repetitive, exclusive behaviors done for Sarah's own enjoyment where it doesn't really matter to her if we are there or not and it can feel hard to get a connection. The beauty of the Son-Rise approach is to respect the ism and assume it has value. With some of Sarah's isms I do not always see the purpose, but with some, such as repeatedly working with the snap, button, zip boards, it is very clear that she is doing the amount of practice that she needs to master something. So our gift to her is to get out of the way, allow the time and space, but be there to help when she asks. 

January 19

I am getting over a cold and feel like I have been in the same hamster wheel of thoughts, beliefs, and feelings that I have been in before regarding decisions about schooling next year. This time it has felt even more intense internally so maybe it makes sense that I feel sort of beat up. Maybe that is just being sick. Or maybe the reason I got a cold was because I questioned my decisions so harshly that I sort of beat myself up. Then again, Sarah has a cold too so maybe it is just germs and bad timing. I can get really scared that I have made the wrong decisions and will screw up Sarah's options in the long run. Or I get really scared that I will make the wrong decision going forward and screw up her options that way. I am worried that in trying so hard for a home run that I may strike out. I know a lot of these fears may not actually make sense to observers or even other people very close to the situation, but they are my internal experience and that is what I write about so I can remember it later.

The next step is to make a couple more visits to schools and then have some discussions with Carl and Sonia. And to try as much as possible to trust my gut. The specific detail I found out that has me tailspinning is that if we have S attend a public school they would want to put her in second grade and the most they might allow us to change that would be to first grade (I had thought we could do kindergarten). This is mainly regarding the life skills class which is just for kids with special needs. It is the class we had decided upon two years ago right before I decided to pull her out of school entirely for full-time Son-Rise. If she goes to private school then we have more leverage but then I feel like we are sort of committing to private school the whole way or home schooling the whole way. I visited my dream private school and took S to meet the kindergarten teacher, who was quite lovely with Sarah, but also thinks Sarah won't be ready for her class in the fall. Maybe in another year. The upcoming visits are to the private school preK for 4 yr olds and to the life skills class in the public school system, which at least has moved to be in a very convenient location. Somehow if she goes into the same class we had planned on before then I feel like I have failed, didn't achieve enough fast enough. I start questioning everything. And yet, if I hadn't kept her home for full time Son-Rise, I don't know if she would be talking now. Maybe. Maybe not. This all feels very hard and stressful. It has felt like an existential crisis about our program. At least I have lots of smart, loving people helping me think things through and not make any rash decision. I want to choose the path that will help Sarah flourish the most.

Yesterday Carl discovered Sarah "fixing" the toilet (which wasn't broken). She was there with the plunger in place and a grin on her face. Then last night she wanted to read instead of go to bed. Carl said no. Sarah said she needed to use the potty and that she wanted to go by herself. After many silent minutes, Carl went to investigate. Bathroom door closed, light on, Sarah inside reading outloud to herself. :) 

Anywho, that is all for today. I hope you are well.

January 12

I've been trying to wrap my mind around an idea lately which seems very simple but profound. When a day or moment is done and I notice how much I did or did not do, maybe that is just information. It doesn't have to be something that I beat myself up about. Maybe if I only got 4 out of 10 things done then that was all that could be done and that is information for the future. Maybe the amount of breaks I need during the week to stay afloat as my best self if just what it is and doesn't have to mean anything. It is just information. Maybe the amount of SR and of brain-building stuff we do in a day is the amount that could be done while still being present with the demands of the day, even if it doesn't match my theory of what could or should have been possible. 

Last week Sarah constructed Mat Man (a stick figure) from wood pieces. I have been modeling it and letting her have free play with the pieces for a while. This time I handed her the pieces while saying what they were for and she placed them all by herself. It looked almost identical to the one that I make!

We have a new volunteer who is totally awesome. All of my volunteers, past and present, are so awesome I just cannot believe it or begin to convey the magnitude of their wonderfulness. I continue to be amazed by the people who join our program and bring their sweet selves and respond quickly and easily to my feedback. So amazing. I still have moments of feeling awkward about accepting the help and find it hard to believe that they all really like to come here, but I think they really do. I am so so so so so blessed.

Amy has been playing with the Barbie and Skipper dolls that I brought out of storage for several weeks but Sarah hasn't shown much interest until this week. We found her playing with a Skipper doll in the rope handle on a drum. She was pretending to have it swing and saying "tick, tick, tick" just as Carl does when he pushes the girls on the swing.

One evening at bedtime, Sarah accidentally bumped my nose with her head. Completely on her own she then said, "I'm sorry. you ok?"

Pronouns have been a sticking point for a while and we continue to experiment with different ways of coaching her. During G.'s session he figured out a new prompt of "are you telling me...?" and waiting. Sarah then fixed her pronouns or perspective to be correct. Maybe she actually understands pronouns more than we think but gets confused about whose perspective she is voicing. Slowly but surely we are inching towards more clarity. I am starting to be more difficult and slow when she says something with the pronouns wrong and then I respond very quickly when she gets them right. I am hoping this will help too. A large part of this process is for me to notice when I enable the incorrect pattern instead of helping Sarah learn how to be clearer. 

Carl reports that Sarah is a speed demon on her tricycle when she is going downhill. I didn't realize our street had a slope but apparently it does since going uphill Sarah is a bit slower. 

I've heard of the concept of rewriting one's memories or changing the story one tells. As we have been spending lots of time looking at old photo books of when Sarah was younger, I find that I am doing just that. In the earlier days I had lots of joy but I also had lots of tight spots of fear and despair as I saw Sarah's peers galloping apace with their development as we trudged ever so slowly. I was scared then because I felt like we had to catch up and I didn't know if we would. It is so lovely to look back and tell my younger self that it is really all ok. I can enjoy the pictures more because I know she does in fact learn to roll over, sit up, crawl, stand, walk, and talk. From our eating struggles of the early days I have always held a vision of us telling Sarah of all the struggles as we all have a good chuckle together because it is clearly a moot point. I hold that vision still, and it is still somewhat to do with digestion and eating and sleeping through the night. We have made enormous progress with the eating situation but we are still in the midst of it too. Some day we will look back on these harder times and chuckle, telling our past selves that it really did all work out and letting the old fear evaporate.

May your current days and old memories be sweet.

January 5

Sarah's fine motor abilities and attentiveness continue to expand. Carl recently found Sarah wearing my pajama shirt, fastening and unfastening the buttons repeatedly all by herself!! Holy moly!!!!! Her drawings of smiley faces and stick people have improved notably. She continues to enjoy practicing writing. We played at least 4 rounds of tic-tac-toe where she easily made her wobbly, perhaps unrecognizable, "x" and waited her turn. I sometimes had to prompt her to write in the empty squares and she doesn't yet understand the goal or idea of winning, but it still felt like we were really playing a game. With Carl, Sarah built a Goldiblox contraption and was more attentive and focused than she has been in the past with building something.

I am super excited about Sarah's puzzle progress. Puzzles used to seem so impossible, even perhaps a year ago. Coaching Sarah to manipulate a piece correctly seemed impossible. Now she easily completes the wood puzzles where you put a piece in a hole of the same shape. She easily completes the shape-sorter ball. This week I gave her one of the 3-piece jigsaw puzzles that have one simple picture and a three-letter word. I put the three pieces almost together so her role was very clear. Then I moved the pieces farther apart. Then I rotated one piece. Then I turned one piece over. Then I turned all of them over and rotated them differently. The last stage was the only one where she needed help and she asked for it after trying by herself for a while. I gave one verbal suggestion and she got it. I feel like I finally understand the way to help her in small increments. At one of my Son-Rise training sessions, another parent recommended The Woman Who Changed Her Brain by Barbara Arrowsmith Young. I skimmed it and initially didn't think I had gotten much from it. Now I realize I got the idea that doing a certain task repeatedly and with variation can strengthen neural pathways for seemingly unrelated things. I don't know what other skills and abilities connect to puzzle abilities, but I believe it is helpful for Sarah to be able to look at a problem and understand how to begin manipulating things and changing things towards her desired outcome. 

The girls continue to come up with jokes together that are a mystery to me. When they both tried to go in a small room at the same time, Sarah said "no, no key!" and Amy cracked up. Then they both repeated the phrase several times while cracking themselves up. They also like to sing "baba doink doink" which is a spin-off of Carl's version of the Sandra Boyton song, "Perfect Piggies." I just love how Sarah and Amy feed off each other and build off of each other's statements.

Carl installed a pull-up bar in our bedroom. Both girls like to hang from it (with help) and to pull on the stretchy assistant strap, bouncing and swinging and hanging.

We have a play date every week, alternating houses. In the past, when it was not at our house I would only take Amy while Sarah stayed home for SR time. Due to winter vacation, this week I took Sarah with me too. It was wonderful! I think she was more focused on the other kids because it was a new space and she didn't have all of her familiar things to do that might distract her from the other kids. Whatever the reason, it went beautifully. She promptly sat down to play with playdoh with the other kids, saying "want to play." She alternated isming with the lids and interacting with my friend or the other kids. There were moments that felt like totally typical kid play. While I am used to this with Sarah and Amy together or with Sarah and adults, it is much more rare with non-family kids. Totally awesome. I have rearranged our schedule so now we can have Sarah participate in play dates every week, not just the ones that are at our house. I feel so blessed to have found what feels like the perfect play date situation for where we are in our lives right now.

As we have eased out of vacation and into our more usual schedule, I notice I have a deep inner blah about some of the tasks I set for myself each day. Some of this is probably based on the true experience of Sarah's resistance and the rest is probably based on my expectation of her resistance and my feeling like a failure so, you know, maybe I shouldn't even try and that would be easier. Or maybe I give myself a yucky feeling in the pit of my stomach so I will do the tasks so then the feeling will go away. Whatever it is, I want to shift it but haven't yet sorted it out.

My recent jumble of thoughts and questions for myself (while still primarily feeling good and excited about everything)...I wonder at what point I will allow myself to be done with all of this. And why do certain parts feel hard so that I want to be done? (the parts that feel hard are probably the parts for which I am doing these various programs! or maybe the hardest part is how I still think I'm not doing enough or doing it well enough) What do I mean by the idea of being done? It isn't that I will stop being a mom or being attentive to my kids or feeding my family. But I do look forward to a time when it feels easier and when both kids are in school full time and when we can eat more normally without my tracking Sarah's intake so meticulously and being so cautious about changes. Am I taking us all the way? Is that possible? What does all the way mean? Can't we all always learn and grow? Yes, but with Amy I don't feel like I need to help so intensely. I just know she is going to thrive. Isn't Sarah thriving too, doing and learning new things every week? Have I already gotten the ball rolling enough that I can just sit back and enjoy the ride? Can I have that mentality but still also show up to do things to help accelerate the process, such as Becky's program and SR time and the continued food journey? I really believe there can be a middle ground where I feel as relaxed as if I was already at my goal, while still moving towards that goal. I just haven't quite sorted that out yet. Maybe I could figure out incremental changes to help myself with this, the way I did with Sarah and puzzles. So my incremental change today will be to feel that feeling of relaxed achievement while still doing a task I believe to be helpful at least one time today. Awesome. Woohoo! I can totally do this!

As I have been writing, Carl went downstairs to discover Sarah filling our humidifier all by herself!!!!!!!!!!!!!!!!! This involves using a step stool to get to the kitchen sink, climbing down with the pitcher of water, walking to the humidifier and opening the lid, pouring in the water, and repeating. There goes another pair of my socks!

I wish for you clarity towards whatever incremental change will get you where you want to go.