April 28

This week we had 28 hours and 15 minutes of official SR time, plus preschool and gymnastics.

It had been a couple weeks since Sonia last went to preschool, since I did the previous two weeks, and she noticed a big improvement in how attentive Sarah was and how little she needed to be redirected. Both of us have noticed how Sarah becomes more exclusive towards the end of the preschool morning. Perhaps her attention muscles are tired or perhaps it is what different activities are possible. Noticing this, I feel affirmed in my decision to continue SR full-time with small bits of a more traditional classroom.

Yesterday we went to a small playground that only had 2 other kids running around. When they were around Sarah and speaking to her it seemed that she was both excited (clothes, shoes, kids) and perhaps a bit overwhelmed. After that bit of interaction she pushed the stroller back and forth for a long time. Not that pushing a stroller is bad, but I think it is maybe information about when she wants to do something more in her comfort zone. After a lot of intense anything I certainly like relaxing a bit by reading Facebook. Maybe some of Sarah's isms are similar. 

In the past week Sarah has done more isming in the SR room than I have experienced in a while. I'm not sure if this is delayed processing of the hospital experience or any of her new achievements or if it is just that there are some items that are so awesome that there is no reason to move beyond opening and closing a box or flipping through a new book with smiley faces and dotted lines. The caveat to all of my musings is that I am really making all of this up. Certainly my thoughts might be well-founded, but I am still really guessing at reasons and explanations. So take all of my thoughts with a few grains of Celtic sea salt.

Mom-Mom and Pop-Pop noted that during their visit Sarah had fewer tantrums than they remember from the past. It's helpful to have that perspective since I tend to notice that there are still tantrums at all.

Grandma is visiting this weekend, helping with childcare, yard care, and house care. She has noticed how much more Sarah is saying and the increase in clarity. 

We have been asking Sarah to help with small tasks more often and she is in turn asking to help more often. She mainly likes to help with food preparation. Meanwhile, Amy loves helping so much that we sometimes have to make up tasks for her to do. It seems that Amy would rather help than do anything else. Amy does a task and then comes back with "more hepine." (more helping). Sarah now does the juicing almost every morning. She also helps make her milkshakes and stir soup. And both girls help with making cookie dough (egg, coconut flour, almond or cashew butter).

Sarah loves eating roasted beets (roasted in coconut oil). One morning she had finished her beets and wanted more. She had some meat on her plate. I asked if she wanted to trade a couple of beets for a couple of bites of meat. She responded "trade puh-late" (trade plate). I love it whenever she responds in a way that shows she really understands something. 

Wednesday night, Sarah spontaneously picked up one crayon and said "have one." Then she picked up another and said "have two." Then another and "have three." Then another and "have four." Wow!!! To me, this means that she is really starting to understand counting and numbers beyond having the order of numbers memorized. 

Sometimes going out in public and noticing the differences between typical kids and Sarah can still be fodder for my judgements and worries. At those times I can begin to wonder if part of why I've been happier since starting SR is that we don't go out as often and that I have more help. I know I have also shifted some beliefs to help me love things just as they are, but I clearly haven't fully cleared all of my various beliefs about how things should be. 

I am also quite aware that I have monthly visits to certain thoughts and beliefs. Usually about once a month (yes) I have a tailspin of being a bit more grumpy/tight/controlling and wondering why Carl is with me because I am such pond scum and is he so awesome, blah, blech, blugh. This has now expanded to thinking that Sonia is so much better than me at parenting, SR, cooking, life, etc. Ugh. Even while I can see these for hormonally-refreshed, stagnant, untrue beliefs, they still aren't the most fun to have and part of me clearly still believes them. For the past few days I have definitely felt like I've been on the wrong ball more often. In the grand scheme of things I know I am still doing really well and am mostly happy and mostly loving, just not quite as fully as I want to be. I know it is technically ok to be grumpy, but it doesn't feel as good as being happy. Sometimes I am just so tired. And the rest of the time I feel and know that I am incredibly blessed. I guess it is ok to be incredibly blessed and to be deeply tired. Probably some of the feeling of deep tiredness comes from judging myself to be inadequate. When I'm feeling good about myself then I'm really not so tired, even if I am sleep deprived. 

April 21

This update is brought to you by the letter P, as in P is for "Pecan." Or as in "pecans cause Sarah to go into anaphylaxis."

We knew from previous allergy testing and experience that Sarah has a mild peanut and walnut allergy resulting in a runny nose and itchy eyes and face for 30 min. We knew that she had been eating tons of almond butter and cashew butter and had tried pistachios and macadamia nuts with no trouble at all. So, I thought I would add some variety to her coconut milk shake and use pecan butter instead of almond or cashew butter. It was immediately obvious that she was allergic, but it took about 5 min to realize that it was more than a mild allergy. I called the pediatrician and they advised me to give her benadryl and to call 911 if I thought she was having trouble breathing. She wasn't having hugely notable trouble but more like 2% of a change compared to normal and her lips were swelling, along with the hives around her mouth. With a deep fear and an "I can't believe I am in this moment worrying about the life of my child" thought I carried her down stairs and called 911. The fire department arrived first followed by the paramedics. Her breathing was still ok but they wanted her to go to the ER anyway. I transferred her carseat to the ambulance and away we went, with Sonia, A., and Amy explaining the situation to the cluster of concerned neighbors. Carl actually beat us to the ER since he works in such close proximity to the Children's Hospital. IV fluids, benadryl, steroids, and epinepherin all helped Sarah finally stabilize, but not after she was an itchy mess covered in hives and still having puffy lips and a puffy tongue. Sonia and A. made deliveries of requested items, two rounds of such being necessary since we didn't immediately know we would be spending the night. Apparently sometimes anaphylaxis can have a second flare up so they wanted to monitor her overnight. Sarah and I spent the night at the hospital while Carl went home to be with Amy. In the morning we were visited by Captain America cleaning the windows. (My stepfather learned that this was only the second time this even has ever happened in Pittsburgh so our timing was good!) Carl and Sonia each visited in the morning and brought fresh veggie juice and coconut milk for Sarah. We were finally discharged and able to return home, epi-pen in tow (now to be wherever Sarah is). Pecans will not cross my threshold again and we will meet with an allergist to find out if there could be other severe allergies.

Just shy of 25 hours this week, Sarah has had many jaw-dropping break throughs and some other lovely, if not jaw-dropping, moments and achievements. 

1. At preschool she reached out during circle time and spontaneously started a tickle game with the boy next to her. Since it was the end of circle time and the kids were about to line up for hand washing and snack, the game didn't go beyond Sarah tickling G. while saying "tickle" and his tickling her back once. Still, this was unprecedented and phenomenal for her to initiate a game with another child. 

2. While playing Twister with Sc, Sarah initiated including stuffed animals Gerald and Piggie into the game, placing them on the circles and putting them near the spinner. Sonia had evidently been including them in other activities with Sarah so it is very exciting that Sarah expanded on the idea of her own accord.

3. Mom-Mom and Pop-Pop are visiting this weekend. Sarah went upstairs with Mom-Mom when Mom-Mom asked to see the girls' room. Sarah ismed for a few moments and then opened her arms wide while saying "Nice room." She followed with saying, "share bed...share dresser... clothes in dress-er" and pointing out which drawer had Amy's clothes and which had Sarah's. 

4. When I went to give Sarah some of the multitude of post-hospital medicines, she worked to clarify her rendition of "medicine." Out of the blue she said "cypro-hep-ta-dine." That was the appetite stimulant we used to give her over a year ago (and not since then). Her memory astounds me. 

5. Sarah repeated her first curse word. I spilled some of her medicine and said "f*#k" and from behind me chimed Sarah's perfect repetition of the word and Amy's attempt. An excitingly typical milestone. I know Sarah repeats tons of new words that she hears so from her perspective this is probably no different, but it means I need to watch myself more carefully!

6. Other sentences include 

"cat sleep on pill-ow in mom's closet" (true)

"daddy have buh-lack hair" (not true, but the sentence construction is great)

"Puhlay with mom-mom in sayra rise room....now"

7. We have bath crayons that the girls play with during bathtime. Friday night Sarah started making the marks we know are her writing attempts. She spontaneously started saying "S-A-R-A-H" as she wrote each squiggle. Each of her marks look mostly the same, but the fact that she can spell her name (we knew she could recognize it) and that she wants to write it just knocks my socks off.

Pop-Pop thinks that compared to November, Sarah's communication skills and clarity have increased 1000%. Mom-Mom noticed a huge difference even compared to early February. Woohoo!

This morning we had a totally wonderful team meeting. I am grateful and inspired to have such thoughtful, loving, creative people on our SR team. I love having such amazing help to think clearly about how to move forward as effectively as possible. And we have such a good time being together! LOVE our team! (Thanks to Mom-Mom and Pop-Pop for once again providing excellent childcare, including Mom-Mom doing 2 1/2 hours of Sarah-Rise time). 

April 14

This week we got 31 hours and 15 minutes of official SR time plus preschool and gymnastics and uncle A. visiting. 

Usually it is Sonia accompanying Sarah to preschool but this time it worked with my schedule so that I could attend. There were moments of thinking that if you didn't know she had special needs that you might not know it. And there were moments of knowing that it is still abundantly clear that Sarah has special needs. Moments of  me interacting with the other children or watching them play in a pack where I felt slightly daunted about ever getting to that level of interaction. Then I noticed that I was believing she somehow needed to become like the other kids. When I let go of that belief I felt much better. Sure, I would love for her to play with other kids, but I want my first priority to be loving her exactly as she is. I think my favorite moments were when I really engaged my Son-Rise energy and interacted basically as I would at home. When she was at the sand table by herself I joined her. Sometimes she told me to move away but other times she looked at me and talked with me. When other kids spoke to her I was glad I was there to go over and encourage her to answer them (which she usually did after some time). She sat easily for all of the circle times, with only a few reminders from me that it was still time to be sitting. She clapped at the right times for the days-of-the-week song. She did the activities that the teachers initiated one-on-one (coloring a letter and sponge-painting a kite). She mostly stayed in line, but did need reminders to keep walking. 

There was a lot of time where I was just observing and could begin to wonder if it made sense for me to be there. In the moments of interacting with children, though, I was so glad to be there to step in at just the right moment. I don't expect the teachers to be able to do that since they are managing the whole class. I also know my goals for Sarah and where she needs help. I observed that one of the teachers didn't give Sarah much time to respond to her request to say the teacher's name so I suggested giving Sarah a few more seconds. I don't know if that will come to fruition but I'm glad to be able to say something. This will probably be a slightly challenging thing for me to keep speaking up for what Sarah needs to make her school experience as good as it can be. She can't yet say "hey, give me more time, I'm getting there!" so it's up to me to get past my discomfort over possibly saying something that the teachers would feel uncomfortable about. I guess it really boils down to the fundamental Option belief that we can't actually make anyone feel something. We can do something and then they have their belief and then they respond. With much of my life I know I want to believe that is true but that I am still actually believing that I can cause someone to feel bad/mad/sad/glad. Well, one moment at a time to unravel this ball of beliefs.

Sarah's uncle A. is visiting and has spent time in the SR room, being trained by Sonia. They have done some sessions with both Sonia and A. in the room and it went well, with Sarah interacting with both adults. We know she does this outside of the SR room but it isn't something we have incorporated much in the SR room yet.  It is lovely to notice how much A. can understand when Sarah speaks. Months ago we used to have to translate and now she doesn't really need a translator. 

We have been starting to request more of Sarah in daily life. We started noticing that we were asking Amy to help more than we asked Sarah to help, because Amy loves to do it. But we want them both to be capable, helpful, independent individuals. This morning the girls made juice all by themselves (with supervision). Carl got them set up and used the opportunity to help Sarah with some of her spacial reasoning since you have to orient the plunger correctly to have it work. 

I have been reading tiny bits of a book by Anat Baniel (inspired by S., another SR mom, to revisit it). Something that was notable in my most recent reading was the importance of going slowly when learning something new. When you are asked to go fast then you revert to what you already know so if you want to learn something new and reinforce those new neural pathways then it is important to go slow. Given how much I can end-gain about wanting an outcome, this reminder about the importance of slowing down the process of getting to the goal is really helpful. It helps me relax about doing less or doing something slowly because I'm able to frame it as important instead of something annoyingly slow or a waste of precious time. It's not a waste; it is a full use of that time.

Tonight Sarah was in fine form with answering questions. Carl told her she could get forks for herself and Amy. Sarah responded "No. Use the hands." Then when I asked her if she had a plate or if she needed one she answered "have one." That was true. As with so many things, I find myself wondering if the reason for her growth has less to do with growing intelligence and more to do with my getting out of the way so the intelligence and independence she has can shine forth. Maybe she doesn't do some things because she knows I will do them and I have enforced that pattern of household habits. Maybe the biggest gift is to ask and let her respond. 

Speaking of asking and waiting for a response, Carl had an amazing SR session on Friday. They were reading Knuffle Bunny Free (by Mo Willems, of course) and he asked Sarah some questions about what was going on (how Trixie felt and why). Inspired by our recent efforts to learn Italian and noticing how much time we need to supply newly learned words, he waited for a longer time than we normally do. A much longer time. And she answered! Many questions. And it was clear that she really was understanding. 

Sarah has also really progressed in her physical participation in the playroom and copying facial expressions. She has an adorable sad/mad face (currently the same face). She does a variety of pretend cries. She plays Twister! She doesn't yet understand leaving her hands and feet in place but she will take turns spinning the dial and will move her hand and foot to the correct color after I have moved. Super adorable and exciting. 

Today Sonia and I went to Ohio to visit another Son-Rise family and play with the SR kiddo. It was a wonderful experience (and Sonia's wonderful idea). In addition to meeting a lovely woman and her adorable son, I got to really put my Son-Rise understanding, techniques, and flexible thinking to the test. I had such fun playing and joining and celebrating him. I think it would be wonderful if more Son-Rise families did volunteer visits with each other, observing and sharing feedback and experiences. 

April 7

This week we had a stomach bug sweep through the family in varying degrees of severity. For most of the week Sarah was sick and then when she was better I was sick. Sonia was very sick for most of the week. And Amy had a mild cold. So... we got 2 hours and 45 minutes! The 45 minutes was with me early in the week and the 2 hours was thanks to Sb coming in yesterday. She always has lovely energy and it was an especially welcome breath of fresh air yesterday. Sarah is now fully recovered and Carl and I are most of the way, but not fully better (we were never terribly sick, but there is still a difference between feeling a bit sick and feeling quite well). It was a very quiet week with mostly just the girls and me. There was lots of napping, lying on couches, watching movies, and reading books. 

Last Sunday evening we did an Easter egg hunt with plastic eggs. It was amazing to see the difference in how the girls approached it. Amy immediately knew what to do and started filling her bag with all the eggs. Sarah found an egg and opened it and closed it and opened it and closed it. She put it down. She found another egg to open and close. Eventually Amy had all the eggs in her bag. When Carl commented on that fact then Amy went over next to Sarah's bag and started putting eggs from her own bag into Sarah's bag. I could barely contain my tears over Amy's sweetness. Then Amy wanted to open and close eggs but she couldn't close them so, at Carl's suggestion, she asked Sarah to help her close her egg. Sarah did (basically taking the egg as her own and then Amy got the one Sarah had previously closed).

A few things stood out for me about the Easter egg hunt...once again it pointed out that I have not been making it up when I see other typical kids engaging in activities and I think that Sarah won't do the activity. It's true. As of now, most of the time, she will either do something entirely different or do the activity in a different way..... So this is another opportunity for me to notice where I am stuck on how things should be a certain way and to open my heart to allow it to be wonderful...not just ok, but really great that Sarah does things her way. And to also allow it to be ok that I am overjoyed that Amy participates eagerly in the neurotypical way. It is so great to have Sarah be who she is to help me open my heart and let go of shoulds. And it is so great to have Amy be typical. I guess it points out that it's not about my parenting. I can think that I did something wrong and that is why Sarah doesn't do things typically but that is just as erroneous as thinking I did something right to make Amy be who she is. Sure, I endeavor to be loving, supportive, and instructive, but they take that input where they take it. There is only so much I can control (as is pointed out in great detail every day when I try unsuccessfully to control my children in varying ways!).

How do I write about all of this experience of being Sarah's mom, of being a mom, in such a way as to share how hard it sometimes feels and to also really own that it is my beliefs that make it feel hard and to make sure the girls know they are really loved? Is it ok to share that it has been so heartbreaking over the years watching typical kids participate in some activity and knowing that Sarah isn't there yet? and it is ok to share that I feel proud and love the fact that Amy is typical? typical or neurotypical being the new pc way of saying "normal." And yet, we are all such individuals. I have my quirks and I'm glad that Carl can love me in spite of some of them. I can be really grumpy and he doesn't fault me for it, which helps me reach equilibrium faster. I wish I could be more that way with the girls. I see how I take in the idea of happiness being a choice and I want to be happy so much that then I don't give people loving space to be unhappy. I sometimes grumpily tell Sarah that she can wait either happily or unhappily. I sometimes grumpily tell her it won't make it happen faster if she is mad. But is that the response I would want when I am mad or upset? not at all. Certainly I often have compassion and open creativity in listening to Sarah and helping her, but I don't when I am tight and grumpy myself, as I was this morning. My mom made the good point that if I don't accept my own self gently for the times I am grumpy then I probably won't have much space for the girls when they are grumpy. Well played, Mom, well played! If she had just told me to be kinder to myself I probably would have brushed the comment aside. But in the context of helping me be a better mom, well, I guess I better see if I can accept my grumpy self. Dang it!

A few nice moments from the week:

I realize that Sarah always gets her shoes on the correct feet now. I don't know when this resolved itself. Probably several months ago and I didn't notice because it was the way it should be.

Sarah and I were watching Toy Story 3 together, which neither of us had seen before. There were a few parts where we both laughed and it felt so good to be sharing that movie-watching experience in such a genuine way. We really both thought the same thing was funny. 

At one point in the family room, Amy was hugging Sarah and Sarah was giving Amy a chin-press (a sign of affection). Amy then looked up and said "kih kih" (kiss, kiss) and Sarah leaned down and kissed Amy on the forehead. So adorable!!

I think in some ways we have a tiny version of the odd couple. Sarah comes in the house and leaves her coat on the floor and her shoes wherever she stepped out of them. Amy clamors for me to hang her coat on its hook and then carefully places her shoes side by side on the shoe mat. 

I am thankful for all the moments of witnessing my girls and feeling that my heart is so full that nothing in the world could be better and I am overflowing with perfect joy.