May 26

This update is for the past two weeks. We got 23 hours 2 weeks ago and then this last week was 15 hours and 40 minutes. Pretty amazing that Carl and I can leave the country for a week and the program still continues. Everyone is alive and well, and Carl and I had an absolutely wonderful time in Venice. It is also really great to be back and able to snuggle with my girls. 

Before the trip, I went to my first Zumba class. It was a great workout and lots of fun and it was a really good reminder about how it can feel to be learning something new involving physical copying and coordination. It affirmed for me how important it is that we encourage and celebrate Sarah for each of her attempts to copy physical movement or join in a physical activity. It can be a big deal and take courage to try. And sometimes we think we are doing one thing with our body but we are really doing something else. 

A few weeks ago when Mom-Mom and Pop-Pop were visiting, Sarah somehow started a game about how Pop-Pop didn't have any peas. We would react largely in a way she thought was fun and so the game has grown. It is always Sarah that spontaneously adds to the list of what Pop-Pop is missing. Poor, destitute Pop-Pop apparently has no peas, toothpaste, mirror sunglasses, ladders, stripes, fish, stairs, milkshakes, milk, pants, eggs, flossers, beds, sheets, blankets, or houses! He has to live in other people's houses! Sometimes Mom-Mom is also missing something and other times when I ask, "what about Mom-Mom?" Sarah answers, "don't...know." As this interaction has progressed over time Sarah has corrected her initial "Pop-Pop don't have any ..." to "Pop-Pop doesn't have any..." Amy has now started to add in her own rendition of Sarah's phrases with great glee.

Before we left on our trip we read Olivia Goes to Venice several times. Sarah can clearly say "Ve-nice" and "I-tal-y." She also told us we would be gone "a whole week" and that we would "eat pizza, ice cream in Venice." With that send off we had to indulge in pizza and gelato!

During one of her sessions with Sc., Sarah spontaneously and correctly indicated left and right while playing on a bridge they had made (referencing a bridge in a Dr. Seuss book).

One evening after a long day during our absence, A. was sitting on the sofa with Sarah. He was perusing his phone and not paying much attention to her while she was talking (it had been a looong day; we all know that feeling!) and at one point Sarah reached over to cover his phone and said "look at me." !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I love this so much and for multiple reasons. I love that she is so comfortable with eye contact that she was seeking it out and clearly asking for it. I also love that it happened at a time when, if it had been me, I might have judged myself and thought I should be interacting with my kid, but out of that moment came Sarah's wonderful response, which wouldn't have happened if A. had already been looking at her. So it is a good reminder that while we are helping Sarah, it is also ok to not always be 100% on; she is the one ultimately driving her own bus and taking herself to each new level. We are just very enthusiastic backseat drivers. 

Another moment that taught me something happened the Wednesday before our trip when Sarah and I took Amy to daycare. The night before, I had listened to a talk by Becky Blake (www.creatingsuperkids.com) that discussed how long some kids need to process a request and that if we repeat a request too soon we actually short-circuit where they were in their processing and they have to start over. So when we got to daycare I would prompt Sarah to do something such as get out of the car or go through the door. Then instead of re-prompting 2 seconds later (because those 2 seconds might have felt like a minute) I counted in my head. I never got past 15 or 20 seconds before she completed the action of her own accord. If I hadn't been counting internally that time would have felt like forever. As one of my best friends lovingly reminds me, "patience, grasshopper." 

Venice in a nutshell... one of the craziest, most wonderful places I have ever seen. I love small streets in between old houses and Venice takes that to an unparalleled extreme. It reminded me of the movie Labrynth. Often we would think we were coming to a dead-end and then discover more streets that were invisible from a distance. Other times we would expect more options and instead find ourselves with no choice except steps into a canal or to turn around. We stayed at a lovely hotel that was only a 5 minute walk from Rialto or from Piazza San Marco, 2 busy hubs of activity, and yet our street was very quiet. We were also 30 seconds away from a delicious restaurant that was quite visible on days when they were open and completely gone without a trace on the days they were closed. Gone. As in, no sign, no menu outside, no way to ever guess a restaurant existed. 

Carl rowed in the Vogalonga, a festival-type regatta where they close the canals to motor boats for part of the day. Thanks to connections made by one of the Pittsburgh rowers who is from the Netherlands, Carl and 4 other rowers from Pittsburgh were able to borrow a boat from the Netherlands team. The day before the race they practiced and took the spouses who had come along out for a ride. Totally wonderful. It was beautiful and it was also wonderful to see how the communication and coordination worked so well among the rowers. The Vogalonga itself is a very long race and with 1700 boats or so, things got rather backed up at various points. Carl even made it into one of the newspapers! His boat was in a picture of one of the traffic jams. 

We did lots of walking, lots of relaxed eating, lots of laughing, lots of reading, and lots of sleeping through the night. We went to a concert of Vivaldi's "Four Seasons" that was probably one of the best concerts I have ever attended. It was in a small church so it was an intimate setting with excellent acoustics. In one of the museums we also accidentally and fortuitously happened upon a harpsichord duet. So much of Venice is still at least 500 years old that I really felt like we could have been there during any time period and it would have felt similar.  The history, age, and ornateness of some of the buildings was staggering. I have never seen such beautiful mosaics as they have in the Basilica of San Marco. And I have never seen such gilt ceilings with paintings covering every inch that wasn't guilded. If you ever get the opportunity, I highly recommend going.

May 12

This week we got roughly 29 hours. We've had some exciting moments, but the salient feature of this week for me has been lots of thinking. I have been thinking a lot about time. We are giving Sarah the gift of our time. Our Amy volunteers give the gift of their time. What do I want for Mother's Day? time. What do I not give myself much of? time. With the last question what I really mean is that I don't give myself much time to reflect on things and question my beliefs (using the Option process) as much as I would like. So this week I decided to spend more time letting myself just think.

Sarah has been amazing with the marble run game recently, in part because I changed my responses and requests. She often points to a picture on the box and says "that one" but then starts building something on her own. Lately I have been asking if she really wants to build "that one" and telling her she'll have to follow my instructions if she wants to build it. Twice she has stayed with me, with some reminders, and built a complicated marble run 95% on her own, with my guidance. That takes both dexterity and attentiveness. 

Carl noticed an improvement in her saying the alphabet with him (not just on her own). When we really clarify specific goals and the whole team works towards them there is always improvement. This helps me realize again and again how important my own clarity and direction is in terms of helping Sarah. 

I had a consultation/dialogue with M. on Monday and was able to notice how much I have felt I need to control Sarah's progress and healing in terms of eating, leg rashes, and potty use during the night. I let go of a lot of that, especially my need for speed, realizing that it is Sarah's journey. That night marked the first time ever for night-time potty independence. Coincidence? Or because I let go? Perhaps this is more evidence that the more I clear my own stuff the more easily Sarah can flourish. Dang/Yay!

I have been noticing how I still have layers of internal stuck spots of feeling like I need to fix Sarah and need her to be normal and need that to happen soon and at the same time need to be perfectly loving to help her get there. I have been fundamentally believing that if only I did a better job then she would be normal already. And that this is the goal. What if that isn't the goal? What if the goal is to be really present and loving and accepting, while having the goals of helping her develop and learn for the sake of being the best Sarah she can be? I know I come back to this theme repeatedly and that is because it is the crux of this whole business. Can I have a goal of Sarah being typical while at the same time not needing that in any way? and why do I feel like I need it? want it? 

At least once a day Amy has a time of crying broken-heartedly about needing help. I so understand this. I think that is what I do when I am feeling like I should be doing more. I'm inwardly a similar broken record about needing help and a similarly frozen person, not moving forward and just feeling yucky. With Amy I can give her compassionate space for the feelings (most of the time) and trust that she will move through them and then be her amazingly capable self. What would happen if I could give myself more space to be where I am, knowing that I always do move forward? that has to be the start. I attempted a small dialogue with myself (please read gently)...

what if the program you are running now is enough?

that brings me back to the deep belief that it's not enough and that I should be doing more and that there is something wrong with me that I'm not. 

Why is it not enough? what would be enough? 

enough would obviously be whatever is needed for Sarah to be typical by the end of the year. 

why by the end of the year?

because we have to hurry! It has to be soon so that I know this is the right path

so only the end result of normalcy will tell you this has been the right path?

apparently.

Sarah's learning to speak and connect more socially, what of that?

well, yes, the path worked well for that. but what if I had done something more that would have helped even more? or if I could only do SR even more fully and perfectly then it would be the right path. so it can be the right path but I might not be doing it right

why do you believe that?

because then it gives me the illusion of control

why does S need to reach a certain level of development for you to feel ok about yourself?

because I'm Jenny and I'm supposed to have perfect kids; this wasn't supposed to happen with S having delays so we have to  hurry, hurry, hurry to fix them - in a relaxed loving accepting way of course. :)

what if S never progressed further than she is today? could that possibly just mean that she never progresses past where she is today? and not reflect on you as a parent or person or your abilities?

I'll work on it. Not there yet to let myself off the hook that easily. because if I accept that then maybe I won't keep working to improve the program and myself

do you believe that?

I might actually relax more and not try so hard with some things, which I know might actually be beneficial in some way. I think if I accept things as they are without needing them to change then I'll actually have more energy, but I still feel an element of wanting to peek to see if accepting is the trick and then she will be normal faster. So a belief to affirm is that it is 100% ok if Sarah doesn't change at all from this day forth. 

I feel kind of stuck with this dialogue. Maybe this is why people pay other people to help them! As I reread it a few times I can see that there are other questions that I could be asking of myself, but I'll keep those for another time. It is still quite clarifying to see where I am feeling stuck and notice that those are beliefs that I could decide to change. 

One more thing that came up this week was that another parent of a kid who isms (but not a Son-Rise family) said they were told by the NACD (National Association for Child Development) that isming could damage the nervous system because it reinforces non-typical neural pathways. When they stopped their daughter from isming, and presumably implemented the other recommendations of which I have no information, their daughter progressed quickly and dramatically. With this information I felt thrown for a loop and started questioning if my chosen path was the right one, etc. Upon giving myself time to explore this more and ask myself what I believe, I came back to my deep belief in the Son-Rise Program. Some of the people in this world who have done some of the most amazing things in terms of helping people are Bears and Samahria. I want to follow that path and trust it and jump in with both feet. I want to embrace Son-Rise even more thoroughly. This means doing more dialogues and giving myself the time to become clearer. Bears has said that there are many different ways to climb the mountain and that it is most effective to choose one and embrace it fully. So, while I will incorporate things (such as GAPS) that can supplement Son-Rise, I am not looking to change my path. If anything it's time to get out the map again and make sure I'm using all the guidance available. My time is precious and if I am going to spend it reading and watching videos to learn more and be inspired to be more effective then I want to spend it doing Son-Rise related reading and viewing. And I can let other parents choose their own paths without needing them to do SRP to help me feel good about my choices.

Before each SR training course there is a questionnaire and one of the questions posed is something about whether it is more important to me that my child recover or that I run the Son-Rise Program. The first time I answered recovery. The second time I might have had the same answer. The third time I think it was the SRP. With some fears that I'm still not doing it "right" (whatever that ultimately  means), I realize that my answer now is running the SRP. I happen to believe this is one of the best ways of helping Sarah. I also believe it is the way to help me have the life that I want and clean out the emotional cobwebs. While I want the absolute best for Sarah, I want that to the inclusion of what is best for the rest of the family. The rest of us matter too. I would really like to step off the hamster-wheel of cycling doubts now (this involves questioning and fearing more than questioning and answering). I see that the only way to do that is to choose to do it and have hopeful faith that I am steering this ship in the best direction. 

I know I come back to all of these themes and thoughts a lot. I share them because it is where I am on this journey and I want to remember it. 

May 5

This week we got 13 hours and 45 min. This past month has been rough in terms of getting regular hours. It was just a month ago that most of us were dealing with a tummy bug; 2 weeks ago Sarah had the episode of anaphylaxis, and now this past week Sarah, Amy, Sonia, and one of our volunteers all had colds bad enough to cancel most SR hours. Sarah is also dealing with seasonal allergies that sometimes are so intense that even Benadryl doesn't do much. We have some new options to try and the worst seems to be over, but it all resulted in a week that didn't have much SR time. Somehow I have managed to stay healthy this time around and I hope that can continue. As with other times when Sonia has been away, it is a good reminder of how helpful her presence is. I can do the housework, etc, but then I'm not spending as much time with the girls, and I'm not getting my usual number of SR hours, never mind the SR hours that Sonia usually does. I'm looking forward to everyone being healthy again.

I am also looking forward to a handful of potential new volunteers. I signed up for a service through ASD Climber that matches families running Son-Rise Programs with people who want to be Son-Rise volunteers. Within a week of my posting an ad I had 4 inquiries, two of which are strong possibilities and I'm interviewing them today. So if any of you who read these updates ever want to be involved (or know someone who would like to be involved) with someone's Son-Rise program let me know and I can get you connected to ASD Climber and I can post on the Son-Rise Facebook groups. There are Son-Rise families all over the world.

Sarah understands and repeats language so much more rapidly and clearly than she used to. Yesterday Sb said that she was going to take a friend to the airport. A moment later Sarah said, "take fend to duh air-port." I want to be clear that Sarah is not and never has been echolalic (repeating what she hears without spontaneous creation). She repeats a lot of what she hears but she also creates new phrases or uses old phrases at new times. It is thrilling to me how much she tries to say any new word or phrase that she hears. 

Another exciting moment that shows how much our little sponge absorbs happened yesterday. I brought a lilac bunch into the house to see if that was problematic for Sarah's allergies (we seem to be ok). Sarah looked at it and said "fuh-lower." Then she pointed to the stem and leaves and said "stem... leaves." Sb has been drawing flowers and explaining the different parts while drawing. I love that Sarah could understand that so far as to then apply it to a real flower. 

I have been noticing how I can handle certain things the kids do much better than some other things and I'd like to get more relaxed across the board. When Amy is asking for help moving a large stack of books that she just created, I know that she can move the stack the same way she made it and that she doesn't need my help. So I don't help and she cries buckets and buckets of tears and I stay relaxed because I know my response is actually reasonable. This points out that the times I get more flustered I must be doubting the reasonableness of my responses. When it comes to potty times or meal times or dealing with middle-of-the-night anything, I am much less relaxed and get much more annoyed at my children because deep down I feel like I don't know what I'm doing and should probably be doing something different/better. This week there was a lot more time of just the girls and me. One day around a meal time, and with both kids wanting things and being upset, I just had nothing left. I sat in front of the fridge (to block Sarah's repeated attempts to get something I didn't want her to have) and the girls sat on my lap and we all cried together. I was actually sort of pleased that I could soften into tears instead of yelling at them. Plus my crying definitely got their attention and I could talk about how sometimes I feel sad too and that that is ok. 

We have so many amazing moments and so many wonderful times when my heart is full of the wonder of my girls and our amazing life. And there are so many times when I am tired and don't want to be running this restaurant for tiny people and I don't want to hear "hep, mom...hep, mom" (help, mom) a million times an hour from Amy and I don't want to have the circular conversations with Sarah asking for something she can't have for whatever reason but she just keeps asking no matter how much and how differently I explain or how much I don't respond. There are times that I can (and do) handle all the mess, requests, tears, yelling, etc with grace and ease and no ruffled feathers. And there are times when my feathers are down right bent. I'm not sure where I am this morning. Maybe I'm in the middle. 

May your feathers be easily where you want them.

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.