December 19

The day after I sent my last update I did receive an email from my crush school explaining a little bit more. Apparently their actions were in response to how much they thought I was clear that I didn’t want Sarah to have a helper. While it is true I hoped and thought she might not need one, I still think it would have been nice for their first move to have been asking me if I was sure about that. I do feel at peace about the situation at the moment though.

You may remember that there was one more private school for me to visit in case it would be a good fit for Sarah for next year. It was a lovely place and I’m sure it is perfect for some people. It would not be perfect for Sarah. It would be too easy for her to leave given her love of stairs and doors and that they can’t constantly monitor the entrance/exit or her. 

I have emailed one of my public school contacts about what our next steps should be to reenter the district (since we are in the homeschooling division at the moment) and what we need to do to get her reevaluated. I haven’t heard back but I won’t email again until January. Carl made some good points about how just because we are moving to enroll her in the same type of class that she would have been in before we did Sarah-Rise, it doesn’t mean that Sarah is the same as if we hadn’t done our program. Written out or stated this is obvious but in my head/heart it wasn’t quite clear. 

Sarah has had long hair for a while and she has protested about getting her hair washed, brushed, and ponytailed. Whenever I would ask if she wanted it cut short or to keep it long she would say she wanted it to be long. Apparently she always told Sonia she wanted it cut. This week she told us both she wanted it cut so we took her to a hair salon. She had enough to donate so we did that. Then we went to a coffee shop and got juice and organic fruit pouches that Sarah could have! 

One night I was fixing dinner and I told Sarah she could tell Amy that dinner was ready. Sarah promptly ran upstairs calling, “Amy… dinner is ready.” This is new. This is awesome. 

Carl has specialized in giving the girls cat rides when it is time to go to bed. He pretends to be a cat while they ride piggie-back (cat-back). When that option wasn’t available I offered mom-cat-snuggle rides. I carry them in my arms, meowing and purring and nudging my head against theirs. A couple of times during these rides Sarah has said, “I love you so much.” I don’t know if this is what she wants to tell me or if she is saying what she expects me to say to her, because I often do. Either way, I’ll take it! Amy often also says “Mom, I love you” and that I know is intended for me. Melt, melt. Purr, purr.

In my contemplations of life, death, time, and memory, I have realized that there are things about life at the moment that I won’t remember in the future. I no longer remember the details of particular high school homework that might have seemed all-important and stressful at the time. I no longer remember specific moments of hurrying out the door to pre-school a few years ago. Sure, I know I did stress about it and rush people, but the actual details are gone. This means that I can actually perhaps relax more in the moment now. Because I won’t remember the details later. I will probably remember an overall sense of stress or ease and I would like to cultivate a memory of ease. In many small moments this week this has helped me be more relaxed, whether it is about leaving on time, being with the girls in a moment of their distress or play, or spending extra cuddle time rather than doing some items on my to-do list. In a month or a year I won’t remember whether I cooked the fish on the day I meant to, but I hope to remember a general feeling of easy connectedness with my loved ones.

I won’t write an update next week due to the holiday extravaganzas about to ensue. May you all have a wonderful couple of weeks.

December 13

In the past week, basically on parallel hospice timelines, I have had two people I care about die. One was unexpected and someone my age. Another was a family member who lived a wonderful, long life. I’ve been thinking a lot about life and death and how we move through life and emotions. I didn’t have many moments of deep sadness but I had moments of just feeling like I didn’t have energy to do a lot and just wanted to sit. I decided that was ok and just to go with it. I have been gentle with myself and also had times of feeling like I should use every minute to the utmost and always be loving and patient because you never know when a moment is your last. True. And yet, that was a lot of pressure to feel like I should be perfect all the time. Then I returned to being ok with it all, or trying to be ok with it all. 

I had a wonderful and helpful talk with M. She helped me see how I was holding myself and our SR program to such high standards that I was being immobilized due to the pressure I was putting on myself. I also realized that it is ok that I don’t really do time in the SR room anymore because one goal of the room was to help Sarah not need the room. So if our time now looks more like playing a game with Amy a few times a week and knowing what a big deal that is, then that is amazing and it still certainly counts.

After much thinking I decided to write an email back to the school that had broken up with us over email. I said I didn’t want Sarah in a place where we had to fight to get her in so I’m not pushing back against their decision but I did have some questions. I asked my questions. I just want to understand more of what happened. They would have gotten the email Wednesday morning. I have not heard anything back. That rankles almost more and I have been crafting imaginary next steps, but perhaps my energy would be best spent by letting it go fully. I have considered writing back again saying, “here is the email you could send me…I’m very sorry if it felt abrupt and I don’t have answers for your questions. I still wish you well.” Even if they don’t have answers that they want to share it would be nice to get a response rather than being ignored. I just don’t understand ignoring me. It may be uncomfortable for them but it doesn’t take much effort to write back and it is a pretty loud response to ignore my email.

Thanks to one of you lovely readers I found out about another private school in the area that I am going to investigate. It is very non-standard so I think it will either be perfect or not at all a good fit. I will visit on Tuesday.

One of the best parts of the week was when Sarah’s card arrived in the mail. For kindergarten, each student got to write a card to someone of their choosing and it got mailed from school. Sarah chose Amy. I believe she wrote it all herself with maybe the tiniest bit of help. I think it says “My dear Sii [sister] Amy Merry Christmas Love, Sarah.” Oh my goodness!!!!!!!!!!!!!!!!!!! Love, love, love, love, love!

December 7

I’m getting over a stomach bug and I think I have also been putting off writing this update because it feels large and weighty. But here we go…

Sarah had an OT evaluation at the Children’s Institute and she definitely qualifies for OT help. We just have to wait for the forms to be filed and for scheduling to call us. I was very impressed watching Sarah do some of the tasks they had her do, such as cutting out a square that they drew on paper and catching balls of different sizes. Her skills were much stronger than the last time I had seen her do them, which was possibly months ago. 

I had a dream school and a dream vision of Sarah’s future schooling at this dream school. It is a small private school. I had really really really hoped that Sarah could go there next year, maybe repeating kindergarten, and then continue forward, all without an assistant. I met with some people from the school and they seemed open and willing to consider the possibility. We scheduled a three-day visit, building the number of hours she would be there, because I knew her first day might not be her finest. Last Thursday she had her first day. It was her last day too. I got an email a few hours after her visit and the school said they don’t feel that they are the right place to meet her needs. They are good people and they are a good school and I am still a tiny bit heartbroken and disappointed. I feel like my crush broke up with me over email. I am trying to not feel too bitter but also wanting to allow myself the feelings that I have. 

I have a multitude of reactions…

1. Drat! 

2. NOW WHAT?!?!?!?!?!

3. I work so hard to have our life feel normal, to see Sarah as normal. Of course I know she is older than her classmates at school and at gymnastics, but she is able to be there with either no help or minimal help and so I feel normal. It all feels good. I explain all the time that she has special needs and that I run a program to help her and yet…I hate having it shown to me by any other mirrors that she is not the same, that she is not catching up, that she may never catch up.

4. I am not sure I have the energy to keep doing any more SR in a big way. I don’t feel like I want to be in the room. I don’t want to plan a program. I don’t want to homeschool. I don’t want to figure out ways to make the team stronger or more effective. I just want to be done. I’m worried this means giving up. I worry this means I am a failure of a Son-Rise parent. Am I deciding this because it is ok and makes sense? If I put her in public school in an all-special needs class then am I giving in to the idea that she will always have special needs? Am I endorsing it or accepting it in a healthy way? I feel disappointed in myself for giving up, but I feel like I am lying down by the side of a marathon course and I am just all out of juice, which also has me thinking I must be a SR failure. I know this isn’t a fair perspective and I know I shouldn’t compare myself to other SR parents but I do and feel less than up to snuff.

5. I am so thankful that someone at some point said there must be a place for education for everyone. I am so glad the public schools provide such a place and that Sarah will be welcomed, despite our back and forth dance the past few years where we haven’t used their services. 

6. I think Sarah is actually ready to take in her schooling in the public school Life Skills class in a way she wasn’t ready for in the past. Maybe everything has gone perfectly and is going perfectly. She has to be evaluated now to see what she qualifies for. Should I hope that somehow she doesn’t qualify for the Life Skills class because of being so skilled? No! Because I want her to have the small class size and extra teachers. Will they let her be in first grade as I request? Or will they put her in 3rd or 4th grade because of her age? (in which case I suppose I can brag that she skipped some grades)

7. There are some skills for which I was the best teacher/SR leader for our team of teachers for Sarah (speaking, eye contact, playing games, imagining, reading, potty training, interaction). There are some skills for which I think I am not the best teacher or team leader and that Sarah has an easier time in a structured environment with other teachers (the rest of school academics and skills).

8. I am really hoping that when we reenter the word of IEPs that I can maintain the confidence and vision I have felt as an SR team leader and still influence the decisions made regarding Sarah and our goals for her. I hope we can keep going with our SR skills to supplement her schooling and help her powerfully with any and all goals that we set. 

9. I’m still feeling disappointed with the situation and myself. (could it possibly be ok not to be disappointed? just to see our situation as our situation and not compare to anyone else and just celebrate our successes and where we are? maybe. I’ll consider it.)

10. I’m feeling like everyone else is moving on and we are back here waving goodbye. 

11. I am forever grateful for the SR years and especially this year of kindergarten that feels like a microcosm of perfection and welcome and home.

12. I love how even when I am feeling like a failure for not continuing until Sarah doesn’t need any help and can enter mainstream school, Sarah bombards me with examples of how awesome she is and how much she continues to progress…. Twice in the last week she requested to play a game with me in the family room and we proceeded to play an entire game with Amy as a third player. We played Quack Quack and Pengaloo. She asks questions all the time “Where is …?” and “what is this?” The idea of her asking questions used to seem laughably far off. She has even more crazy strong moves around the gymnastics bar. Carl and I look at each other and say, “remember when she couldn’t lift her head?” I know there is a time when all of us couldn’t, but for Sarah it lasted a very long time and seemed scarily questionable in the early days. Regardless of how I frame everything, no one can take away Sarah’s current skills or tenacity for learning and for life. Thank goodness she has herself to keep things going even when my energy flags.

In other news, we have added bananas and that seems to be ok! I just tried prunes for her yesterday so after a couple more days I should know if those are ok. 

I wish you all wellness and space to be with any and all feelings no matter how much they seem to storm and rattle in different directions.

November 29

We had a wonderful and relaxing Thanksgiving. I am so grateful for all of the blessings in my life and that includes all of you dear readers.

A week ago, Amy was eating muenster cheese. Sarah tried to say the word and had a tiny bit of difficulty. Amy said “muenster. try it, Sarah.” Amy meant to try saying the word. Sarah thought Amy was offering her the cheese to try. Sarah responded, “I am allergic to muenster.” Amy was upset at the misunderstanding. I was thrilled that Sarah answered as she did because that means in other situations where I might not be present she may answer correctly and safely. 

For our Thanksgiving feast I found coconut milk ice cream that Sarah can have. From a store!! That I didn’t make!! I enjoy making my own foods from scratch but I also enjoy the freedom and flexibility of being able to purchase things already made.

On Friday I made whole wheat bread so that Sarah could try it. Using my own (my mom’s) recipe allowed for the most control so the wheat was the only new ingredient. Sarah had one piece Friday night. She hasn’t had any more and I think she hasn’t had a bad reaction. Not that we need to go crazy with the wheat and the gluten now, but it opens up more freedom in our life and in Sarah’s food options, especially when traveling. 

I continue to learn how much I don’t know or understand about the ingredients in various soaps and lotions. Since the Rodan + Fields lotion that seems to work is also rather expensive, I wanted to try a different option just in case. I tried Curel Fragrance Free lotion. After a couple of days Sarah had finger blisters so no more Curel. Then I made the mistake of trying a new lotion and a new soap in short order. I wanted to add another component to the Rodan + Fields since their products are designed to be layered for the best results. So I tried Soothe 2. A couple days later I changed our hand soaps to Kiss My Face Olive Oil, which only has about 4 ingredients (because while the Vanicream seems pretty good it does seem to still dry Sarah’s hands more than I want). More new blisters! I’m not sure if it was the Soothe 2 or the soap. I switched back to Vanicream and Soothe 3 only  until we are back to a relatively neutral state. Then I will try a soap that I found online that only has 3 ingredients! I actually found many soaps that seem like good candidates. 

I made a huge spreadsheet and put in all of the ingredients in the soaps and lotions we have tried. I have realized that I don’t know what most of the ingredients are. I also realize that an overlap in ingredients in products that don’t work doesn’t necessarily mean those are the offending ingredients. Almost every product also has some ingredients that don’t overlap and maybe some of those are the problem. That said, I did notice a high correlation between the 365 fragrance-free foaming soap and the Kiss My Face Olive Oil soap, both of which are suspect. While at times this feels overwhelming and frustrating, I mostly feel very excited to have realized that I need to research and control what Sarah uses for soap and lotion. This could be a game changer once I figure it out. I may travel with a bar of soap in my purse and an extra tube of special lotion so maybe I will need a bigger purse, but if that means we can mostly avoid blisters then that would be amaaaazing. And if this means that all the times I thought foods were causing the blisters and they weren’t then that means we can retry so many foods!! BANANAS here we come!!!! (but not right away).

Sarah made a turkey at school where each feather had something she was grateful for. One of her feathers had the word “Amy.” When Amy and I saw this we were very excited and Amy repeated several times “that means Sarah likes me!” I think it really meant a lot to Amy. Sarah was also thankful for her mom, dad, food, and ipods. :)

Yesterday Carl and Sarah were looking at family photos on the computer and listening to her favorite music. Carl also had his work laptop open. Sarah was trying to close the laptop. Here is their conversation:

Carl: No Sarah - you need to leave my laptop alone

Sarah: (mad whimper)

(time passes)

Sarah: When Sarah gets older, be Dad. When Sarah grow up, be Dad.

Carl: Oh - really? You want to be like me when you grow up?

Sarah: Yeah

Carl: Oh - that’s great. What would you like to do when you grow up?

Sarah: Shut the lid.

November 22

Sarah’s hands are much much much better. I have been using Rodan + Fields Soothe #3 on them. This is not a cheap solution, but it is the only lotion (so far) where Sarah doesn’t say “it stings” when we put it on and the only one where she doesn’t seem to get new blisters while healing the dryness. They still aren’t 100% and I still don’t know if that is a contact allergy or winter dryness or possibly a reaction to eggs. We are still doing eggs. There is no overt reaction against them, there may be no reaction against them, and I certainly don’t want to admit to noticing any reaction to them if there is one. This hand skin sensitivity makes it much harder to just go by skin reaction as a monitor of how Sarah tolerates various foods. I think her body will just have to speak through other venues if there is a problem with eggs. I haven’t tried any new food beyond eggs because I want to give her body plenty of time around any new adjustment. I am still chomping at the bit to try new foods, but fortunately my trusty advisors (Sonia and Carl) hold me in check to go sloooowly and not do anything to jeopardize our Thanksgiving experience.

Speaking of eggs… I so love being able to give Sarah scrambled eggs! She loves cooking them. It is fast, fresh, easy, healthy protein. I love being able to cook light, fluffy pancakes with eggs! The recipe I use (grain-free, dairy-free) was one of the few that just couldn’t make the transition to no-eggs. I had invented a different kind of pancake with zucchini and sunflower seed butter that didn’t need eggs and was delicious, but you did have to slightly stretch your definition of a pancake. The coconut pancakes with eggs are so pancakey. Sarah ate one, asked for another, ate it, and then declared that she didn’t like them. I think that was a response to her belly still recovering from a tummy bug rather than her not liking the pancakes.

Carl and I decided yesterday to change how we are doing the word packs for Sarah’s reading practice. We are retiring all the word cards made on poster board. The new packs are on index cards and we are back to single words. Originally, I didn’t do words that were similar (hat, cat, sat) because the program we were following advised against it. Now, Sarah is so amazing with getting things from their context that we want to have words that are similar so she has to focus on the letters she sees. We want to help her a bit with the phonics aspect so she can figure out new words. Did you know there are a ton of words that sound like I? aye, by, buy, bye, cry, die, dry, dye, eye, fie, guy, hi, high, lie, lye, my, nigh, pie, rye, sigh, tie, vie, why. Tell me if I am missing any. I also did a few packs of fruit and vegetable themes. I am amazed at how far Sarah’s reading has come in less than a year. I am so very grateful to the friends who introduced me to How to Teach Your Baby to Read. 

The girls went with me to Bed, Bath, and Beyond to get a soap dish. On our way through the store I paused when I saw a nesting set of kitchen bowls in pretty colors. I exclaimed delightedly, “these are so fun!” The girls then stopped at just about every item to exclaim, “this is so fun!” If I was going to say something so memorable I’m glad it was benign. :)

I hope your weekends are so fun!

November 15

Thinking about William has helped me focus more on choosing love. In practice this has meant that in many small moments when normally I would get mad or tight, I have been softening. I have had some grumpy moments, but they have been smaller. What I really celebrate are the small moments in which I did things differently than my initial impulse would have me do. A week ago when I really yelled at the kids I spent a lot of time thinking about why I yelled. I was able to accept myself in a more loving way than usual and that gave me room to reflect more fully. The main thing I learned was that I yelled because I wanted the yelling/whining/behavior to stop, but that when I yell that actually prolongs things and that if my goal is to shorten the sound or behavior then softening and coming closer with kindness will yield faster results. 

On Wednesday I did some SR time in the room and it was wonderful. As you know, I don’t do that very often anymore. What I appreciated this time was the awareness that there can be an indirect magic to the room. We didn’t work on many specific skills, but we had fun together and that helps our overall connection. That night I was singing the songs to Blue Moo by Sandra Boynton and Amy started singing with me and then Sarah did too! Wow!!! I don’t know if that was because of the time in the room. It might have happened anyway. Maybe this is just two wonderful things. 

The girls sang happy birthday a couple of times this week and Sarah’s singing was the best, most fluid I have ever heard her do. It was almost as fluid and focused as Amy’s singing. I say that so the comparison can give you a sense of Sarah’s fluidity.

Thursday evening, Sonia and the girls danced around to songs with movements while cleaning the family room together. For an hour! 

Yesterday, Carl was outside with the girls and one of our neighbors was outside too. Sarah went up to her and said “say hi to ___” (the name of the neighbor’s son). So the neighbor invited all of them to come in to her house and find her son. 

A little bit later when Carl and the girls were outside again, Sarah said she wanted to climb onto the hood of Carl’s car. He said no and then turned his attention to Amy. A minute later Sarah was on top of the hood. When Sarah climbed down Amy tried to climb up but couldn’t do it. She said, “Sarah” and Sarah started helping Amy climb. They were informed this was the first and last time this activity would happen, but it was an awesome and hilarious moment.

Yesterday evening Carl and the girls all played Candyland together. All the way through. For real. Sarah needed some prompting to go when it was her turn and in what direction to move, but it was just verbal help. Wow! 

Sarah’s hands are still a bit dry and scaly but I decided to move forward with new foods because this does seem like a different beast than a food allergy. I spoke with a friend who has the same eczema as Sarah and got lots of ideas of what soaps and shampoos might be the least irritating. I am also thinking we need to reduce Sarah’s handling of wipes.

Eggs! We tried eggs. The naturopath had recommended a certain way of reintroducing foods where we give Sarah the new food 2 or 3 times on day 1 and then take 48 hours off without the new food, paying attention for any changes in Sarah. Friday afternoon she had scrambled eggs and Friday evening she had cupcakes made with eggs. After the scrambled eggs I explained that she should tell me if she felt sick or anything. After about half an hour, Sarah said, “Mom, I am feeling sick.” She was watching a show with Amy and was reclining on the sofa. I asked if she thought she was going to throw up and she said yes. After a little bit if time I reminded her that if she was truly sick then we wouldn’t be doing the cupcakes made with eggs but that she could have something different. A few minutes later she was up and about as her usual self. She may have felt sick or that may have been a fabrication. When she told me she felt sick, her sentence was a little too perfect. I think that next time we do a new food I shouldn’t tell her to tell me anything. Sarah does have a renewed itchy area on both sides of her right wrist. I don’t know if this is from the egg or not, given our previous experience and her general skin sensitivity. So I think we can give eggs a big maybe. 

November 8

When I read the news of William’s death I was at home helping the girls get ready for the day. Thank goodness I was. I started crying hard as soon as I saw the subject line. The girls were so sweet. They just sat with me and listened and gave me hugs and kisses. Throughout the day Sarah then wanted me to watch the tribute video because she was interested in watching me cry. That day I had much more time with Sarah than I normally do and that felt like just the right thing. I also had time to just sit in the sun and think and be. That felt good too. I have been deeply joyful that William existed and that I had the honor of learning from him on multiple occasions. I have also felt quite sad, not comprehending how such an amazing and wonderful person isn’t here in his same form any more. I like to think that maybe all of the world is a better place with his spirit now spread throughout. It has been a beautiful experience to share sadness, joy, and celebration of William with families all over the world. 

I have felt re-inspired about helping Sarah in a way that I haven’t felt in a long time. It is suddenly clear that I want the big focus for her team to be math and writing. These are the academic areas that would help the most as she moves through school. We will do this as we have worked on other skills, following her lead, using her ideas, celebrating all of her efforts and participations. And we can do this! I fully believe that we can, that she can. With talking and reading, once we figured out the teaching that worked, it was like turning a switch that started a snowball rolling quickly down a mountain and getting bigger with each moment. 

With reading, we are in a review period. We are rapidly going through all the old word cards. I change 3 words per pack per day. In a conference, her teacher said, “Because Sarah can read…” !!!!!!!!!! Yes, it is at a beginner level, but still!!!!!!!!! Up until this point I had it in my head that Sarah is learning to read. This is true. I hadn’t let myself fully cross into the words “Sarah can read.”  She has been reading one of our books all by herself. It is one that is easy to memorize, but it is still clear to me she is reading it and not just reciting. With the word cards, it is clear that Sarah is transferring her memorized words into recognizing parts of words (eg.- ing) and looking to the first letter to help her know how to start. 

Last week I thought vaseline was helping Sarah’s hands. Now I think it may have helped some but not fully and it may have been clogging her pores and creating more blisters on her arm. I switched to just my regular hand lotions and those plus time seem to be the best helpers. I also did some research about what causes dyshidrotic eczema. It can be related to seasonal allergies but it can also be from too much exposure to chromium. I’m not sure if this just means topically or not, but I looked into her supplements and all together she has been getting close to 600% RDV of chromium. ?!?!?!?! Ack. I am super excited to maybe know the cause of the finger blisters and I am also feeling mad at the doctor and at myself for not figuring this out sooner. I am trying to remember we are all just people and none of us is perfect, but I am mad that maybe we have been giving Sarah something designed to help her body and that maybe it has in fact not been helping! I am also so impatient to try eggs. If the hand blisters aren’t related to food then why wait? Except that it seems like a good idea to have as clean a slate (as healthy a Sarah) as possible before adding anything new. The question is why the anger? is it to punish myself so I don’t make the same mistake in the future? is it to make it ok that I messed up because at least I’m upset about it? as if it wouldn’t be ok to just be excited to know what maybe has been amiss? I will experiment today with letting go of feeling angry and stupid. Or, if I do feel that way I will be ok with feeling that way.

We had company over for dinner on Friday night and when it was time for the girls to go to bed, Sarah spontaneously turned to the company and looked at them while waving and saying, “goodnight.” Awesome!!! 

One morning, as I ate breakfast and talked to Carl, Sarah came over, nudged my arm out of her way so she could get closer to me so she could look me right in the eye, she said, “I have kindergarten today.” Wow! These are small representative moments of what is becoming more of a trend in her communication.

Sc did her Sarah-Rise session yesterday with Amy in the room the whole time. It went well overall. Sarah did have some times of not liking what was happening, but that is the perfect setting for working through little upsets.

This morning, Amy made a cake out of play-doh and started carrying it around the room singing to the tune of happy birthday, “happy love day to you.” 

Happy love day to you.

November 1

We had the best Halloween yet! By best I suppose I mean most typical-feeling. The weather was good and we were ready at the very start of trick-or-treating. Instead of all of us going, Carl took the girls out and I stayed home to hand out treats. Carl was able to stay back on the sidewalk while the girls went up to each house, interacted with our neighbors, and then came back to him. Sarah did try to eat some of her bounty immediately, which was not ok, but she accepted the repeated reminders. When the girls came home they had dinner, a chocolate treat, and pumpkin pie. Sarah didn’t seem to mind in the least that I switched out her chocolate with a homemade chocolate. I also gave her lots of store-bought applesauce pouches, some freeze-dried strawberries, and maple sugar candy for future days. Amy traded a few things but I didn’t force any trading. 

The treats we handed out were fruit leather and stickers. I had picked fruit leather a few weeks ago, assuming that Sarah’s hands would be healed and we would be able to try it again. Her hands aren’t healed yet so she got stickers, but she was wishing she could have fruit leather. Amy and I talked about how there are certain treats that she got that she has to consume when Sarah isn’t next to her, such as any peanut items. I also suggested we do the fruit leather without Sarah just out of courtesy for her feelings. 

I am amazed at Sarah’s food flexibility. The times she most gets upset about food are when she can’t have one of the things she technically can have but she already had her serving for the day or I don’t want to make whatever it is. She is completely amazing at being ok with other people eating things around her that she can’t have. She accepts substitutes with grace and ease. I feel sad that she can’t have the fruit leather because for crying out loud it is fruit leather! It isn’t full of junk. It is fruit! But in the past I wasn’t certain if she had an itchy reaction to it so we really can’t try it now. 

Her hives or expanded eczema or whatever is going on with her hands and right arm continued through the week. I tried taking a break from the ointment from the dermatologist and then I tried reapplying it. I don’t think the reaction is against the ointment but I also don’t think it has been helping. We tried plain coconut oil and that didn’t seem to help at all. I decided to try good ol’ vaseline. I may be imagining things and the progress is slow if at all, but I do think the vaseline is helping. Please, please, please be helping. I am so eager to try new foods but even if we for some reason could never do that, I still want Sarah to have hands that don’t itch.

Yesterday we went to a Halloween party and there were a couple moments when Amy was very sad. After one moment I suggested that she might like sitting next to Sarah in a large toy car that had two seats. Amy readily went over saying, "sometimes when I’m feeling sad I like to do the same thing as my sister because that helps me feel better.” Oh my goodness! I love how mutually beneficial sisterhood is for my girls. It is often clear to me how much it helps Sarah to have Amy to play with and learn from. I love seeing how Sarah helps Amy too, especially in some social situations where Sarah is less overwhelmed and more confident than Amy.

Earlier in the week Sarah was under some cloth. Carl said she looked like a ghost. She said she was a progress bar ghost. Maybe next year she can be a progress bar (when you play music on a smart phone or something similar and see where you are in the song) for Halloween. 

Evidently there has been an activity for Sarah at school involving spelling and saying “e-a-t.” Sarah finds this uproariously funny and laughs a big belly laugh after she says it. She also likes to write it using her finger. She has expanded this on her own to spelling and writing other words. When Carl came home one day, Sarah said, “there’s Dad! There’s d-a-d Dad!” When playing with Sc, Sarah spelled and wrote “bus” of her own initiative. 

Sarah continues to fly through our recycled word cards, reading the “new” cards without help at least 50% of the time the first time she re-sees them.

On Thursday I will be meeting with some people regarding Sarah’s possible schooling situation for next year. I asked G. if he had any thoughts about this. One thing he said has totally shifted my perspective in an extremely helpful way. He said the question isn’t so much if Sarah is ready for a certain school, it is whether the school is ready for her. Yes!! I love this!! In the past there was a school that I considered an option that didn’t welcome Sarah and I have been harboring some anger and resentment towards them. This shift in perspective, that they were just not ready for Sarah, is so wonderfully freeing. It can also be applied to the school where Sarah has been and is: they were/are ready for Sarah. Yes, they are. And that is part of why I love them so much. Have I mentioned I love this perspective??

In general I feel like Sarah has been doing a bit more problem solving when left to her own devices. Last week when Carl was in the basement and I was at Zumba, Sarah tried helping herself to another slice of pea-crust pizza. This made a mess. Carl heard a tapping sound. When he investigated, he found that Sarah had gone out on the deck (opening two locked doors) to get the broom and was trying to clean the mess. 

I hope you all had wonderful Halloweens. 

October 25

The blessing of this week is that Sarah’s regular eczema on her fingers did not clear fully enough for me to try a new food for her.  This is a blessing because mid-week she got hives on her hands and inner elbows and we have no idea why. It could be the soap I started using for her in one of our bathrooms and at school, thinking it was a good one and perhaps it doesn’t work for her. Or maybe it was wearing a sweater (cotton) that we thought had been washed but then we found the tag so we realized it hadn’t yet been washed so maybe she reacted to some sizing chemicals or something (though she has worn new clothes before without ill effects). Or maybe it was the art projects at school with felt. Or??? I am so relieved that we hadn’t tried a new food though because if we had I would think this was due to the food when that wouldn’t be true at all. Then I wonder how many times in the past I thought she was having a bad reaction to a food and it was in fact something else mysterious. While this feels a bit frustrating, I also feel hopeful that once we get it cleared we can try all sorts of foods that I had written off before, such as currants, bananas, and fruit leather.

I recently took a class in Japanese Zen facial massage and aromatherapy. I learned about some oils and acupressure points to help with headaches, which I will use for myself, and for focus and sensitive skin, which I will use for Sarah. The approach was different from some of what I have learned in the past so I’m excited to try it. 

That’s about it. The main thing from this week was noticing how frustrated and helpless I can feel regarding my girls’ digestive systems and Sarah’s skin. I can feel like a failure for not paying better attention to more of everything Sarah contacts or for not regulating veggie and water intake better. The thing is, feeling like a failure just leads to me feeling mad and that doesn’t create a cozy or loving atmosphere. It definitely helped once I realized the upside of not yet trying a new food. The more I can slowly nudge towards more veggies and water while also staying relaxed, the better. It was also good to revisit the place of feeling so terrible because it helped me see that I haven’t been in that emotional place for a long time. And I didn’t stay in that low point for long. I have also been reminding myself that that point of Son-Rise isn’t that I should be happy all the time and am failing if I’m not. The point is to accept all of the messiness with love. We really are always doing our best, even if we look and feel like we are floundering. Let’s flounder with aplomb.

October 18

It’s that time of year again when I start visiting schools and thinking about what will make sense for next year. Sarah’s current school situation is so dreamy and perfect but the school doesn’t go beyond kindergarten. Visiting schools means that I often see that there is a disparity in what I dream Sarah is ready for and what she may actually be ready for. I worry about all of my past choices and current choices, while simultaneously wanting to roar like a mama bear (defending myself to myself) that I have made good choices for her and she is thriving because of them and that we can trust my intuition for moving forward. Then there is deciding what is best for Amy and what makes sense as a balance for both of them. As usual, it feels a bit early to tell how Sarah will be a year from now, and yet that doesn’t stop me from trying to know the answer NOW. I like to know things yester-minute.

One possibility that I hadn’t much considered before is that we could have Sarah repeat kindergarten but in a full-day setting with a larger class. This would be a new level of challenge but hopefully with enough familiarity and comfort with the academic portion that she could thrive. Then I think that she will be 9, and then I panic that somehow it is unacceptable to have her be a 9 year old in kindergarten because then even if she proceeds one grade a year beyond that she will be 22 when she graduates high school. And yet, what does that really matter? Aren’t we just trying to look at where she is and decide the next best step to help her learn and become ever more independent? What does her age matter if when she finishes high school she is as capable and confident as an 18 year old? 

So far I think we have been successful in creating a situation in which Sarah can rock. That is my main goal going forward. I want her to continue to rock it. When settings are overwhelming or over-exciting then it is harder for her to rock it. When she is in a comfortable setting without too much that is new and over-exciting, then she can continue to surprise us daily in tiny ways. 

I do not want to homeschool next year. I just don’t. I have loved running a Sarah-Rise program and doing what bits of academics make sense as part of a school/homeschool joint effort. I do not want to fully home school. Not even a little bit. It is good to come clean about this and realize that there are many options for schooling for Sarah. They may not always be my dream situation, but if homeschooling isn’t my dream either then there are other solutions. There is certainly more information to gather, more thinking to do, more growing to do. The thing to remember is that I am safe, and I’m not trapped, and the world is packed with good people who can help in various ways.

The ways in which Sarah has rocked it during the week…

With word cards we are now doing 6 cards per pack, changing two per pack per day, and using all cards that we have used in the past. She often gets the renewed cards right away without any help, which is super exciting. When she doesn’t know a word she often makes a good guess based on at least one more more letters in the word.

Sarah is getting much more fluid with her ability to ask questions. Monday morning she picked up a bag of coffee beans and said, “Mom, Granddad, what is this?” Indeed, it  didn’t have the word “coffee” anywhere except in tiny print within other tiny print. I was most amazed at her ability to address both adults in the room and then ask a question, as if it was the most natural thing in the world to do. 

Yesterday she ran out of wipes in the bathroom and went to the closet where we keep backup supplies, got the new package and then called for help because she couldn’t open the inner seal of the wipes package. The fact that she independently tried to take care of the situation seems amazing.

Last night I told her she could get ready for bed. She went upstairs and brushed her teeth all by herself, including going to Carl for help opening the toothpaste. She also independently thought to put on the hand cream that we just started using to help her fingers.

The cream seems to be helping her fingers! I took her to a dermatologist and the doctor thought her finger blistering and rawness is eczema and given that we hadn’t tried new foods in a while, it is probably due to excess hand washing or maybe certain kinds of soaps. I kept thinking it was a dietary response instead of a skin irritation to something external. The cream isn’t medicated. It is just a really great moisturizer without any scents or unnecessary ingredients.

The results from Sarah’s latest blood test are exciting and amazing! Supposedly the test is highly sensitive and it tests for allergies regarding gluten, eggs, dairy, and some other foods. The results were beautiful! No allergies indicated. This means that once her fingers are clear then we can slowly start trying foods we haven’t tried in a very long time. We can try dairy, eggs, wheat, rye, and corn. WOW! 

Sarah still often has some disfluency when she repeats a word over and over before completing her sentence or when she repeats a sound before completing the word. Sc. asked about how to help her with this and if it would help for Sarah to watch us say the word, just as we did at the beginning of helping her with language. What an excellent idea! I have tried this a couple times and it does seem to help. 

Now to be where I am and figure out the next best step so I can rock it. 

October 11

We are in the middle of a lovely visit with Grammy and Granddad. For many visits, the main thing Sarah wants to do is pretend to cry while sitting on Granddad’s lap. For this visit she is still wanting to do that but not quite as often or as persistently. Last night Grammy and the girls played a game together. While this isn’t a new thing for Sarah to do, it still feels exciting when it happens.

I have realized that there is a type of moment where I tend to get very annoyed and yell or be stern: when Sarah (or sometimes Amy) ostensibly wants a certain thing (eg. to go outside, to watch American Ninja Warrior, to play with her phone for 10 minutes) but she doesn’t do the thing she has to do first to get to the end goal. I bristle at the lack of reason, logic, and action. I threaten, I yell, I am probably less effective. These realizations came after a couple frustrating mornings and one frustrating evening. 

Thursday morning I had a breakthrough. I Son-Rised up one side and down the other for getting Sarah dressed. She happened to come upstairs on her own, but then went into the SR room. I scooped her up while celebrating how amazing it was that she came upstairs on her own. She liked my celebrations. While celebrating, I carried her to her room and asked if she could take off her pajamas by herself. She didn’t want me to celebrate verbally anymore so for each item of clothing I did big physical moves of cheering or I kissed her hands or feet or made big facial expressions of anticipation. She got dressed easily and we had a great time. Friday I was able to mostly do the same things. Some key factors to remember for school mornings: get myself dressed first, start a few minutes earlier than usual with getting the girls dressed, and be able to give 100% of my attention to helping them stay focused and celebrating their efforts. (writing this update was interrupted so I could help the girls get ready to go for a walk and I was grumpy and frustrated. So much for having figured it all out. At least I figured it out for a couple mornings!)

One evening when I was cooking dinner on the stove, the girls wanted to participate. I didn’t want them near the stove because hot oil was a bit spattery. I gave them a pan and spatulas on the counter and some green crackers (Lydia’s Organics) and Sarah-friendly toast. Amy normally eschews green crackers but she took a couple bites. I want to remember how eagerly they ate the contents of their pan when I think about making dinners in the future. Maybe I can more easily include them in some of the preparation and maybe they will try more things. 

A couple of weeks ago I read The Life Changing Magic of Tidying Up by Marie Kondo. I have been tidying and I love it. I love the freedom of getting rid of things that I was keeping out of various senses of obligation or just not realizing I had certain things. I am hopeful that tidying will ultimately help me be kinder overall because at least 1/3 of my grumps are in response to feeling overwhelmed by mess and clutter.

October 4

It has been another great week. I feel like both girls suddenly reached new levels with some of their abilities. I realize it is probably a long gradual process but sometimes it feels like a “kachunk” to a new place. Amy is suddenly coloring inside the lines, with her usual eye for interesting color combinations. It is startling and exciting to see a talent in Amy that doesn’t come from me at all. She is such an artist. Meanwhile, Sarah is suddenly reading beginner level books. I know last week she had read a line from one. Well, this week she has read entire books with me pointing to the words and only helping occasionally. Wow. I feel like the word cards may soon be obsolete. 

We had a team meeting this morning and it was as wonderful as ever. I love my team members so very much. Today we made books for Sarah. It was exciting to see how we each approached the task and the completely different books we produced. So far Sarah hasn’t been interested in reading them, but we all had fun making them, and we delighted in reading them ourselves. 

Some highlights from the week… 

Mom-Mom and Pop-Pop visited early in the week. Mom-Mom brilliantly had parties of varying sorts with the girls. They had laughing parties, crying parties, anticipation parties, cheering parties, snoring parties, and at Sarah’s request, a short screaming party. 

One morning when Sonia was taking Sarah into school, Sarah was wanting to tell Sonia something and wanted to look at her while she was speaking so Sarah was sometimes nearly walking backwards because she wanted to keep eye contact. This was unsolicited eye contact!! 

One day Sarah was on my lap and I said, “I love you” and she said, “so much!” Usually I say, “I love you so much” and I must say it often enough that she expected it. I love that! Overall, despite a handful of grumpy/yelling times, we are still having sweet connections and she is giving me more chin presses and smiling more often when we see each other.

On Wednesday I unexpectedly encountered a lovely therapist who used to work with Sarah when Sarah was maybe 3 1/2. At that time we were still quite anxious about Sarah’s eating and needing her to gain weight. I was tense about her eating and wanted to avoid a feeding tube. Sarah could walk but not run/jump/gallop/climb/etc. She couldn’t talk and wasn’t potty trained. No developmental milestone has ever been a given for us as we have parented Sarah. It felt so deliciously awesome to share with this therapist how far Sarah has come since that time. 

When we left school on Thursday, I lost Sarah for a couple of scary minutes. It turned out that she had zoomed into the bathroom and I hadn’t seen her detour. Then today when we passed a port-a-potty, she stopped and went in. While I want her to tell us where she is going, it seems quite wonderful that she is taking care of her potty needs in such an independent way outside of the home. 

Today we went to a birthday party at a pumpkin farm. It was wonderful. The girls loved the hay ride and the pumpkin patch. They loved running around with the other kids. They loved the food and Sarah could even eat some of it. They loved painting pumpkins. Sarah’s pumpkin decorating skill seemed to come from nowhere. I had no idea she would be so purposeful. Usually with home art projects Sarah paints her hand and then puts her hand on newspaper and maybe paints the focus item for a few moments. With her pumpkin, Sarah independently applied two googly eye stickers and painted a mouth and hair. As if it was no big thing because of course that is how you put a face on a pumpkin. OH MY GOODNESS!!! Amy’s pumpkin painting reflected her usual thorough style and is no less wonderful, it was just less of a surprise.

Note to self: always accommodate Sarah easily and quickly when she wants a clothing change after getting paint or food on her clothes unless we are at home and you can be relaxed and patient with helping her wait until a good time to change. At a party, in public, just go get the clothes! Otherwise you will get mad and speak sternly and be slightly rough with her as you hold her hand and you will regret it. (On the plus side, when she was upset after the clothing change, and had been crying for a while, I held her and apologized for yelling at her. Maybe she was at the end of her cry anyway, but it felt like she switched suddenly into a different mode and she started laughing and giving me chin presses).

September 27

Overall, I rocked the week. It was Sonia’s vacation week and I kept up with the cleaning/groceries/cooking/laundry and was a creative and kind mom too. I felt like Sarah and I had a better connection than we have had in a while, probably because I was spending more time with her. I lost my flow yesterday. But it really was a great week, taking small schedule hiccups in stride multiple times with minimal grumping on my part. I also noticed that I didn’t have much spare time for exercise or reading my book or making new word cards or anything else.

I was in the room for Sarah’s gymnastics class for when/if she needed extra help. I was so impressed with how well she paid attention to the teachers when they demonstrated the routines for each area. This is not something she has always been able to do. 

One night Sarah spilled something on her shorts at dinner. We told her it was ok to keep wearing them or she could take them off. She responded with a sing-song, “pantless.”

During one session with Sc, Sarah said that Sc’s eyes looked like tunnels and that she wanted to go in them. This seems rather poetic and profound. I don’t know if that profundity was intended, but I’ll take it. 

With G, "During our conversation, her thoughts were almost poetic in reminiscence.  At one point we hit the photo with Amy sleeping on Carl.  Sarah started, “Has glasses on.”  I didn’t get it.  “I don’t see glasses.”  “Great Grandpa.”  I still wasn’t there.  Then, “Amy as baby Daddy.”  “Oh. You’re thinking about the photo with baby Daddy with sleeping Great Grandpa.”  Her smile encompassed her entire head."

One night Sc asked Amy who her best friend was. Amy said, “Sarah. Because she’s my sister.” Amy also told me I couldn’t eat Sarah (I was pretending to be that hungry) because Sarah was her sister. 

A week ago I was giving a mini Alexander Technique lesson to N. and Sarah came over and put her hands on his leg, attempting to give an AT lesson too. 

I have been re-using some old word cards so that Sarah can strengthen the words she has learned once, since many fade a bit from her memory over time. It is exciting to see how she just needs one reminder and then she has it. Last night I was reading a beginning-reader book to Amy and realized that Sarah probably knew all the words on one of the pages. I read the set-up page with sentences very similar to the ones I was going to show to Sarah. Then I held the book in front of Sarah and pointed to the words of the next sentences. She has heard the book before (but not often) and I did read the leading sentences, but still… she read every single word of three sentences in a book correctly. WOW! I feel like maybe soon we can stop with the word cards and just help her read simple books as her reading practice. 

September 20

Sarah’s kindergarten teacher says that things are going very well for Sarah in class. Sometimes she is distracted by the air conditioner but she has been focusing well on the activities the class does. Every morning there is a question for the students to answer and when I think of it I let Sarah read it rather than reading it to her. She can usually get most of it if not all.

While I didn’t do any official in-the-room SR, I did feel like I was connecting with Sarah more in an SR sort of way when I did interact with her. This seemed to help us overall with having less yelling and more snuggles. 

There was a moment when I saw something and said “that’s neat” and Sarah responded, “that’s so cool.” I love that. 

We are continuing to encourage Sarah to phrase her questions more correctly. She often says, “we can watch something today?” or something like that. We prompt her to say, “Can we…”

During a session with L., Sarah was doing something that L wanted to discourage but didn’t want to just say no. L. decided to change the game. She gave Sarah new instructions as if it was a continuation instead of a cessation of the activity. It worked! I love this creative thinking by L. This idea of changing the game helped Sc. and I think about a new possible response to Sarah when she pretends to be a screaming baby. Sc. implemented this yesterday by asking Sarah to sing “la la la” instead and it worked! In fact, Sarah didn’t play scream for the rest of the session. Woohoo!

G. wrote about when Sarah said, "'It getted to zero.'  I’ve never heard her make that kind of a developmental error.  That is, using the regular past tense form with an irregular.  Typically, Sarah either knows a word and uses it, or she doesn’t use it.  I rarely hear these wonderful little errors.”

I had a great talk with M. and we discussed helping Sarah stay focused within an activity as one of the primary goals of the year. We talked about going for my dream situation for Sarah for next year, starting now with thinking, planning, and going for it. 

Much love to all of you.

September 13

Twenty years ago, almost exactly, I decided to sign up for French class in my freshman year of college. I thought it would improve me as a person and make my life better. I was so right! It was in that class that Carl and I met. The reason I didn’t write anything last weekend is that Carl and I were in France, celebrating twenty years of knowing each other. Just the two of us. Sonia made sure everything at home with the girls went smoothly, with the help of Grandma and Grandpa, our sitters, and our volunteers. We are immensely grateful! We had an amazing time. We stayed with family and friends and also got to see some friends who came over from Germany for a day. We walked all over Paris and Versailles. At Versailles we rented a row boat and Carl easily rowed us the length of the human-made lake. I attempted to row and after many garbled moments I did get some smooth movement. We spent some time in the beautiful countryside of France (Cercier, Annecy, Chamonix). We stayed with one of my dearest friends, whom I have known since I was 4. We ate amazingly delicious and decadent food. I bravely tried many foods that I hadn’t before or didn’t think that I liked (snails, frog legs, frois gras, raw fish pickled in vinegar, and duck with olives). Carl bravely went paragliding. We practiced speaking our limited French. Now we are enjoying a calm weekend at home and recovering from jet lag. 

It was absolutely wonderful arriving at home and having both girls climb all over me while saying, “Mom’s home!” They seem to have grown up more than just the 9 days we were away could warrant. They both seem more verbal. When I gave Sarah a writing worksheet to do and then put it away, she came to me later and said, “Where is the E worksheet?” That moment explains any socks you saw flying past you. 

Amy’s school started as did her new ballet class. She is at a different place for ballet because I wanted a class she could attend when Sarah was in kindergarten. Gymnastics started a couple weeks ago for both girls. 

I hope all of you had a wonderful couple of weeks.

August 30

Sarah started kindergarten! She loves it. She doesn’t want to leave when I pick her up in the afternoon. I love her situation so much that my heart is overflowing. To recap, the preschool assistant from last year is now the kindergarten teacher and there are 3 students total. It is half day. The other two students are lovely girls who were in Sarah’s class last year. I love seeing the other families when we do drop-off and pick-up. Everyone is so friendly and wonderful. The whole school is loving and welcoming. I really couldn’t have designed a more perfect situation. 

There are arrows along the hallway that have the words “kindergarten” or “Sarah” or the names of the other students. When Sarah walks down the hall she likes to touch the arrows and read them. Awesome!

Sarah lost yet another tooth! We have no idea where it is.

I found a cashew cream cheese that I can buy that is very similar to what I make. I put some on the green crackers Sarah likes and she said, “Sarah-friendly cream cheese on a cracker bagel.” 

Yesterday we went to an outdoor festival that had a bouncy house and a bouncy obstacle course. The girls have been loving watching American Ninja Warrior and pretending to do courses around the house (scaling window ledges). Amy was too young to do the bouncy obstacle course but Sarah did it and did an amazing job. The way it is set up there is no way for a grown-up to help except verbally so she did the whole thing fully by herself.

On the way home from the festival, Carl had something in his throat so he cleared his throat and spat. Sarah then started imitating him. It was hilarious. It could also be useful because there have been times when we can tell she just has too much mucous in her throat and if she could only clear her throat and spit then maybe she wouldn’t need to throw up.

I am taking next weekend off in terms of writing an update so my next update will be in two weeks. I hope you all have a wonderful couple of weeks.

August 23

We have just arrived home after a truly wonderful night of camping and an afternoon at a lake beach. The weather was perfect, some friends had a campsite nearby so we got to see them a few times, we arrived with plenty of time for a relaxed time of setting up and dinner despite the traffic delays that turned a 1 hour drive into 3 hours, we had a relaxed morning without needing to watch the time at all, and the girls are getting ever older and more independent. This latter fact was most notable regarding the bathrooms. Usually in public restrooms I find the largest stall and the girls and I all go in together and take turns. At the campground we each used our own stall at the same time. Whoa. The only thing they couldn’t do on their own was turn on the water because you had to press down fairly hard on the faucet control. Also, Carl at one point took Sarah to use the bathroom and so she used the women’s room entirely by herself. Carl then helped her wash her hands in the outdoor sink. This morning, Amy went back from the bathroom to our campsite all by herself while I did the breakfast dishes. When did these kids become so grown up?

At the beach today we were able to sit back in the shade some of the time that the girls played in the water. At one point Sarah got herself included in a frisbee game (in the water) with another family that we had never met before. How super amazing!!! 

Earlier in the week, Carl was getting the girls ready for bed. While he was helping Amy with something, Sarah came in to the bedroom holding her toothbrush and paste, looked at Carl and said, “Open it please.” The amazingness of this is three-fold. The fact that Sarah initiated teeth brushing instead of being told is amazing. The fact that she went to find Carl and ask for help instead of just whining and yelling in the bathroom is amazing. The fact that she looked at him while saying a clear and full request is amazing.

Sarah is now missing her two front teeth (on the top). I think she looks like a jack-o-latern. 

There are so many times that I feel frustrated by Sarah’s isms regarding tent zippers, car doors, regular doors, or other things where she then seems unreachable or inflexible, but these moments of increasing ability and independence help me appreciate that we are still moving forward zippers, doors, and all. Also, speaking of joining, I continue to relearn how valuable it is. For those who may not remember, isming is when Sarah is exclusive or semi-exclusive within a repetitive action (or repetitive in a story with little variation or flexibility). To join an ism means that I do the same thing she is doing without needing her to change in any way, just being with her in such a way as to show her I like the action too or the story too. The times recently when I have remembered to do this or observed volunteers doing this, it has been astonishing how effective it still is as a means of connecting with Sarah and after we have that connection, she is more open to whatever I say or do. Outside of the SR room it isn’t always feasible to join or I often don’t want to because I feel I don’t have the time or it is an action we don’t want her doing in any case. It feels so much better internally when I can and do join and we move forward from there.

On Wednesday I had a time of out-yelling the girls. This means we were all upset and growly but I was the loudest. As you know, this is not my proudest achievement. This time, though, I was able to let myself notice and acknowledge that part of my yelling may actually happen because it feels good. EGAD! WHAT?! Yes, indeed. The anger doesn’t feel good, but the outlet of yelling feels good and powerful. I still would like to find alternatives that work, but noticing the good feeling actually helped me move past the moment much more quickly and I also wonder if Sarah feels some of that good power and release when she yells. Berating myself a ton hasn’t really worked to change things so I’m hoping that this new angle will help me have new approaches and thoughts. It at least doesn’t pull my energy down for a day as berating sometimes does. 

Anyway, I hope you all have had wonderful weekends.

August 16

Sarah and I had a great session early in the week. At one point she talked about eating ice cream. I pretended she was a giant ice cream cone and pretended to lick her. She said, “Ah! too much lick!” in a pretend complaining voice. It was adorable. We also had a fun time with her pretending to go in and out doors to a bank while I sang a song about it to the tune of Patsy Cline’s “Walkin’ After Midnight.” Sometimes she doesn’t want me to sing anything at all so it was great to be able to sing for many minutes.

Ballet is over. For the last class Sarah and I again spent the time outside, which is when she discovered the real bank doors that open automatically when you get close. She didn’t go through them but she did get close to them often. We also watched many buses.

I have played Hangman with the girls twice! It seems to work best if I write the whole alphabet on the white board and then cross out letters as they guess them. I also have my drawing be elaborate so they always get the phrase before I finish the drawing.

Yesterday Sarah went across the monkey bars with Carl’s help. This was the first I have seen her do it, though Carl says they have done it together before. Still, this was awesome.

Inspired by American Ninja Warrior, Sarah tried climbing up the side pole part of our indoor climbing ladder. What a strong little monkey she is.

Sarah is increasing the frequency with which she wants to do her potty stops completely independently with the door shut. 

I have been offering new foods at dinner a bit more than sometimes and both girls have been adventurous try-ers. They tried pea shoots, nectarines, avocado slices, and lettuce with salad dressing.

Sarah likes to play the piano or guitar sometimes and her experimenting is really beautiful to hear. 

Overall it has been a great week. I have been exercising daily. Usually I had just been doing Zumba twice a week. Now I am also doing a bit of a workout at home. It doesn’t take long and it is definitely helping me feel better and more energized. I have been continuing to talk to my mom daily. I have stopped having caffein. I’m not sure if this last thing makes a difference but it hasn’t seemed to affect to my energy (or sometimes lack thereof). I am also holding my grumpiness a bit more gently in terms of how long I berate myself after a case of the grumps. 

Little Miss Capable just walked into the kitchen, picked up her water bottle from the drying rack, held it up to the water spout on the fridge and started to fill it. I then helped a bit because it is an awkward bottle to fill.

I hope you are all having lovely weekends.

August 9

This weekend we had a fabulous time at Bald Eagle State Park in PA. We were with Carl’s cousin and her family, all of us enjoying swimming in a lake, playing in the sand, playing on a playground, playing on bunk beds at the B&B, and then renting a pontoon boat. The weather was perfect and the scenery was beautiful. As usual, there were many many many times when all Sarah wanted to do were all the things we didn’t want her to do and that she just kept trying repeatedly. Tonight I had a small epiphany of realizing that that is part of her autism. It doesn’t mean something is terribly wrong with me or with her. It just means she wants to do certain things over and over, especially on trips because then these favorite things (ramps, doors, air hand dryers) are present in new forms and are extra prevalent. It was a relief to realize this was actually all ok.

That has been my motto for the week, written on a post-it above my desk: It’s all ok. I also have another one on the top of my computer: Everyone is ok. 

As you know, for a long time things were feeling very challenging for me. My mom wisely recommended taking some small but concrete steps to change things. One of the changes was to make my post-its. Another change was to call my mom daily (except during travel). These changes have really helped. I think part of what helps is talking to someone who I know (without a shadow of a doubt) always loves me, always cheers for me, and is interested in my deepest feelings as well as my not-so-deep thoughts. I get to talk about any and all of it. It helps keep my attention out. It also sometimes helps me tidy a room because I don’t feel like I’m really cleaning it; I’m just picking up one thing and then one more thing. I know I have lots of amazing supportive people that I see daily, but the addition of the phone call really does seem to be helping. My mom can also tell when I am about to set too-high expectations and standards for myself and nip it in the bud before I even get going (sometimes).

I had a great talk with M. this week too. She helped me remember that along with reminding myself it is all ok, I can acknowledge and name however I am feeling at that moment, accepting any and all feelings. And she suggested doing jumping jacks when I want to shift my energy or mood a bit. She also helped me verbalize why the phone calls with my mom were important and helpful.

I have had more good cries than usual lately too and I think that has also helped. Carl has been his usual wonderful listening self. I feel like I am getting back to who I recognize as myself, in terms of my energy and motivation and sense of being.

At ballet class, when everyone was sitting in a circle, Sarah got up and walked over to the teacher and said where the teacher’s phone was. On the one hand, I could have been annoyed at Sarah for being disruptive. This time I saw how awesome it was that she has the skills to be disruptive in that way. There were times in the past when I would have given anything for Sarah to be able to crawl/sit/stand/walk/talk. How awesome that she can now walk and talk so well as to be disruptive in class! So often I have been focusing on where we aren't that I forget to see and celebrate where we are.

Also at ballet, Sarah came out to see me and I asked if she wanted to go back to the class or sit with me or go outside with me. We went outside. We had a pleasant, easy time and saw two people that we knew. Amy unfortunately missed us the whole time, but aside from that it felt like a success. 

I was also thinking that when I check my phone while at zumba, so often slightly expecting a text that Sarah is having an allergic reaction (I know on some level this doesn’t make sense but it is what I have been doing), I could instead use the moment to celebrate how long Sarah has been safe and well. She really only has had one severe reaction. So, instead of always fearing another one, I could use each moment I feel fearful to remind myself that she is ok.

One of the things that has always seemed magical to me about the Alexander Technique is that subtle changes can make a huge difference to my experience. It is the same with these tiny shifts in perspective. They can make a huge difference.

Much love to you all.

August 2

Things have been mostly the same as the previous week with some good parts and some hard parts. Some highlights are when Sarah came down one morning and handed me a hair clip to put in her hair. This is not something that has occurred before or since, but it was a wonderful moment. Also, we have some volunteers who we refer to as M with a D or M with a T because their names sound the same so we distinguish based on spelling. On Friday Sarah said she was going to play with G with a G. 

Sarah’s body and potty situation are back to normal. Yay!

I did do SR time every day Sunday-Thursday for half an hour with just Sarah and then another half hour with Amy in the room too. I was glad to have both kinds of sessions. When it is just Sarah and me then I have an easier time working towards goals such as following a short schedule or playing card or board games. Sarah loves to pretend to nap and lately she has returned to the theme of being in a dorm room at Swarthmore. For some of those moments I played along with that scenario. Other times I said that it was fine if she wanted to nap and that I would play a game while I waited for her to wake up. I would bring down a game and start setting it up. Every time I did this she quickly came over to join me and we played memory matching games or Hello Kitty Uno or we did a puzzle together. When Amy joins us in the room then I take more of a back seat and let Amy drive or join the play because you can’t get more kid-like than that. Amy has vast amounts of energy so she joins some of Sarah’s play scenarios more physically and whole heartedly than I often do. 

Ballet class did not go well. Since it had seemed to work ok to come tell Sarah she could join me in the waiting area if she didn’t want to participate in class, I moved to do that again. This time Sarah screamed and resisted mightily, but I felt committed to the action at that point so I carried her out under my arm. She kept screaming so I took her outside. I felt embarrassed and mad. In hindsight it would of course have been less disruptive to let her just walk back and forth in the class. I think that is what I will allow for the next two (and final) classes. I am not signing them up for another session. If Amy wants to continue then I will find a class she can take on a morning when Sarah has school and Amy doesn’t. I have signed the girls up for gymnastics again, at a time when Sonia can be the in-room attendant, since that worked so well last year. 

I got a few warnings that my cluster headaches might be ramping up so I am already on the medication to hopefully skip the cluster. What a difference a year makes. Last year I was rarin’ to go without medication. This year, with even a mild flicker of a cluster headache I felt like I just couldn’t even manage. I just felt worn out before it even got going. 

I have been feeling mightily worn out as a parent, with barely a shred of Son-Riseyness in me. Last night it talking with my mom and crying about it all, I was able to realize again how hard I have been on myself without quite noticing it. I could see that it isn’t what I choose to do with my time (eg. reading a fun book or being super industrious and cooking and cleaning all the time, etc), it is how I am judging my choices and actions. It isn’t about finding the miracle formula for a balance of work and play. It is about holding all of my choices with compassion and support. I feel like a newborn animal on wobbly legs in terms of really using this acceptance muscle for my choices today, whatever they are. So often I think I can figure everything out on my own, but it was a wonderful reminder to have my mom helping me navigate and come back to more kindness towards myself. Any positive vibes you can send my way are much appreciated.

May you all have someone who helps you remember how to be kind to yourself.

July 26

Last Sunday we went to Idlewild for the first time. If you have never been and if you live anywhere near Pittsburgh, I highly recommend going. It is the most wonderful and pleasant amusement park! There are so many trees that even on a very hot day it is still pleasant. They have tons of rides just for little kids, including one with small cars on a track that the girls could “drive.” You can ride on Mr. Roger’s trolley into the land of make believe! We went with some friends and their daughter and overall it was one of the best days I have had in a long time. The whole day was just amazing. So… when Sarah asked to go back on Tuesday I decided to get season passes and we went again, even though our timing was limited. It was not quite the same perfect day. It was still good, but quite different. Sarah didn’t want to go on any rides beyond the carousel, which we had done twice at the beginning. Amy attempted two rides by herself that she had done with Sarah and their shared friend on Sunday. This time Amy was by herself on the motorcycle ride and looked so sad I could barely stand it. Then Amy and I waited in line for her to ride in a car. She wanted to go with another child, but the girl in line behind us wanted to go by herself and no other kids were solo. When it was Amy’s turn she started to cry before getting in the car. The girl behind her changed her mind and said she would go too. By this time it was too late for Amy and she started sobbing so we left. Then we left the park. Amy fell asleep before we exited the parking lot. I still love Idlewild and we will certainly go again, but Tuesday was a reminder that it may not always be the most perfect experience ever.

We wanted to go back to Idlewild yesterday but Sarah’s potty needs prevented such plans. I don’t know if she had a bug or if it was just the hiccup in regularity that we occasionally experience. We used to experience such troubles frequently, so it is good to notice that we hardly ever have problems these days, but yesterday was still quite challenging. I feel like most of my past couple days of interactions with Sarah involved me helping her get clean while she screamed about it. In the middle of last night it happened again. Carl was as kind and calm as he usually is in such situations. I was as mad and unkind as I usually am in such situations. I was chagrinned and humbled. Why is it so hard for me to be patient and kind sometimes? I felt like a monster as I lay in bed afterwards wondering what my good points are. In attempting to understand my behavior, I realized that in that moment I had been rough as I moved Sarah towards the towel because I was feeling hate. Queue stunned silence. How can I feel that toward my own child? Where did the overpowering love go? As rotten as the thought was, I could actually breathe more easily after I verbalized it. Then Sarah came toward our room and Carl met her in the hall. She said she wanted to sleep with mom. I felt startled that she would still want anything to do with me and that helped some tears flow. Writing this all now I see that of course I don’t really hate her and didn’t really last night either, but I certainly was hating the experience of Sarah’s yelling. Once again, allowing myself to notice the feeling that I so didn’t want to notice helps me let go and move on.

I was feeling very much like a Son-Rise failure, having run a good program for over 3 1/2 years, I now feel like I am stuck in the mud. Either I need to retire and let other people do almost all daily interactions with Sarah or I need to get back in the SR room for 30 min a day. Lately I haven’t wanted to go in the room, or Amy always wants to be there too and that is ok but different or we are going on field trips or to the pool or just hanging out around the house. Just a few days ago I felt like things were going well and easily. Maybe it is the potty issue that derailed that good feeling. I theoretically know it is just a temporary fluke, but I felt like a failure regarding feeding Sarah right. Instead of saying affirmations, I was back to feeling awful and when I did say affirmations I felt like they were a joke because clearly the evidence was against my doing a good job. Well, onward and upward. Today I will endeavor to name for myself how I am feeling, to let it be, and to get in the SR room for 30 minutes. I feel rather sick thinking about doing so. I don’t want to force it, but I think I will feel better and maybe our relationship can improve if we have that time together. I also feel quite naked writing all of this, as if all of my volunteers will be aghast. I know many of you lovely readers don’t enjoy reading about when I am hard on myself. I know. But it is how it is right now and I so much want to be honest about this whole process, this whole journey. It’s not a Son-Rise journey. It is simply my journey through being me and having my Sarah with special needs. There are very many good moments even in a week that ends feeling hard. There are so many blessings that have come from Sarah being herself as she is. I know that. And still. Sometimes I just wish some parts of this could feel easier. When I was in high school I was very attached to the Terry Brooks’ Shannara series. While they do borrow too heavily from Tolkien, one part that I always valued was that for certain magic to work, the individual had to look at and accept all of their deepest selves, unfavorable moments and all. They always did it. They always survived. So, I’m hoping that somehow through writing and sharing, I can access my own magic a bit more cleanly, clearly, and powerfully. And hopefully Sarah and I can strengthen our loving interactions and let go of the times we clash.

On the amazing side of things, Sarah’s progress with reading continues. Most word cards have 4 words on them and she can often read at least part of the newest cards the first time she sees them, making educated guesses about the words she doesn’t know. This morning she guessed “street” when the word was “stairs.” I love seeing her eyes move across the words. We have also changed the math cards to having the first part of a simple equation on the front of the card and the answer is on the back. We don’t turn the card over until she says an answer. If she doesn’t quite get it then we set up our fingers for her to count. 

Also on the plus side, ballet on Tuesday was probably the best ballet class yet. Sarah was the most focused she has been. She still didn’t want to do everything. She still left the room early to watch traffic. Amy still came out for a cuddle visit with me. But, still, it felt like progress. There was no screaming when we left. And when I ran into some friends right after class, the girls stayed with me quietly, easily, and patiently while I talked with my friends. 

On Wednesday we had a small birthday party for one of our volunteers and that felt lovely and fun - and the cake was delicious. I put a layer of home made raspberry jam in between the cake layers with the chocolate frosting. Oh my goodness! We polished the whole thing off within a matter of days. Yesterday I tried varying the recipe again, this time to include carrots and beets with the customary zucchini. I ran out of raspberry jam because I used that in place of some of the honey in the cake, so the frosting is chocolate mousse (made with avocados). I’ve used that mousse as frosting before and it has been a better combination with the normal cake with just zucchini. This cake is good but not as amazing as usual. At least it gives us all three kinds of veggies. 

I have been marveling at how awesome it is that Sarah often gets distracted from word cards or other tasks because she is noticing whatever Amy is doing and wanting to do it too. Recently she even did a little coloring with an attempt at embodying Amy’s focus, speed, determination, and thoroughness. 

Anyway, thank you as always for bearing witness and bearing with me. I wish you all love, gentleness, and a bit of magic even when the going gets tough.