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).