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.