November 16

We have had many amazing moments this week.

The last night that Mom-Mom and Pop-Pop were visiting, they played with the girls and Carl with toy cars that can zoom forward if you first drive them backward. I was at Zumba, but apparently Sarah’s involvement was focused and relational, so that everyone was really playing a racing game together, rather than Sarah being focused on the cars to the exclusion of everyone else. These cars are a new favorite, especially because the doors open and close, and often Sarah does ism fairly exclusively with them.

During Carl’s SR session, he and Sarah built tunnels for the cars to drive through and Sarah followed his instructions and copied the initial design that he built. During my session I attempted to add in drawing a road with stoplights to color. Sarah did participate but it felt like a bit more work on my part to encourage the participation. She wanted to move on to playing with pictures of flags, which turned into a small history lesson about the numbers of stars and stripes in the past and on our current flag. I’m not sure how much she retained, but I felt like she was listening and I felt pleased that we could work in history connected with one of her great loves.

I realized that while I may not be the best at following someone else’s curriculum or coming up with my own, I am really good at thinking on my feet to weave in all sorts of academic skill practice based on whatever Sarah wants to do.

I refreshed some of the toys in the Sarah-Rise room and during L.’s session she brought down the math flash cards from Handwriting Without Tears, which Sarah hadn’t played with for months. L. said that Sarah eagerly and diligently started going through the cards, tracing the numbers with her finger and then counting the objects on the opposite side. Sarah went through the whole deck and would have done more if we had them.

Sonia had the idea to give Sarah measurable tasks now and then again at the end of the school year. I gave Sarah a choice during one of my sessions about which kind of activity she wanted to do. She chose cutting. I drew a few straight lines across a page and asked her to cut following the lines. She cut a straight line that wasn’t on a drawn line and then did some attempts to follow the lines. This by itself seemed amazing to me. Then she wanted to keep cutting so I took a new piece of paper and drew three straight lines across it and asked again if she could cut following the lines. This time she did it perfectly all by herself!!!!! I had no idea she had this level of skill. Doing anything beyond a straight line, such as a zigzag or curve, is now the challenge.

Sarah had a session with one of our new volunteers, J., and she was saying “the curtains are closed.” He wasn’t understanding the word “curtains” so after a few attempts Sarah said, “the shutters are closed.” I didn’t even know she knew that word! I often think that what we are aiming for is to smart-up our time with her, rather than ever dumbing-down. The more varied our vocabulary the better. I love that Sarah had the calm, thoughtful, flexibility and the determination to be understood that allowed her to think of saying shutters.

We have been working with Sarah to say “yes” instead of “yeah” because sometimes her “yeah” can almost sound like “no.” When she says “yes” clearly we often celebrate. Amy, who is just starting to be able to pronounce “s” but only if you don’t draw any attention to this fact, has started saying, “Hara, you did a really good job haying ‘es.'” Amy now gets the “s” sound in maybe 1/2 of her words. I am so curious about what will happen to how she says Sarah’s name. I love how Amy currently says, “Hara,” as if calling Sarah the energy center of a person’s body.

Yesterday I received a large empty basket that I thought would be perfect for the girls to store toys in and help keep the family room clean. Amy had another vision. She rapidly filled it with all sorts of things (socks, undies, stuffed animals, steppin’ stones, toy cups, a plethora of small toys, pajamas, and dress-up clothing). She told me she was packing for a trip and that then she and Hello Kitty were going to sit in the egg chair and pretend to drive somewhere.

Last night when Carl was helping the girls get ready for bed, he picked up Sarah, counted to three, and tossed her on the bed. Sarah immediately returned to him, backing into him, and saying, “one, one two three again.” After giving the girls several turns each, Carl said he was done. The girls then picked up stuffed animals and started counting and tossing the animals on the bed.

Yesterday morning I got out supplies for the girls to do an art project with craypas and watercolors. Amy, who loves to color, immediately got down to business. Sarah did a few cursory scribbles but mainly wanted to hold a handful of craypas and then slide new craypas into the bundle in her hand. While I usually allow this, I also usually feel disappointed that she isn’t doing the activity I envisioned. Yesterday I was able to truly let go of judgement and I felt peaceful acceptance about what Sarah wanted to do. Both girls then added water color to their work and then we moved on with our day. Two hours later, Sarah independently returned to the art table and asked me for new paper. She proceeded to color with intention and focus. Wow.

I spoke to Sarah’s naturopath about the most recent test to see how her body is doing. We still have a long way to go, but progress has been made! The doctor said if we consider that when we started we had 100% of the way to go, now we have about 80% of the way to go. Speaking of our food journey, a reader asked me if I would write about the dietary changes we have made for Sarah and what results we have seen. Here is our journey in a nutshell…

Diagnosed before age 1 as Failure to Thrive, Sarah was also diagnosed with mild acid reflux. She was put on medications for acid reflux and constipation, and she was given an appetite stimulant. We fed Sarah the highest calorie foods I could find, with no regard to health because my main concern was getting calories and avoiding a feeding tube and I did the best I knew to do at the time. For years her food involved adding powdered oil and other calorie supplements to her food in addition to giving her fortified drinks. I plied her with fast food fries and donuts and she ate butter pats straight. We always had at least 10 pints of ice cream in the house, but only the highest calorie varieties. I used to sing in trade for bites. I used to walk her in a stroller or drive for an hour at at time just because she ate better in those situations.

When we started Son-Rise, I spoke to other parents about GAPS I decided to try it after about a year of our SR program. Son-Rise helped me have the courage and framework to change the eating of the whole family radically. Having Sonia by my side for it was enormously helpful. It is a ton of kitchen work. I am in awe of parents who do this who don’t have as much help as I do.

I phased out junk food and didn’t re-buy when we ran out of favored items. I put the whole family on full GAPS. Then I took Sarah down to the intro level and initially progressed under the guidance of a GAPS practitioner.  It was 2 steps forward and 1 step back and it continues to feel that way but overall we are in a much healthier place. Sarah is off of all medications and she gains weight slowly but steadily and healthily. I no longer worry about her calorie intake or weight gain. Her bowel movements are mostly regular but I still have to make sure she gets the right balance of foods and enough water. and time to sit on the toilet while we read to her. She eats a mostly full GAPS diet but with these variations: she eats rice or rice pasta maybe once a month, she eats sweet potato and white potatoes a couple times a month, she eats chocolate (as long as I make it myself with raw cocao powder), and she has soy yogurt a couple times a week, she eats no dairy and no eggs.

We are working with a naturopath and did testing on various bodily outputs. The results showed that Sarah was not absorbing nutrients from her food well nor was she detoxing well. She has a leaky gut and is missing some gut flora. We learned that she is allergic to eggs and dairy so she doesn’t get any of those anymore. Now I make soy yogurt (another departure from GAPS). We gave (and give) her lots of supplements (probiotics, fish oil, digestive enzymes, electrolytes, a custom vitamin, and a custom amino acid blend). There may have been skin rashes in response to some of the supplements or it could have been bad coincidental timing and due to something else yet undetermined. Certain supplements may or may not lead to some disfluency in Sarah’s speech. There are too many factors and not enough clear data, but it is one of my hypotheses. It seems best for Sarah not to do chewable enzymes but just to swallow a pill. Luckily she is amazing at swallowing pills.

We did not see huge behavioral changes as some families notice, but I am still glad to have Sarah and the whole family eating more healthily. A summary of Sarah’s current diet: grain-free with the exception of occasional rice, dairy-free, egg-free, refined-sugar-free. I make almost all of her food myself from scratch. I track her food daily as I have been for almost two years.

My most recent Alexander Technique reading of Indirect Procedures by Pedro de Alcantara had the following line, “The Technique is not about keeping your balance, but about losing it and not being disturbed by this loss. To work on yourself is to work willingly and gladly for ways of losing your balance and dealing with it.” I love the perspective of gladness. So often with the food journey I get frustrated by what I see as set backs. Maybe I could be glad for the questions and the information that we do gain. Maybe I could also approach my emotional struggles with gladness rather than thinking I should maintain more balance than I do. Every loss of equilibrium in whatever realm, if followed by more understanding as that equilibrium is rediscovered, is a gain. And all of this certainly keeps life interesting. (Remind me later that I have said this!)