This week we got 10 hours and 10 minutes of official time. We also had a new (returning from college) volunteer start on Saturday. YAY!!
Gluten-free eating is still going well, though not with any notable behavioral differences. Sarah’s excited hands and jaw movements have lessened but we think they lessened before we went gluten-free. It’s possible that I’m not remembering any of this accurately so we will see what happens when we add it back in. If anything, she is having a harder time with transitions and not getting her way. I think this is not related to food but may be related to some developmental progress (I can hope) or potentially the time in the Sarah-Rise room where she has almost total control. If it is the latter then I am willing to accept some more transitional difficulties temporarily in exchange for her burgeoning language.
We are now waiting for the results from blood tests to see if she has celiac disease or a gluten or casein allergy, along with checking her other levels for other things that doctors understand more than I do. She did amazingly well with getting her blood drawn. She stayed still on my lap with minimal fussing. I’m not sure if she is just more used to it or if it was my explaining ahead of time what was going to happen.
Sarah has become very interested in the picture we have on the fridge of her bouncing on the red horse-ball at our old house. This is actually our Sarah-Rise picture from when we were seeking volunteers and the picture I sent to Option when they requested a picture of my child. Sarah keeps seeing it and then asking for help to go in the old house. This sounds sort of like “Hep S-ya owd hOWse.” I am glad that she remembers the old house and touched that she wants to go there.
Sometimes her “hep” has expanded with prompting into “hel-p.” I often have to ask her a couple times to look at me when she says it when she wants something open but then she usually achieves her goal with out my hep.
She often talks about having “two pehr dnz” (two pairs of jeans) and sometimes we say that she does have two pairs but can only wear one at a time. Once this week she amended her statement after our response to be “wun pehr dnz” (one pair jeans).
I wish I could convey that wonderfulness of the way she says certain words. She often adds the word “today” after things such as “no nap today” or “play cakes today.” She says it liltingly as if she is slightly Irish or southern or something “T-daaiy.” She also has such a lovely way of saying “aya” which means yes, especially when she is relaxed about wanting something so it is “aii…yaaaa.” She has recently started actually saying her version of “yes” so I think “aya’s” days are numbered. Speaking of numbers, I believe she said a perfect “ten” today. And when referring to Amy she sometimes says her best approximation of “her” appropriately. Amazing. She also tells me to “buh a” (buy a) whatever she wants that I say we don’t have, such as a black dot shirt. So she is starting to get filler and connecting words and some pronouns. I think the distinction of “I” and “you” will be the hardest. By adding the smaller words she is easily increasing her sentence length. I don’t remember what she said today at one point but I do remember counting that she said 5 words together.
She can convey so much to us now it is astonishing. We have come so far so fast, relatively speaking. That seems odd to say given that everything with Sarah takes a long time. I think it can be hard to imagine what it is like to have to truly teach your kid each tiny bit of everything. I can have trouble remembering and I have been here for every step of everything. Amy gets things so easily and I take it for granted that of course she will get things easily. Sarah does not get things easily. We teach her EVERYTHING in tiny detail again and again and again and again. I know she certainly is the final person putting things together and that she does learn some things seemingly on her own. But I also really want to notice and celebrate that WE ARE TEACHING A PERSON TO SPEAK who did not easily know how to hear the music of language or how to produce it on her own. So we are doing an amazing thing. And Sarah is so deeply remarkable in how she perseveres to learn EVERYTHING without too much frustration over how much she has to practice. Sometimes I can feel so depressed and mad about our whole situation with Sarah and sometimes I feel incredibly blessed that we get to experience this journey.
Whatever your journey, I hope you have moments of feeling blessed.
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