June 26

Last week we got a whopping 17 hours!!! That is the most we have ever gotten.

This past weekend my dad and stepmom were here and they noticed a big difference from when they saw Sarah in February. Both they and Carl’s mother noticed a marked increase in eye contact. It is as if sometimes Sarah is in a fog of distraction or excitement where she is very clearly not a typical kid and sometimes that fog lifts and she is so present that one might not realize at first that she wasn’t typical. As I write that I realize that sometimes I forget what a typical kid her age is like and maybe to other people it would always be obvious that she is unique. I don’t know.

We are making such wonderful progress with her language and eye contact and listening skills. When I am just at home and not comparing us to other families then I can be feeling so great about everything. And then we spend time with typical kids. Sometimes this goes well and I don’t compare and I still feel good. Sometimes I notice the glaring disparity between Sarah and typical kids and I feel the mountain of how far we have to go looming and I plunge into a depressed fog. Luckily that fog usually lifts relatively quickly. I realize the key perhaps is not to compare but I’m not quite there yet. I know we can’t remove ourselves from the world and I also think that for now it makes sense to spend most of our time in fairly controlled settings with a small number of people and especially in the Sarah-Rise room. I notice Sarah’s calm presence after she has spent time in there with Carl or our volunteers.

When I am handing things well (things being life in all ways with kids, with a kid with special needs, laundry, food, work, running Sarah-Rise, etc) then it feels good and easy. Not that it isn’t work but I feel up to it and glad to be doing it. When I hit my limit then suddenly everything is too hard and I can’t do this at all.

There is a song by Jason Mraz called “I won’t give up.” I have been playing this repetitively (as if it’s an ism!) It helps me feel hopeful and determined and calm. Perhaps that is what Sarah’s isms (exclusive behaviors) do for her.  A week ago we had a Sarah-Rise team meeting with most of our volunteers and I started by playing that song. It is my love song to Sarah. It is our collective love song to her. The lyrics are as follows.

When I look into your eyes
It’s like watching the night sky
Or a beautiful sunrise
There’s so much they hold
And just like them old stars
I see that you’ve come so far
To be right where you are
How old is your soul?

I won’t give up on us
Even if the skies get rough
I’m giving you all my love
I’m still looking up

And when you’re needing your space
To do some navigating
I’ll be here patiently waiting
To see what you find

‘Cause even the stars they burn
Some even fall to the earth
We’ve got a lot to learn
God knows we’re worth it
No, I won’t give up

I don’t wanna be someone who walks away so easily
I’m here to stay and make the difference that I can make
Our differences they do a lot to teach us how to use
The tools and gifts we got yeah, we got a lot at stake
And in the end, you’re still my friend at least we did intend
For us to work we didn’t break, we didn’t burn
We had to learn how to bend without the world caving in
I had to learn what I’ve got, and what I’m not
And who I am

I won’t give up on us
Even if the skies get rough
I’m giving you all my love
I’m still looking up
Still looking up.

I won’t give up on us (no I’m not giving up)
God knows I’m tough enough (I am tough, I am loved)
We’ve got a lot to learn (we’re alive, we are loved)
God knows we’re worth it (and we’re worth it)

I won’t give up on us
Even if the skies get rough
I’m giving you all my love
I’m still looking up

Overall we had a great team meeting discussing Sarah’s exclusive behaviors and how to join them and how to notice the green lights for when we can build on the activity to expand her thinking and attention span. We also welcomed two new volunteers.
I am increasing the healthy eating habits of our whole family. I am always inspired to do more real cooking by our reunion vacation with our college friends. I have also been reading The Autism Revolution and it has a lot of information about food stuff as it pertains to autism. I am making more things myself and aiming to do less and less prepackaged and premade things. Both Carl and I noticed we are feeling healthier. I’m not sure if this is transferring to Sarah yet because I still can’t force her to eat certain things. Amy loves my lasagne and quiche and granola. The closest Sarah came to any of those items was to pick up a bite of quiche and throw it across the table. Having Amy like the food I make is amazingly wonderful. I used to marvel at how many parents made food for their kids. I tried many times when Sarah was younger and then stopped bothering because why make food when it won’t be eaten? Sarah’s repertoire is definitely expanding and she likes some things that I make but not yet like Amy. I have been making yogurt shakes to increase Sarah’s fruit intake. It helps some but with yogurt shakes or green juice, there are days when she drinks them and days when she doesn’t. I used to use car travel as a way to increase Sarah’s calorie intake (donuts, fries). Now I am going to use the car to increase fruit and veggies. It is one of the few places that she is a captive eater and she doesn’t have much else to do so it works well. I also introduced freeze-dried peas to the Sarah-Rise room. When she would eat yogurt I would eat peas and sing about them. After 2 days of this she started eating a few peas! I checked her weight and we are still doing well. No loss. Yay!

Sarah’s language continues to expand and improve. We still have a long way to go for full clarity but that is slowly improving. When Sarah wants me to come in to wherever she is she says very clearly “come in.” Normally she says that something cold is “c-d-o.” Last week when reading Mo Willems’ Pigs Make Me Sneeze I paused at the end when Gerald says “Piggie Piggie great news! I have a cold!” I said all but the last word and Sarah filled in a perfect “cold.” She often gets more of the music of language when I leave out words in books she knows well, words she maybe has never said and she just gives it her best garbled shot that only has a few correct bits but the attempt is more of a fluid word overall. When G. was here last week (we have shifted this to be one hour once a week instead of 30 min twice a week) Sarah wanted the ball that Amy was holding and she said “pass.” We hadn’t been using that word at all just then!

Sarah’s listening is also improving, at least some of the time. If she is upset and I ask her to listen she often will quiet herself while I speak. This change happened one night after I lost my temper briefly but then came in with my arm around her to explain why I got upset: because it felt like my words didn’t matter and that it meant a lot to me when she would listen. The next day pre-nap she did her usual knee-jerk “la la la” when I requested something. I asked if she would listen while I explained myself. She sat on the step and I sat a foot away and explained my thinking. She listened and when I asked if she wanted to change her mind she said no. And that was totally fine because I felt heard. Not that this has fixed every situation but it is an improvement.

Still looking up.