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.

June 18

15 hours! And I fully expect us to have big weeks from here on for most of the summer. We have some new volunteers, some regular and some to fill in when they can. I am also now going to take Amy to daycare some mornings and get an extra couple of hours with Sarah. On our best weeks this will be an additional 6 hours that I get with her.

School is done for the summer. This is sad because we will miss the great people and it is exciting that now we can get even more SR time.

I have recently reintroduced gluten items into Sarah's diet. Just a few. So far no notable changes but I didn't feel that removing it really did anything of note either. It will certainly be easier if we can include it.  My new food goal is to make more real food for all of us more of the time. This will take more time but I think it is important. For that reason though I'm not planning on changing anything else major at the moment. One food project at a time. I am still limiting sugar in the second half of the day but I'm not ready to do anything else drastic like cutting dairy. Just more real food more often.

Sarah had a vision evaluation this past week and the great news is that Sarah's eyes seem to be in good shape. All of the traditional eye doctors had also said this over the years but this person was looking at a slightly broader picture, I think. Or at any rate, I liked her and the experience better.

In the playroom Sarah has rediscovered her love of ribbons. We have brightly colored ribbons that can be worn on the wrist, though that is not what Sarah likes to do with them. She likes to put them around her neck so they hang down and she can see them. This seems to be an exclusive activity except she readily accepted my help to put them on. Then I would ask if she wanted them on her elbow or nose or some other place. She would say no and then I would help her say "on my neck." She is clearly so pleased with herself when she can say something and when I celebrate her hugely for it.  When she first wanted to play with the ribbons I think she doubted her ability to say the word "ribbon." She asked to be picked up so she could get the box from the shelf. I picked her up but stayed back in the middle of the room and kept telling her I knew she could tell me with words. And she did! It was rough but I got it and she was so pleased.

I think her eye contact is improving. It is hard for me to tell objectively since I am with her so much but I feel like there are times when I come in the room after a volunteer or Carl has been with her and her look at me when I come in is so present and connected it is like a jolt of energy. It is that way a lot around the house or when I am in the room with her, but, as I have mentioned, if I am ever surprised by something then I figure it must be different in some way. Her grandmother N. and our Amy-watching volunteer D. have also commented on Sarah's improved eye contact. Yesterday Sarah wanted to swing on our neighbor's swing and Carl said she had to go say hi to the neighbor so they could ask. I happened to return from grocery shopping in time to see Sarah look at our neighbor from across the street, wave, and say "hi." I don't think I have ever seen such a beautiful and connected hello from her. It looked so normal.

I certainly still have many times outside the SR room where I lose my temper or am grumpy or what have you. But I am also starting to really get it that at least in the playroom that is my time to be in love with Sarah and to love everything she does and want to connect for the sake of love rather than needing her to change. And when she is open to it I want to use each precious minute to go for the gold of teaching her to play using imagination or play a game the way it is meant to be played or speak clearly. I need to go for it like Amy goes for things, not worrying if I will fall (eg Sarah might not like it) and just keep trying. The more I focus on what I can do to help Sarah the most, the faster the time goes. I write this after having an excellent 2 hours this morning. We'll see if I can maintain it for the next 2 hours today. :)

I am again feeling deeply moved by the help and support given to us in this venture to help this marvelous girl. Thank you all so very much.

June 11

This week we got 9 hours and 40 minutes of official Sarah-Rise time.

We are still gluten-free. For the past 3 days I have also given Sarah a chewable probiotic. I'm not sure if this is doing anything but I think it probably can't hurt and might help her digestive system overall. We also have tried stopping dessert intake after 3pm in an effort to help bedtimes. Yesterday since things had been going well with bedtimes and I felt like we were actually creating more intense obsession with ice-cream by denying access, I let her have some at 5pm. Bedtime was harder. Not terrible but not great. The other factor that might have contributed was that we had an earlier dinner than usual so she truly might have been hungry (that is what she said to get out of bedtime.) She only had a few bites of a bagel though. When she uses the claim of hunger to get out of going to bed we make her tell us what, specifically, she wants to eat. Two nights ago as Carl tried to get her to say what she wanted to eat she then responded "food." I love that she knows the system that saying she wants to eat can delay other things and that she was trying to milk the system. That wasn't specific enough for us, though, so to bed she went. Now I am uncertain about how to proceed. I know most parents don't give their kids whatever food they want whenever they want it and cutting gluten has worked by offering similar alternatives. The thing that I have loved about us letting her eat whatever whenever was that she didn't seem to see foods differently. An apple was just as good as ice-cream, whereas for me, the ice-cream would definitely be the treat. So I am hesitant to create the sugar-as-treat mentality that will then create more of an obsession. But maybe the obsession is already there and this is just letting me see it. I did buy frozen greek yogurt to try as an alternative since it is lower in sugar. Cutting sugar will also make it harder, at least initially, to keep the calorie intake up. I had been planning on trying to cut her sugar intake a lot overall but this experiment points out that I need to go slowly and that it will be challenging. It is more challenging still now that Sarah can quickly get out of her high chair and open the fridge, stepping on the lowest ledge to reach the ice-cream. Adorable and I love her capability, and at the same time, very frustrating. I may need to start strapping her in, which I haven't yet had to do in this particular chair.

Yesterday Carl was in  Sarah's bedroom with Sarah and Amy. Amy was trying unsuccessfully to open the door. Sarah observed the situation and then calmly got out of bed, walked over to Amy, removed Amy's hands from the knob, and opened the door. What a helpful and capable big sister! Sarah still has some knob work to figure out since she just wiggles it back and forth until the door opens; she doesn't fully understand what she is doing that makes it work.

We had  lovely visit with Carl's parents, known to Sarah and Amy as Grandma and Grandpa. Grandma did some great Sarah-Rise time and Amy-watching while Carl or I did SR time.

With language I have been encouraging Sarah to add in the missing "l" in words like blue, black, and play. If I step her through it and say what sound she needs to add she can do it. It's not her default but she can do it.

June 3

This past week we were away on vacation with friends from college. We rented a house in CA, 2 hours north of San Francisco and we had a fabulous time. The girls did well with all the travel, even if they didn't like some parts of it. They even did well yesterday with our sprint through LAX, with each of us carrying a child. Amazingly enough we made our connection and even more amazingly, so did our luggage.

Due to the change in our normal routine we only got in half an hour of official Sarah-Rise time. We still have many wonderful moments to share.

On one of the flights to get to San Francisco, Sarah told Carl that her ears hurt (a first to communicate this on a flight). Carl told her that drinking water would help. She held her sippy cup up to her ear and had a joking gleam in her eye. Then she did drink some water and it did indeed help.

For our rental car we were using National, which Carl uses for work enough to have the membership where you get to just walk down a row of cars and pick the one that looks good to you. As we were discussing what might make sense for us, Sarah went ahead and decisively climbed into a white car. On the drive to our friends' house where we stayed for our first night, Carl and I were talking to Sarah, telling her how nice it was that she picked out the car. She replied "got in." We erupted with laughter and she was clearly pleased with herself. Her response was perfectly timed, perfectly pronounced, had the correct tense, and was adding to the conversation instead of repeating anything that had been directly stated. Fantastic!

The house we were renting had a private beach and a canoe. We attempted to canoe for about 2 minutes but the girls were ready for naps and lunch and did not want to canoe. The delightful result of our 2 minute outing was that Amy experienced the wonder of the life vest. For the remaining days of the trip she would periodically indicate that she wanted to wear it and would toddle around the house looking very important in her red life jacket. So edibly adorable!

We have been getting together with this group of friends for the past six years. The first year, Sarah was still only breast-feeding so eating was not an issue. Every year since then has been stressful in terms of Sarah's eating or lack thereof. This year there was no problem! We were still gluten-free but she ate good amounts and good things.

The first few nights Sarah wanted to go to bed early or at her normal time. The last two nights she would try to go to bed but then wasn't tired and would come out to join the adults. She really wanted to join us. Both nights she climbed onto the couch next to I., who had the best shorts to discuss. She clearly enjoyed being the center of the attention and made good eye contact as she said all of her contributions. We asked her if I. should keep his old job or take a new job. She responded with whichever choice we mentioned second, until she decided that he should have Dr. M.'s old job (you might remember Dr. M. of ear-looking fame from when she had pneumonia). This sounded like "da-da m--s l-oh-d dob."

It was a lovely week and we are also glad to be home.