March 25

We had our biggest week yet! 12 hours!!!!!!!!!! I know I say this a lot, but I am feeling ever so grateful for my lovely volunteers both in the playroom and with Amy. I am also deeply grateful for the wonderful team of school teachers and therapists and for the out-of-school therapists. We have such a good team for Ms. Independent (as one helper at school recently dubbed Sarah). Sarah definitely knows her mind and how she wants things to be. While this can be frustrating I know it will stand her in good stead.

Sarah routinely tries to repeat things she hears us say (tonight it was "new pillowcase," sounded out quietly with not all the components but enough so I knew what she was saying.) Her words are also getting more blended. "together" isn't quite a full word but it has a nice flow to it. Lately she's been talking about how we will ride or fly on a plane together to see Grandma and Grandpa. This sounds sort of like "wad on p-ain to-ge-ahr. G-ma, G-gpa." This was after her time with Carl and when we were at dinner and she was trying to say it she kept looking at Carl for cues and reminders about this new story of hers. It was so adorable and clearly focused. She also talks about "Ma-ma, Pa-pa back h-m" which means that Mom-Mom and Pop-Pop went back home. When Mom-Mom called the other day and I put the phone to Sarah's ear, Sarah listened very intently and smiled at the memory of how Mom-Mom said "Mac and (pause) CHEESE!" and then when Mom-Mom said if she were here she would give Sarah kisses, Sarah turned toward the phone and gave two kisses!

D. blowing her nose on various colors of tissue is losing some prominence as a story, though still surfaces occasionally. Now Sarah mentions giving D. a hug. The main story is of Dr. K. looking in her ears or Dr. M. looking in her ears or that there are wires in the wall (Wa-ahr! wa-ll). The word wire is said very loudly. In terms of colors now Sarah likes to say the wrong color for almost anything, usually saying that something is pink or yellow (p-k, ya-oh) and then when we ask if that is true she says no. She also likes to talk about climbing the stairs with amy or that we "wa-d ba-oo c-ah to-ge-ahr" (ride in the blue car together). This is amazing that she so frequently puts 4 words together.

Wednesday night bedtime was difficult (I think I allowed her nap to be too long) and I found myself sitting with her wishing she would just shut up. What a lovely thing! That our daughter who didn't start speaking until so long after her peers is now talking a blue streak sometimes and I am wanting her to not talk so much! Delightful (though it really wasn't when I just wanted her to go the *&#(% to sleep). But I know in the big picture this is such good progress and I love that she likes practicing her words and wants us to respond.

Sometimes Sarah asks to play with the ipad and before we even answer she says no. This week she gave us the Ode to No, saying no in many different ways, including one where it seemed that she was spelling it (nn-oh!!!!!!!!!). We were cracking up and she was having a grand time.

I think Sarah really understands how many 1, 2, and 3 are. I'm not sure beyond that. I haven't worked too much with numbers, just holding up my fingers or me counting things. I think she probably does more at school. This week I held up one of her toy cakes that has 1 hole for a candle and I asked how many holes there were. She promptly said "wu-n" and did the same for the next cake with "t-oo" and then I think she was trying to say three for the next one but it might have been trying to say 4. she is still working on the "th" sound. Speaking of which, I am beginning to think that for the past week or so at least she may be saying "the" about light reflecting on the water but that it sounds more like "duh" and so I was thinking she was trying to say something else and I just wasn't getting it. (this could still be the case). She does try to say the word reflecting (f-k-t-ng).

Sarah had another Reiki session this week and I intend to have this be a regular part of her week. The initial magic around bath time hasn't lasted but if I talk about shampoo and conditioner that interests her enough that she doesn't resist hair-washing as much. In any case, it was good to feel like we had some energy balancing work after the pneumonia.

When she was sick she lost about 2 pounds! Those were hard-won!! So we are offering the highest calorie things again. In some ways we always do this but when things are going well we start to include a more varied diet. I still am offering apples and turkey but I'm pushing the super milk and super juice (our names for things like kid essentials 1.5 and resource breeze, very high calorie fortified drinks) and letting her eat butter straight if she wants it. I weighed her tonight and it seems that we have regained some ounces. Whew! We still have some catch-up but her system seems back to normal a bit more and I've given her cyproheptadine a couple of times because of allergies (and the appetite stimulant side effect doesn't hurt).

Last night at dinner Sarah was eating mac and cheese and she started putting some noodles on Amy's high chair tray. Up until that time Amy had been rejecting most of our offers. When Sarah shared her food, Amy was quite happy to partake! Another time when Amy was in her high chair and was crying Sarah said, "Mm-ay-ee m-k" and I realized she was saying that Amy wanted milk.

With her volunteers Sarah did good turn-taking with toy candles and good ball rolling. Also, her favorite thing to do when we get home from school is to kick a ball up and down the sidewalk (as I shadow her and offer sips of high calorie beverages). In school she received a party favor blow thingie where you blow into it and the paper unrolls and makes a sound. She finds this absolutely hilarious and laughs so hard she can barely blow and sometimes makes the sound with her own voice instead of blowing hard enough to make the sound via the plastic tube.

May you all find something uproariously funny.

March 19

Amazingly enough we got 6hrs and 15min this past week. This was a week that included all of us being sick in various ways at various times, culminating in Sarah being hospitalized on Thursday with pneumonia. Luckily Carl was able to meet us at the ER (at the exact moment we pulled into the parking lot!) and took Fri off from work (sarah came home Fri early evening). Amy wasn't allowed to spend the night at the hospital so I was home with her and Carl stayed with Sarah the whole time. My babysitter came twice to be with Amy while I visited Sarah and Carl. Now Sarah is doing much much better. We also had the added bonus of J. and R. (mom-mom and pop-pop) visiting and they each did Sarah-Rise time. They also really noticed a difference in how present and communicative she was compared to when they saw her in December.

In terms of our goal of Sarah being understood widely and not just by a few of us, I think we are making progress in that direction. Many times in the hospital she said things and the doctor or nurse responded in a way that indicated they had understood her. I'm sure it is common for kids to say they are done or all done, but still it is nice that they understood her.

We now have many more people to discuss when it comes to looking in ears. Dr. M. is the most common refrain now to come after Dr. K. Sarah also tried to say "hospital" and "temperature" or "thermometer."

This weekend we watched the movie Temple Grandin. If you haven't seen it then I highly recommend it. One thing Temple is skilled at is seeing things from the point of view of an animal. I am now having the intention of understanding more of Sarah's world from her perspective.

March 11

This week we got a record 11hrs and 10 min!!! I have now increased my goal to being 11 hours and to gradually build up to 15 and then over the summer hit 20-30. With kindergarten on the horizon I really want Sarah to be as ready and as flourishing as she can be. I am scheduled to do the next bit of Son-Rise parent training in Oct (with my mom coming to The Option Institute and Son-Rise center/Autism Treatment Center of America with me to watch Amy and Sonia coming to Pittsburgh to be with Sarah).

I had a consultation with W. last week (again excellent and helpful) and am scheduled for a consultation with another facilitator (M.) this Fri. I'm feeling the internal motivation to ramp up our program and find more volunteers. I am also working on scheduling a time for M. to do an outreach and come to our house and work with Sarah and observe me working and give us suggestions for how to help Sarah the most.

This week Sarah has started pluralizing more of her words (when it is the correct thing to do) and has started to sometimes add "s" to "d" so it is "D-s buh-luh-oh n-oh-z tishu p-k" (D. blows her nose with a tissue, pink). She also says more things that I don't always understand but that sound more like full words. She's been changing the way she says button (usually "buh-t-n") to be more the way we actually say it with the t almost not there ("bu-(t)un").

L. noticed that for the first hour they played together Sarah was really connected, as if totally understanding that L. was there to play with her and wanting to connect. Since Amy wasn't having it for me to go away and do my time with Sarah that day, L. did 2hrs 15 min (a volunteer record) and by the end of that Sarah was not as into being there and not as connected. So as we build up the weekly time I think it is important to do it gradually, for all involved.

Sarah and I worked with assembling a train track a few times this weekend. Sometimes she clearly gets it so easily and understands how to manipulate the pieces and sometimes it is clearly confusing and she has the bump-out piece on top of the hole where it needs to go but the track is lying on top of the piece that it needs to be next to.

Eating hasn't been the greatest this week but Sarah was sick on Fri so who knows how much belly discomfort she has and isn't communicating verbally. and now Carl is sick. I hope all of you are well.

Music class again went pretty well with Sarah alert and focused for 1/4 to 1/3 of the time. I'm not sure if it gets to be overwhelming sometimes and then she disconnects. Maybe. But when she connects she is having a good time and taking it all in.

What I do know for sure is that a great feature of the Son-Rise program is that it gives me a framework for spending more quality time with Sarah and that makes such a huge difference. It keeps me staying with her and trying things when in the past I would have given up in frustration or moved away to deal with dishes or mail or laundry, etc.

March 4

This week we got 10 hours of official Sarah-Rise time. While it influences interactions throughout our day, Carl and I are both aware of a different kind of focus and attentiveness that we have when we are doing official time, whether or not it is in the SR room or elsewhere, with Amy or without.

We had a great volunteer team meeting, talking about the three E's (Energy, Excitement, and Enthusiam).

Music class on Saturday again went smoothly. Sarah participated more than ever with one of the songs that includes clapping and waving hands and shaking your body. She laughed gleefully in response to a song with a cat meowing. There was some slightly manic ismy laughter where she is slightly in her own world (or seeing people I don't see!). At the beginning of class the teacher was playing a trumpet and Sarah was totally enthralled and wanted to push the buttons and watch very closely.

At music class and elsewhere I am noticing that Amy is the one who is more of a handful at times (because so many things look tasty and interesting!) I am also noticing that going to stores with Sarah is easier than it used to be (or maybe this is just my relaxing more about things). When we went to buy flip flops for her on Friday we went to Old Navy and after finding her flip flops she really really really wanted to wear them NOW!!!! but I said we had to buy them first. She was very upset. Then I had the gall to say I wanted to try some clothes on before we left. Her storm of upset passed and she sat patiently and happily on the bench in the changing room while I tried on some items (none of which worked).

Today she eagerly helped Carl with a project in the basement. If the shelf wasn't being installed right above a sink she might have held focus for longer than helping screw in one screw, but how can one ignore a beloved sink?

I think Sarah is starting to get in the groove of having people come play with her in the playroom. She is attempting the names of her volunteers and on Wed she lit up when she saw Sh. and hopped out of bed and went into the playroom with her.

I am feeling so supported by my village, so to speak. A few of the parents I did the summer training with have said they haven't found any volunteers yet. I feel so deeply blessed to have wonderful volunteers for the playroom and for Amy.

This week Sarah had two reiki sessions. Reiki is energy work so can't hurt and has the potential to help. For most of the time I am interacting with Sarah while my friend K. does the reiki.

Sarah tends to talk more to me or Carl than to other people (I'm not sure about at school). This may be because so much of what she says is stuff most people won't understand and she knows that we will usually understand. I love our interactions when she starts naming colors and I ask if the tissue (that D. used to blow her nose "D b-l-ow n-o-ze") was in fact pink and she says "no" with a gleam in her eye. We go through all the colors sometimes multiple times and it is clearly play and she is present and making eye contact the whole time. When she says other things like "play wire" and I ask if we are going to play with wires then she also says no. It's a nice way to play with things she says, to ask the question back to her regarding the factuality of what she just said. I can also ask why we aren't going to play with wires (or ride amy) and she says "hurt" (well, "h-t).

The thing that makes me want to laugh with delight is that Sarah now says so many new things so frequently that it almost feels silly to tell Carl the new word she said. Because of course she said something new! She does that every day! How deliciously lovely that we are at this point. This point that had seemed so impossible, as all of her achievements have at one time seemed. Now to remember that whatever is still feeling impossible will also come about.