July 30

This week we clocked 26 hours and 45 minutes. An all time record!! 

As I mentioned before, whenever I despair Sarah always does something to show me hope. This has been an amazing week. At her own request Sarah now cooks scrambled eggs daily, sometimes just for herself and Amy and sometimes for 4 people! She helped cook a soup that I made (though she didn't eat it). After cooking her eggs she routinely gets her own fork, carries her bowl to the table, and goes back to the spice cabinet to get the salt shaker. In the past when people would suggest having kids help with cooking or cleaning up after a meal I always thought that was a ridiculous notion. And now we are at that point! I haven't yet had her clean up but she helps clean up her toys in the Sarah-Rise room sometimes so I think meal clean-up can come next.

I have tackled the electronic form for the team to fill out and I am super excited about it. So far I am the only one to use it but I will introduce it to the team this week. It will make it easy to track our goals and what techniques work well to further those goals. It will also allow us to really track her language progress, which words are spontaneous and which are requested and how they sound in either case. What I really love is my sense of annoyance with needing to fill out all of the different words she says.... because there are so many!!! If Sarah-Rise has given us nothing else, it has given us a language explosion. And I know it has given us so much more too. The other thing the form will help with is pointing out the areas where Sarah needs help, since the form is based on the Son-Rise developmental model. I realized this week that she usually only cries when she wants to leave the room or when she wants a different person with her (usually volunteer N.). I started not getting the games down in the customary way but instead just getting out a few of the items from a box. Whew! Did that get her whining revved up! So now I see we need to stop being quite so accommodating as we bring things down. We will get her what she wants but we want to elicit a calm use of language on the way to getting what she wants.

Sarah has more clear words overall and especially when I request that she practice a word she does an excellent job trying and many times says words perfectly. A few perfect words from the week: (volunteer) N., yellow, marker. I am so proud of Sarah for how much she is willing to practice words. It helps that she finds words, or my face or voice when I say them, funny. Today she asked for markers and we practiced for a good 5 minutes before I got them. I only got one perfect rendition of the word from her but we were laughing and connected and enjoying our time of practicing this word together. 

She continues to ask that "N., come in" several times a day. We have written many letters to him. Writing letters and drawing pictures seem to really get her attention. 

The part that makes me teary about this week is that Sarah drew her first picture. At least, to my knowledge, this was the first time she conveyed that she was putting on paper a vision that she had in her head. After we wrote the letter to N. I gave her the paper and pencil and just let her draw. I didn't say anything or do anything except pay attention. She drew some arcs and scribbles. Then she made lots of dots and short hash marks. Then she said, "wain" (rain). I wanted to clarify so I asked if she was drawing rain. She said aya. Then I asked if the scribbles were clouds. She replied "sigh" (sky). 

Thanks to A. singing with the pizza game "when the moon hits your eye like a big pizza pie, that's amore" we now have a great attention getter and tool for building in anything. She loves this song and cracks up when we sing it, making delighted eye contact. If we pause she will fill in almost all of the words. I then take the song and vary it depending on what we are playing with (eg. "when the cake hits your belly like  a big piece of cake that is silly" or "when the playdough lid hits the windowsill like a big playdough lid that's amore" or "when I give you lots of tickles and you give me lots of giggles that's amore.")

When Sarah's volunteers show up she lights up and heads upstairs, starting to play even before reaching the SR room. She frequently references A.'s suspenders and the game they play with them (she pulls them, he leans over so she tips back and he makes an "aaah" sound, which she echoes when talking about the play).

When N. finished his time with Sarah on Thursday she spontaneously gave him a real hug, not a chin-press or shorts-stimming hug, but a real hug. Then a couple of hours later when G. showed up she looked up and said "ha" (hi) before he had said anything. Then she headed upstairs and told him to come up, waiting for him part of the way up and then dashing off with glee for her bedroom (where they played with quilts on the car bed).

We are fortunate to have Carl's sister Sonia visiting for a couple of weeks so that makes it easier to get in extra SR time. Without us saying anything Sarah progressed to a better pronunciation of Sonia's name. She used to say "S-oh-a" and now she says "Sona." Sonia noticed (since she last saw Sarah in April) a dramatic improvement in Sarah's eye contact, the clarity of her language, the amount of her language, and how nice she is to Amy and to others. She used to hit Amy when she was mad at me or sometimes would hit me or Sonia. Now she doesn't. In fact, Amy is now the one to push Sarah and give attack hugs, which Sarah tolerates as if it is a minor nuisance. 

The more time I spend in the Sarah-Rise room the easier it gets and the faster the time goes. I feel like I am also really starting to understand and appreciate joining. This is when she is exclusive so we then do the same thing she is doing a few feet away, either with part of the same toy or something similar. What I am realizing is that if she is exclusive and I try to draw her out with something that isn't joining it often doesn't hook her attention. But when I join then she really starts paying attention to what I am doing. Sometimes I can build and sometimes builds don't work but we stay connected and she is really watching me. That is the beauty of it. There have been studies that show that when parents join their children then those children spend more time looking at the parent in general, not just at that time. And the more Sarah looks at us all the more she will learn. It makes so much sense. If I am watching my favorite tv show and you come over and tell me I should come watch your show instead I will probably ignore you. But if you sit and watch my show and love it too then I will be more apt to trust your recommendation of what to watch next. So when I open and close a lid for half an hour I am watching Sarah's show. Then when I suggest writing a letter to Noah, she is willing to watch my show.

What did I envision when I wanted to have kids? I wanted to have a wonderful and loving connection. I wanted to be amazed and delighted by my kids. I have that and I am so grateful.

Thanks again to all of our volunteers giving their time to help this venture go forth. This is a remarkable journey.

July 22

This week was the first week where we reached my goal of 20 hours. We actually did 20 hrs and 15 min.

As usual there were many good things this week and some rough patches. Wed/Thurs I hit a very rough patch personally where I sort of crashed and burned. I felt hopeless and incapable of taking our program to the next level (getting volunteers to fill out evaluations after each session, having group meetings every 2 weeks). I also often find it challenging for a bit after being with typical kids and also after being around other kids with special needs who have a less challenging time than Sarah does. As I have said before, I know in theory I just shouldn't compare, but I do and then I can feel depressed. I also notice a weird correlation with kicking our program up a notch in the intensity with questioning what we are doing in the first place asking all of these fabulous volunteers for their time and putting in so much time of our own. I have a new Amy-watching volunteer (Noah's brother Ari) and Adrian is increasing his SR time to 6 hours a week. My crisis in confidence was wondering if this program is really doing anything (though if anyone else were to question me I would defend it staunchly). I so easily acclimate to Sarah's new abilities that I forget how far we have come. And progress feels slow. We get tiny improvements frequently but overall this is a big mountain to climb.

So I had two sessions of crying in the SR room and being far from the best that I could be. Then I came out of it, thanks in part to just deciding it was really ineffective to be so morose and thanks to reading the latest Christian Science treatment for Sarah and thanks to listening to some Jason Mraz songs ("I won't give up," "I'm Yours," and "Lucky.") His songs can shift my mood dramatically. Why do I not always play them? I don't know. Because when things are easy and going well then I don't think I need to keep doing things to keep them feeling good. 

I did write up a short form for people to fill out so we can track language improvement and what games work best for getting language, eye contact, etc and what works best to build out of joining in a way that gets her attention. I think it will be helpful if all of us who work with Sarah pool our resources and share our ideas so we can be more focused in our work. I contacted a friend who has an electronic form for doing this and I will be learning how to use it soon. I still feel daunted about meeting every two weeks. It is very difficult to coordinate so many varied schedules, especially during the summer when so many people have travel at different times. What I need to remember is that even if we don't quite hit that goal we are still doing good work and it is still making a difference (despite my times of doubt I am not willing to not do this). And if we can meet more frequently then all the better. 

I have also been trying to clarify my goals for this week since I think having a small set of concrete goals might help us all be focused and notice our progress. So my current small set of goals is:
1. to have Sarah say "yes" clearly instead of "aya" (much as I adore the way she says "aya.")

2. increase attention span (this is what we all are already helping her with beautifully in the various ways of playing and keeping her attention with us when her attention is available; this can include calling her back to a game instead of immediately getting the newly requested item)

3. attend to Candyland in some manner (talking about the box, playing with the box, singing the name of the game, playing with the little people, talking about the pictures on the board, wearing a crown, anything with the cards, making a candylandesque board out of pieces of playdough, writing candyland on the white board and any words that pertain to it, following a path around the room, with the eventual goal of actually playing the game.)

As often happens when I get depressed about things with Sarah, she herself then does something to inspire me and show me that she is still growing and learning. This week she started wanting to cook scrambled eggs so she has done so with with my assistance at least 3 times. (pictures below)

Sometimes things don't go according to plan and sometimes that is an unexpected gift. On Friday I had to take Sarah to the daycare where Amy goes while I went to work. When I showed up to get the girls they were playing together on the same play structure, easily sharing the space together. Of course they play together at home but there aren't other kids at home or as many different play areas. So here they were really choosing to be together amicably (which also does not always happen at home; lots of quibbles over toys or even parent laps lately). That touched my heart.

Yesterday Amy was having a hard time going down for a nap; Sarah climbed in Amy's crib and lay down. I asked if Sarah wanted to nap with Amy and Sarah said yes. Amy was still having none of it. Then I asked Sarah if she would like it if Amy shared her room and slept in there. Sarah said yes. Since the crib is too big to fit through the doorways we decided to ask Sarah if she wanted a new big bed and she said yes and started talking about it a lot. We have a frame that has been in my family for a few generations so I was excited that we could now use it. I had worried that Sarah wouldn't want to give up her car bed but she seemed quite eager to switch. When Carl was helping her go to bed last night he asked her where the new bed should go and the conversation went something like this:

Should the new bed go by the window? no

where should it go? on beda beda

on your bed? aya

on top of your car bed? aya

you want the new bed on top of your car bed? aya!

I guess that is an argument for bunk beds 

(bunks will eventually come here from Carl's parents, but I want a few good years with her in my old bed first)

Lastly, I would like to extend deep gratitude and appreciation to my uncle and aunt, John and Jane, who have generously funded my Son-Rise training and the phone consultations and the Outreaches and will continue to do so. It is invaluable and priceless support, allowing me to fully follow my dreams for Sarah in the best way I know how.

Really lastly, I have decided that it is ok to have wildly hopeful daydreams about Sarah's future. My current one is of her graduation speech at Swarthmore where she says that Swatties can do anything and that she is proof. We will have our whole families and the whole Sarah-Rise team there and all of us will be laughing and crying and deeply happy. I share this in the hope that happy dreams create good energy and that good energy helps us all and that by aiming high we never know where we might end up. Bears and Samahria were told they had no hope for Raun. They decided to give him all the loving energy and input that they could. He recovered completely from severe autism, graduated from an ivy league college, and is now the CEO of the Autism Treatment Center of America. 

Perhaps I can fully accept Sarah for who she is and love her wildly and deeply as I do no matter what and also trust that she has immense potential.

Wishing you all wildly hopeful daydreams (and infrequent times of crashing and burning).

July 15

17 hours! Part of that was the outreach and part was having my mom and stepfather visit, each of whom did time in the room and also watched Amy while I went in the room. This was a short week of days for SR compared to usual since we went away Fri-Sun.

I noticed that Sarah's weight had dropped by about a pound so decided to stop any further attempts to reduce dairy and to go back to full-on dairy as we used to do. I'm still trying to get in a variety of healthy things but for now I think we really need her to be able to have half n half for her milk. Soy milk just doesn't cut it. Since she often has 1-3 cups of milk or chocolate milk in a day that is a big difference in calories. I think soy milk is roughly 80 calories per cup. Half n half is more like 240. What was then slightly alarming was that the day I went back to the full load of dairy (Wednesday) Sarah had a lot more of her excited hands and jaw and sounds. Luckily I am married to someone who reminds me that we don't have enough data and shouldn't immediately freak out and assume causality. After all, the change was also made after several intense days for Sarah. We had had the outreach and then Mom-Mom and Pop-Pop visited Mon-Thurs morning. This also coincided with a visit from Kathy O'Neil who does Anat Baniel Therapy and Sarah had two sessions on Tuesday. All of this was good and it was also different from the norm and potentially a lot more for Sarah to process. Maybe this was just her processing. Anyway, we have stayed the course to get her weight up and after 3 days of increased hand/jaw stimming it seems to have gone back to what we were used to as the new normal (only with men's pants/shorts or with doors). It was actually helpful in some ways to have the spike in that kind of stimming because it pointed out just how much it had stopped before.

Mom-Mom and Pop-Pop (Janet and Ralph) noticed significant improvements in Sarah's language and eye contact compared to when they were here in March.

Sheri said her session with Sarah was one of the best yet and that Sarah was connected the whole time.

Normally I instruct volunteers about how to respond when Sarah cries and wants me during her time in the SR room. Thursday I got to experience a lot of her crying and wanting to leave and wanting someone other than me. She is devoted to Noah, our newest volunteer, and was trying to climb the door to get to him. Inspired by Megan, I drew pictures on the white board of him riding his bike and Sarah saying "come in No-na." We also wrote a letter to him with me asking if she wanted me to write a certain thing and then she said yes or no; many of the ideas were hers. We had two hours for our session so we had lots of good play and some joining too. The crying bits didn't last too long and she was very attentive as I drew the story and wrote the letter (some of which read something like: "ride your bike here on the sidewalk. come in. come upstairs. I am crying because I miss you.")

On our weekend away Sarah really liked hanging out with Joel (and his shorts) and at least once went over to him, looked at him and said hi, without our prompting any of it. She also got much better with pronouncing Kirstin and had a good time in general with her cousins Zohar and Noa. (Amy and Noa are very close in age and it was super cute when they had dance parties to Amy's musical flowers).

Megan had suggested playing Connect Four with Sarah, a game we don't yet have. As luck would have it, the house we were renting this weekend had it! She was interested right away (of course, with little plastic pieces). At first I just joined with what she was doing and then I started talking about dropping the pieces in the wall and then moved on to us each doing a color and taking turns. When I started guiding her to block me and telling her I was blocking her she cracked up. She loved the word "block"  and would say "block eyou." So we played the game for real twice and each of us won once. I was certainly guiding a lot, but it still felt real.

There was also a chess set at the rental house and Carl and Sarah sat with the board between them and he told her some of where the pieces went and she seemed attentive at least for a solid few minutes.

We have shifted away from stepping Sarah through words sound by sound and are now telling her what piece was missing or emphasizing a part of the word but still saying the word fluidly. We also just ask her to try again to say the word more fully. She is really trying. She pauses and thinks about it and then tries, sometimes sort of successfully and sometimes the word gets more confused but it is lovely how much she is willing to try.

Foodwise, we are now telling Sarah she has to stay seated throughout the entire meal, until everyone is done eating. She is really not thrilled with this and tries her utmost to leave. The good thing is that usually once the storm of wanting to leave has passed she then eats more.

July 8

We had our biggest week ever: 19 hours!  This included 2 days of Megan being here for the Outreach (my week tally is from Sun-Sat).

I forgot to mention a highlight from 2 weeks ago. Grammy and Granddad sent the girls a Cozy Coupe (little yellow and red car they can drive by moving their feet; this is the best selling car in America) and it had to be assembled. Carl did so with help (true help!) from Sarah. The girls have then been getting lots of practice with sharing and we get lots of practice enforcing the sharing.

Highlights from this past week include visiting a friend from Boston at her parents' house outside Pittsburgh. When we arrived, 2 boys Sarah's age were sitting in the kitchen with their grandmother playing Othello. Sarah went in (after we said no more door play) and sat down next to them. I was anticipating some isming on the boys' shorts or with the game pieces. Neither occurred. With the help of the grandmother Sarah put a couple of pieces on the board. She was quiet and calmly attentive. This was a beautiful, "normal" (but not for us!) moment.

Friday night we went to an outdoor concert briefly before bedtime. We were sitting on blankets with friends and the piece of music ended. The adults kept talking while Sarah, attentive, clapped.

I had recently been despairing regarding the shape sorter toy that we have (blue and red ball with holes for the plastic shapes to go in). I was feeling like Sarah was at basically the same level as Amy of still needing me to find the appropriate hole. Then in a moment of me being blessedly unhelpful, Sarah picked up a piece, turned the ball, found the right hole and put the piece in. She did this 5 times! Sometimes she tried the wrong hole but then she figured it out on her own. I was stunned and thrilled. Sometimes I just have to get out of her way! It is so easy for me to make assumptions about her lack of ability even as I am hoping to go for the gold in terms of her possible ability.

I continue to reduce her dairy and sugar intake but we have been wondering if some of the occasional bedtime manic energy that she has might be due less to sugar and more to having an empty belly because she didn't eat much when not given her preferred items. This will take more observation and maybe there is no explanation. So often bedtimes are no problem and then maybe once or twice a week of late they have been hard. Maybe it is pre-poop. This is another supposition that will require more observation. Last night she was manic and was saying she wanted to eat. I tried a trick a friend suggested of offering a banana (something she likes but it isn't always a favorite food). She snarfed the entire thing. And then was still wound up. Tonight she had a full belly but may also have been tired because of not getting enough sleep the previous night and she now got the cold that Amy has been dealing with.

We had a super awesome helpful Outreach with Megan Simpson!!!! I cannot stress enough how helpful it is. There are some things that I can't see because I am so close to it all, such as how much Sarah has progressed in some ways since April when Megan was last here. We have achieved a 10 minute attention span!! Better eye contact, less isming (exclusivity), more talking. Some of these I knew but it is still helpful to have a professional,  who is really aware of these things and who doesn't see Sarah as often as we do, give her opinion. We are now keeping some of our original goals, such as helping Sarah with the clarity of her language, and we are adding new goals such as helping her participate in games with rules and turn taking in the way the games are meant to be played. I also understand better that just because we have that as a goal doesn't mean I go in and try to get that in full the next time I go in the SR room. It means that that is my vision for the future and what I am building towards, all the while being fun and engaging so that there is a reason for S to want to play games or take turns. We are also going to increase modeling imagination play as well as friendship skills (saying hi and bye, keeping her pants on). And we will work on school skills (tracing, matching, drawing). This is when we as adults use our thinking to see the big picture and find games that loop these concepts in. We are trying to be the equivalent of a Mo Willems book as opposed to a Dick and Jane book, no offense intended to the D and J books but they are slightly dry compared to the brilliance of Mo who still has very simple words and concepts but makes a fabulous story. Our goal for her attention span is now 25 minutes. I have gotten this a couple of times recently so we are already on our way. On the one hand going in the playroom and doing our bumbling best is awesome and so much better than nothing. On the other hand, there is such an art to using our time with Sarah as effectively as possible. Megan is an artist of play and is helping us to become better artists.

To conclude, here are Sarah's Rules to Live By (statements she makes frequently):
Don't fall in the hole
Don't pinch your finger in weights
Don't get bubbles in your eyes
Don't bump your head on the table
Don't fall down the stairs

With any of these she then may say with her seemingly slightly southern accent for some words "oush piece ice hrt lot go hobital" (Ouch piece ice hurt lot go hospital).

July 1

This past week we got 16 hours of official time, 11 of which I did. 

Both Gregory and Carl had some of their best sessions yet. Gregory incorporated the idea of getting a green light from Sarah, meaning that she is ready for input. He was focusing more on connecting than on language, which resulted in some lovely language. 

Carl's description of his time reminded me that we can trust in Sarah's playful nature. Sarah likes to put toy candles in between her toes and when team members join her in this she takes the candles out of our toes to put in her own. As she went to take Carl's candle he moved his foot away from her and tried to keep the candle away by moving his foot. When she took the candle he made a big "aagh!" noise and she cracked up. They played back and forth with this, both cracking up and both making big noises when candles were taken out of toes. This is so delightful! 

One of Sarah's favorite books of late is The Little Mouse and The Big Cupcake. She especially loves the words "wide" and "large." We use these words often and I do exaggerated facial movements and voices for saying "open wide and take a large bite." When she tries to say the words herself she is often laughing so much she can barely get the words out. It has helped to use these words in other areas to shift her resistance energy (eg. it is time for the potty to open wide so you can take a large pee). This has even helped with Amy taking her vitamin, which she has been less than thrilled with since we switched to the polyvisol that contains iron. When I tell Amy to open wide she does and lets me put the dropper in her mouth.

On Monday, with the priceless assistance of Grammy and Granddad, I took Sarah for her annual hearing test and to get bloodwork for both girls (lead test). Sarah did the best she has ever done in terms of cooperating with the hearing test. The part she hates is having things stuck in her ears but she let it happen (with some resistance). Her hearing is normal. Yay! She also did a great job getting the bloodwork, as did Amy. Both cried a lot, but that is to be expected. 

There are still many mini tantrums throughout the day but I feel like Sarah's potty cooperation and general cooperation/listening have increased. We had two miraculous times of her coming inside the house willingly and without fuss after I said it was time to come in. 

Sarah also came out to "help" with the laundry twice, once when I was hanging it up and once when I was taking it down. She mostly played with the door or the bag of clothes pins but she also attempted to put clothes pins on the racks.

She has been drinking her yogurt/fruit shake almost every day. She's still constipated. Maybe there is a bit of a lag for her system catching up. Also it is super hot and I can't always get her to drink as much water as I think she should. I have been starting to decrease her dairy intake, substituting soy yogurt, soy milk, and coconut milk products. She is still eating dairy just not quite as much. So far no complaints. I think her obsession with ice cream is lessening as she gets used to not having it after lunch and most days none after breakfast. 

Sarah is coming up with more creative ways of moving her body and gaining confidence in what she can do. One day I saw her pulling herself across the floor on her belly, using her arms to move. She also regularly goes upstairs by holding the railing with both hands and taking her left leg (which is lower as she faces the railing) and crossing it past her right leg to reach the step two steps up. Sometimes she doesn't quite manage to pull herself up but then she adjusts and does just one step up. I remember being little and coming up with challenges for myself to make routine journeys more interesting. This seems like what she is doing. Today she started climbing up our big yellow slide and then sliding down. It is the climbing up that is amazing since she isn't using the stairs but is going straight up the slide itself, like a little monkey.

Her interest in drawing seems to have increased a bit. She has worked on drawing circles during her time with Marilyn and with Carl and a little with me. Most of my drawing with her involved her drawing a line and my copying it right next to the mark she had made (she later called these drawings wires). I was hoping this would translate into her copying my strokes of more complicated shapes but she's not there yet. Still, I can tell she is getting more control over the marker. 

We had a brief but lovely time playing around the big blue yoga ball. She has been enjoying bouncing on it or lying back and having me roll the ball so she can touch her hands to the floor. I also roll her side to side while singing about a big clock going tick tock and then a little clock going ticki ticki ticki tock. After watching a short video sent out by the Son-Rise center about more creative things to do with the ball I had the idea to pretend it was the big rock in one of Sarah's favorite stories (Mo Willems' I Will Surprise My Friend). I said some of the lines leading up to when Piggie and Gerald scare the pants off each other and then I would pop around so I could see her and pretend to be surprised. This only lasted a couple of minutes but it felt like the kind of fun creative play that I often aim for but don't always hit.

Sarah's language continues to expand. Today I think she said her equivalent of "lie down mine leg take nap on couch together." She was talking to Carl and she wanted to lie down with her head on his leg. It wasn't nap time but it was super cute, and the amount of communication, even if not fully clear or grammatical, was amazing.

Lastly, Sarah continues to like making spaghetti out of playdough (I then, of course, open wide and take a large bite).