October 27

This week we got 15 hours and 20 minutes.

This process sometimes feels sort of like magic, even though I know exactly what steps we are taking that seem to make a difference. What feels like magic is that we play in these specific ways in the SR room (child centered, joining, celebrating, building) and then Sarah seems to have an easier time and make progress in areas outside of the playroom.  We went to the playground this week and Sarah seemed more alert and less ismy than usual in playground settings. She did follow some kids around a bit, watching their legs and feet, but with much less finger isms/tension and without many "eeee" sounds. She ran up to a dad once and touched his shorts. When he said hi then she looked at him and left. In the past she would have stayed with the pants much longer. She was also really watching the other kids in a calmer, more attentive way. It was the first time that I can remember seeing her at playground and feeling proud, which really says more about how much I have shifted internally than it says about her, though her progress certainly helps.

As I let go of my past bitterness over her condition (why me?) I am now feeling so grateful (thank God Sarah is as she is!). I truly feel like I am shifting into a happier way of being in all ways. I certainly have times that feel struggly but I'm now looking them in they eyeballs more instead of hiding from them or thinking someone else will fix it. I am happier doing laundry and dishes because I'm deciding that if I'm going to do them then I might as well choose to be present and acknowledge that I want to do them (or have them done) and that I don't have to be hurrying to make them done faster than I can actually do them. Often my past resistance to cleaning the kitchen or putting away clothes has been from a feeling that these tasks needed to be done yester-minute, which means that I move grumpily or tightly through them instead of thinking "oh, it is now time to put away clothes. ok. isn't it great that I have these clothes to put away? this is just the right thing to be doing now."  I am happier regarding Carl's twice weekly rowing because I am choosing to see it as him taking care of himself so that he can be healthy for his family.  This is a shift from my past feelings of grumpy annoyance that I had to do even more childcare on my own. This doesn't mean that I'm not arranging help for myself at these times when I can; it means I experience the time with more acceptance and ease. Same circumstance; I just changed my belief about it. Once again, it is very clear what process I am going through to obtain these happier shifts, and yet part of this also seems like magic. My time in the Sarah-Rise room is helping me be able to choose happiness/peace/presence/love in other situations outside of the room. 

Tonight while Sarah and Amy had their bath, Sarah started putting toy clothes on her toy bath dolls. This was spontaneous and to my knowledge has never happened before. 

Earlier in the week, Sarah said something in the SR room while facing the rug and I asked if she was talking to me or to the rug. She said "rug." :) That just goes to show me! 

Halloween has never been something that Sarah was interested in and it's still not. We went out today as a family to get her a costume. We looked at almost every option in her size and she rejected all of them. My past self would have picked something anyway and forced her into it later. This year we left without a costume. I was feeling very grumpy and disappointed that I had wasted our time and I was thinking she will never be into Halloween and wishing she would be. So... Carl pointed out that it was really great to have done the trip to the store because Sarah actually did consider the costumes and made a definite choice that she didn't want one. I also want to remember that 1) it is ok if she never is into Halloween and 2) maybe she will be next year (if not, refer to #1).

Carl took Sarah to a store again and discussed ahead of time how it was important that she stay with him. She did a great job, with a tantalizing door in view. Similar occurrences have happened all week with me as well, especially if I tell her when she will get to play with the door. I can tell things have improved with this because I keep looking around expecting that she will be heading away from me and as I'm searching for her I realize that she is still right where she was a minute ago. 

My friend I. came over for lunch this week and noted that Sarah was much more alert and present and hugely more verbal than she was a year ago, which was the last time we had seen each other. Such additional witnesses to Sarah's progress are always helpful to support my own observations.

October 21

This week we got 14 hours. It has been a full week of wonderful Sarah moments and of my own learning. I feel twice as effective as a Sarah-Rise team leader and in the playroom.

Coming back from my trip with the intention of not man-handling Sarah or doing so much for her but rather encouraging her to do more for herself, I was astounded to notice how often I usually do things for her. I was in awe of Carl encouraging Sarah with words instead of doing things for her. He is wonderfully patient and creative and unruffled. I have been surprised by how often Sarah has responded to verbal requests when I ask just a little longer than I used to. In the past whenever she was playing in the driver's seat when it was time to go I would go around to the driver's side door and pick her up and carry her back to her seat. This week I just asked a few more times in different ways and she climbed back on her own. Different ways of asking include singing like elmo (la la la la, la la la la, sarah's carseat, sarah loves her carseat, her seat belt too) or whispering or general singing or explaining why I want her to do something or saying that I will give her a certain amount of time to do it after which I will pick her up or do it for her. 

I think I say every week that Sarah's language has improved. It seems to improve daily in some way. J. (Mom-Mom) noticed that Sarah's language had improved markedly since September. They had a moment during this visit when Sarah was sitting on J.'s lap and pointing out her nose and glasses. Sarah then pointed to J.'s necklace and said her attempt at "pretty." This may be the first time she has complimented something someone was wearing in a verbal way (we know she gives compliments by hugging pants). 

Sarah has also commented that it was pretty and "human" (meaning "humid") outside. She pointed out a "squil on whya(r)" (squirrel on wire). While walking, Sarah said "wash bushes." J. said "watch bush?" Sarah said "ez" to make sure J. knew it was plural "bushes." When we picked Carl up from work one day Sarah said, "go to party." She hasn't been to a party at Carl's work since last Christmas. When it was bedtime on Friday she asked for Pop-Pop, remembering that he had helped with bedtime a few months ago. This is so exciting because it gives us a glimpse into Sarah's memory and her thinking. I love that she wants to convey all of this to us. 

Sarah really wants to be able to go down a hallway in the food co-op. This is now a subject that comes up at least daily and we discuss how it is only for people who work there.

Sarah was drawing in a notebook and said her attempt at "writing." She also drew a long vertical line and then as she added dots around it she said "daw leaves" (draw leaves). 

She sang her strongest alphabet yet today. We are also working on singing the itsy bitsy spider and twinkle twinkle little star. I am just leaving out more and more words and letting her fill in more and more. It is very cute how she gets quiet when she isn't as sure of herself.

I am so much clearer now after Maximum Impact about Sarah's isms. Isms are any repetitive activities where Sarah doesn't need anyone else there or semi-exclusive repetitive activities where she includes us but only minimally.  These isms are Sarah's way of taking care of herself and processing a world that may be more overwhelming or confusing than it is to us. To join her in her isms we learn from her how to play her game. It is more than just imitating; it is joining. In the past I said if she looked at what we were doing then that was an invitation to do more. Technically, yes, but now I am having all of us who work with Sarah wait for a full invitation of eye contact and/or verbal communication. Multiple people have noticed this week that as we do less and speak less that Sarah is actually copying/joining us more, initiating more, and speaking more. This isn't to say she doesn't go for long periods of time isming, but that when she is ready the connection seems to be better.

We had a wonderful team meeting yesterday (with excellent childcare provided by J. and R.). This is the most amazing group of insightful, loving, and thoughtful people. Have I mentioned that I am blessed? The best part of the meeting was when Sarah came into the room. It was like a surprise party for her. She was clearly so delighted to see all of her friends. She made eye contact with everyone and said her best attempt at people's names and made the rounds of touching everyone's pants, with G.'s corduroy as her favorite.

October 14

I was away this week for more Son-Rise training and with the help of  Sonia and Carl and my volunteers we still got Sarah-Rise time! We got 15 1/2hrs and I only did 2 of them.

The name of my training course was Maximum Impact and I am soooooo glad I attended. It was one of the best weeks of my life. AMAZING. The people who run ATCA (Autism Treatment Center of America, home of the Son-Rise Program) are some of the most deeply loving and insightful and helpful people I have ever encountered. I learned so much about how to run a more effective program and how I want to live my life in general. I feel happier and freer and like I can have a more expansive wonderful life.

In case you find yourself thinking, "gee, I wish I had a kid with special needs so I could have such an amazing experience too..." there are easier ways. :) The Option Institute, which is the overall home of ATCA and Son-Rise, offers lots of classes for anyone, including a parenting class for parenting in general. And it is absolutely beautiful there. The foliage at this time of year was breathtaking.

My week helped me clarify my purpose and goals for Sarah. My goal with Sarah-Rise is to help Sarah thrive and flourish to the best of her ability. I will do this through loving her completely and unconditionally. I will look at any place within myself that gets stuck with loving any part of who she is.

I can still set boundaries in our life together so it isn't a five year old running the house, but I can do so without anger. If I do feel angry or sad or hopeless then I can ask myself why so I can see if I am acting on a belief that I'd rather not believe anymore. For example, if Sarah is not figuring out a puzzle and I feel upset...why am I upset? I'm upset because I believe if she doesn't figure this out now then she will never get it and I have failed as her mother. is that true? hmm, I guess not getting the puzzle in this moment doesn't actually say anything about the next moment and it doesn't actually reflect on me as a mother. It means she is having trouble getting a puzzle piece in in this moment.

I had a dialogue with Bears about my feeling sad about the idea that maybe Sarah will never be a typical child. He asked "why, if you don't get what you want, would that be so painful?" For me that is a very freeing question. I haven't yet figured out my full answer but asking the question points out that there is a choice and that maybe I can say "I wanted a typical child, she isn't. Oh. Ok. I can still have an awesome life being me. It doesn't actually have to be painful or mean that I am somehow a bad person. It just means I didn't get what I thought I wanted." I think sometimes I feel sad or angry in the hopes that it will motivate me or change something but ultimately I then feel sluggish and less motivated and just want to eat sugar all day. When I am feeling good then I am actually a more motivated person and mother.

I now understand so much more about different ways to celebrate Sarah and different ways to request things of her. I had thought I was requesting things for a long time (eg. that she put on her pants in the morning). Now I realize I was asking for about 20 seconds and barely scratching the surface of fun ways to request and that before I can clearly request I want to be comfortable in myself with the possibility that she might take hours to put on her pants. If I am comfortable then I can request over and over and over in a light and fun way. If I am uncomfortable and needing her to do something so that I feel happy then my requesting comes from a tight, frozen place which will be much less effective. And why are pants so important anyway? Isn't my communicating a deep love and acceptance of my daughter actually more of a priority? Don't I learn best and want to cooperate most when I myself feel deeply loved and accepted for who I am?

I also learned how to run more effective team meetings and feedback sessions so that our team can be a more cohesive unit.

Sonia noted how Sarah's language has continued to improve. I feel like I notice new words, clarity, and thinking abilities daily. When I called some evenings Sarah would tell me (when prompted) goodnight. Last night when I was giving her a bath she talked about sharks and fish swimming in the water and then said " [play] soap suds in a bath tub." The only word that wasn't fully enunciated was "play."

I am grateful for Sarah and her condition...if I had had two typical children then I think I would still have felt like a harried, overloaded, and overwhelmed mother at times, hemming myself in with shoulds about motherhood, but not asking for big help. Sarah being who she is has helped me learn to ask for and receive help and support in ways I never dreamed of. I had the epiphany while driving that I am never alone in this. If I ever feel stuck there are so many people I can call for help. So many people have thought so clearly about how to love these children with unique challenges that I really don't have to figure it all out on my own. So next time I am struggling I won't wait so long to seek help. The other participants at Max Impact were as impressive and insightful in many ways as the instructors. There is really a world-wide Son-Rise team, with so many people striving to be forces of nature for their children. We are all going to be whooping it up in our playrooms across the globe.

I am grateful forever and always for my mom for being my biggest champion in all that I have ever done. And for making these training weeks possible by coming to be with Amy. And for consistently helping me live a fuller and happier and Jenny-er life.

October 14, by Carl (Sarah's dad)

Since Jenny and Amy were away this week for more Sarah-Rise training, I got to have some quality Sarah & Dad time earlier this week and then my sister Sonia arrived Tuesday to help out. When I mentioned that it was just me and my daughter to another engineer at the company we're working with right now, he said, "So, ice cream for breakfast and legos all day, huh?" It was pretty funny to very truthfully answer yes since it was literally what we had done the day before.

So, here is another Sarah-Rise Update from a little different perspective than usual.

Hanging out with Sarah is really fun these days. We can have real conversations, make jokes, laugh about things, and she often genuinely impresses me with something new. At the same time, a full day with Sarah is long and my patience with certain requests definitely decreases as the day goes on (as does her tolerance of my saying no to those requests). As with most endeavors, living a day in another's shoes gives new respect and understanding.

As a parent, I think there are many tensions that play out in our interactions with our children, and one that I thought about this week is impatience vs laziness. I'm sure there are other words with more positive connotations that could work just as well, but these are the ones I was thinking about so I'll keep them. There are a number of things that need to get done every single day with Sarah (often multiple times): getting dressed, brushing teeth, etc. Many times I am impatient during these events, especially if we have a time deadline, and then I can give up quickly and do many parts of these tasks for her if she is not responding to my requests. But I am also lazy and would really rather not put her pants on for her. This week I decided to really embrace the lazy side and just reject the impatient side. I wanted Sarah to do everything and I was prepared to wait.

So Sarah got dressed almost all by herself every day this past week. I still guided and encouraged (sometimes a lot) each step, but I didn't _do_ anything for her. This made a really big difference and I feel like she responded to it really well. A common management problem is to delegate responsibility without delegating authority, and I realized that I was doing something similar with Sarah. I was requesting that she do these things but then I wasn't letting her do them the way she wanted or on her timeline.

This was an area where it was really helpful to have Jenny at the training because she would tell me about what she was learning when we chatted each evening and then I could apply it right away. As Jenny mentioned in her update, one of the things they worked on was being creative and persistent with requests, and working on expanding the time that it feels OK to continue making the same request (it is amazing how small this is by default - 20 seconds feels very long when I feel like I am being ignored). So the next morning I was much more creative in how I asked Sarah to put her pants on. The result was that we both had more fun, I had no need for being impatient, and I got to enjoy my laziness.

Another place that switched for me this week was a re-realization that Sarah is extremely capable of learning many things but she often needs more practice. Jenny and I had been talking recently that it would be really improve our quality of life and open up new family activity options if Sarah could stay next to us when we went places instead of running off. So this week I decided to practice this. Sarah and I went to a few stores (without having anything that absolutely needed to get done at those places) and beforehand we talked a lot about how important it was that she stay next to me and not run away. Then at the store, I tried to continually talk about this and praise her when she was doing it and talk with her right there when she started straying away. And the whole experience felt really different and hopeful for me. At some point she still ran away so then we left the store and I talked about why we left, but she stayed with me much more during that trip than I had realized she could without me physically holding her hand, pulling her back, etc. Practice is important for everything and these skills are no different. Sarah will get there - she just needs practice.

When we got back from a family walk, a couple of the kids from our block were playing behind the bushes next to our house looking for bugs and generally having a good adventure for a beautiful fall afternoon. Jenny and Amy went inside and Sarah and I stayed out since she really wanted to play in the alley. After I said no to this, she said "Play kids" and looked towards the two kids from our block. So I helped her push through the bushes and after a couple times going back and forth through the bushes in the same way that she loves going through doors, she sat down next to the other kids and started playing in the dirt. The older of the two kids tried to include Sarah and show her some of the bugs that she had found, which didn't get much interest, and then they just sat together down in the dirt for a while. When the other kids wanted to go do the next thing, they asked Sarah if she wanted to come, and Sarah simply said "no" and kept playing in the dirt for a while. Especially in the Sarah-Rise room, but elsewhere as well, Sarah's ability to make eye contact with people, tell stories and jokes, and genuinely connect with people has grown so much. So far this hasn't translated over to her interactions with other kids much. So it was really great to see even this very small interaction take place, knowing that Sarah initiated it herself, and I could start seeing that with practice, Sarah will learn this too and her world will keep getting richer and richer, as will all of ours.

October 6

This week we got 20 1/2 hours. I'm sending out this email before the week is quite done because I leave tonight to start driving to MA (just with Amy and my mom meets us there to care for Amy) for the next Son-Rise training session. I am spreading the drive over two days because being in the car is not Amy's favorite past-time.

What a difference a week makes. What a difference it makes to have Carl at home. What a difference so many little factors can make. 

We had M. here for an Outreach Thurs/Fri, which was as amazingly helpful as always. 

Highlights from the week include last weekend when Amy was napping and Carl and I needed to figure out the plan for the afternoon, as we so often do on weekends. This time we asked Sarah to join us in our meeting and "Team-member Sarah" (as I called her) sat on a step stool with us, bursting with exuberance. It was so adorable! 

When Sy. asked Sarah what silly faces she could make while they were looking in the mirror, Sarah stuck out her tongue. I didn't know she knew the idea of making silly faces like that. Sometimes when I have directly encouraged her to stick out her tongue she hasn't, so this is doubly encouraging. Sarah also attended to Twister more than she has in the past and when she asked Sy. for something she would attempt to say her name first. That is relatively new to address someone by name as part of a request.

Last Sunday we had friends over who hadn't seen Sarah in a while and E. noticed a big difference in the amount of eye contact from Sarah and in Sarah's language. 

M. noticed an improvement in Sarah's clarity of language and in her flexibility and willingness to attend to new games. She also thinks Sarah is ready for more imagination play, suggesting that those of us who work with her "be the play we want to see." The thing I notice every time M. works with Sarah is that Megan fully trusts that Sarah is capable of big play, of silly play, of normal play. The same way that I endeavor not to dumb-down my language, M. doesn't dumb down her play. I don't think I do either but I think M. ups her play to a level to which all of us can aspire. It is always beautiful to watch. 

It is also wonderful in general how much Sarah loves her volunteers and talks about wanting them to come in. She brightens when they arrive and often scampers off to the playroom, if she isn't already there waiting for them. Yesterday I hadn't told her ahead of time that G. was coming and the morning was different from her normal Friday morning. When G. knocked on the playroom door and came in Sarah was clearly thrilled, as if receiving an unexpected present.

Last week when G. was here he noticed that when Sarah is upset her words come quickly and pretty clearly, which is not the case with all kids with speech challenges. 

Another reason this week has been different is that I received a craniosacral/reiki session from my friend K. that was profoundly helpful. I am still realigning and adjusting to some new beliefs that I feel more ready for now. Mainly I think I am ready to believe that nothing is wrong with Sarah. Yes she is different, unique, and needs extra help. But, perhaps nothing is wrong with that. If nothing is, and never was, wrong then maybe I can let go of my urgency to fix it. If I let go of the urgency I can actually have more space to be with Sarah where she is and ultimately help her grow and flourish more. Then I started worrying "why are we doing sonrise if there is nothing wrong?" Carl reminded me that we are doing Sarah-Rise not to fix Sarah but because it is the best way to support our child. These new beliefs are things I have to consciously choose and re-choose but I feel good when I do so so I will remind myself whenever I can that this is how I want to be thinking.

After getting feedback from M. about my playtime with Sarah, I went back in the next day and had one of the best sessions I've had in a while. M. reminded me that I can lovingly keep after Sarah for an answer if I ask her something. (If there are times I wish she would shut her trap, why would I ever think she is incapable of answering me?) She also suggested bringing in something new when I enter the room. I brought in some pages to color that had pictures of Donald and Elmo. I modeled coloring and invited her to color, asking her to pick which color from some choices I provided. As she moved to other things, such as pretending to be a lump in a bed, I was able to connect to Elmo being a lump or needing his fur colored so he could be a lump. When she asked for Mr. Potato Head I said first we had to give Elmo fur because otherwise he was naked too (she loves having Mr. Potato Head be naked). I know we have been over the idea of having a theme and intention in the past and I teach it to my volunteers, but somehow it had not been salient for me recently. This was a great reminder of how a theme can help me drive the session more while still incorporating every single thing Sarah says or does. We had a blast.

Sarah has never really been into Halloween, but she does love wearing my clothes, Carl's clothes, and Amy's clothes. Last week I mused that if only Sarah had suspenders she could wear my jean shorts without them falling off. Sy. made it happen.

Bears (the original Son-Rise dad) has said, "you can't stop a sunrise."  I hear that as: You can't stop a Son-Rise. 

You can't stop this Sarah-Rise.