April 26

I decided to increase my efforts at having hair-washing be a better experience for Sarah. In the past it was not so much of a problem but lately she screams a lot and fights our efforts. During one SR session, I brought in a laundry basket, our bath bucket, a washcloth, and a couple of bath toys. I climbed into the laundry basket tub and asked her to wash my hair. I played with saying, "no, no no"  and she laughed. Then I talked about enjoying it. I prompted her to do each step of getting my hair wet, adding shampoo, and rinsing my hair. No problem. Then she took a turn in our fake, tiny, dry tub. No problem. The next day I got into our regular tub with both girls and prompted them to wash my hair. Sarah initially didn't want to get my hair wet, but Amy did a bit with the washcloth and then I asked Sarah to use the washcloth to get specific parts of my head wet. She did so, though tentatively. I celebrated her efforts. Then I asked Sarah to open the shampoo bottle. No way. So I opened it and put some in my palm and offered my palm to her so she could touch the shampoo. She did, very tentatively. I shampooed and Amy helped suds my hair. Sarah helped rinse my hair with the washcloth a tiny bit and then I finished rinsing rapidly because Amy had peed in the tub! I laughed heartily at my foolishness for not having her use the potty before getting in the tub. What I value from this experience was noticing how tentative Sarah was even when it wasn't  her hair. 

Yesterday I started understanding a bit of a pattern to some of Sarah's conversation isms. Isms can be very clear when they are exclusive, repetitive physical behaviors. When they involve eye contact and conversation they initially might be harder to detect. The key is that they are repetitive loops of statements rather than real conversations and they can seem to come from nowhere. What I started understanding further is that Sarah reaches for these statements or topics of conversation when she wants a safe zone, perhaps because we don't give an initial ism enough space and we challenge instead of bonding. An example of a conversation ism is when Sarah quotes an Olivia book saying, "Oh no! The play be ruined!" To bond, my best response is, "Oh no! The play will be ruined!" with as much dramatic flare as I use when reading the book. Her eyes light up and we connect, repeating this line back and forth. When I attempt to challenge her a bit and I ask her if Pig Number Two (from the book) can jump over the moon to save the play, inviting her to jump over the moon" it is as if I haven't spoken and she just repeats, "Oh no! The play be ruined!" When Sarah is isming, the best thing to do is to bond, not to challenge. The bond will help her feel safe enough to have more flexibility to follow a request or rise to a new challenge. With an ism involving physical activity, the go-ahead signal that she is ready for a request or challenge, is when she looks at me for a while and/or says something. Ah, so how to tell when I can add something different to a conversational ism? I think it is mainly about testing the waters. I can try inviting Pig Number Two to say or do something but if there is no bite, then I return to bonding. 

Another conversational ism that Sarah loves is to talk about sock marks (the marks on her legs due to wearing socks). I am curious to pay more attention to when she chooses this topic. I am suspecting that it may be where she retreats when she doesn't feel like she can meet a challenge or request or if we don't recognize an earlier ism so continue trying to interact instead of joining. I am also thinking she may most often ask to watch something after I yell at her for something. Hopefully I can use this as empowering information rather than something with which to condemn myself for my occasional yelling.

I had a very humbling moment one evening when the girls were supposed to be in bed and then we heard footsteps coming downstairs. I felt myself getting grumpy, stern, and braced to hear yelling. Then it turned out to be Amy and I was immediately soft and easy and ok with things. Egad!!! Say it ain't so! In my defense, Amy doesn't usually yell about being told it is time to go back to bed; Sarah sometimes does. However, this was a startling moment about my beliefs and assumptions and the inequality of how I respond to my children. I am ever reaching for softer and more compassionate responses with Sarah, and I get many opportunities per day to practice!  

This weekend Sarah is getting several Anat Baniel Method Lessons. She has gotten them a few times a year since she was a baby. I love it when I see her face register some new tiny bit of information as she feels something different within her body movement. ABM is about creating new neural pathways through very gentle movements. An extra bonus to where the lessons are now is that Sarah gets to watch buses as they go past the window. 

Sarah and I had an awesome SR session earlier in the week. It started with her commenting on a picture of someone carrying flowers. I said it was a bouquet. She attempted the word. I offered her a bouquet of markers to smell. She said they smelled like tulips. I said my bouquet smelled like lilacs. Then my bouquet made me sneeze! Then hers made her sneeze. Then my bouquet was comprised of roses and I pricked my finger on a thorn. She giggled a lot while practicing saying "prick" and "thorn." She put a pretend bandaid on my finger. Then I held my bouquet too tightly and pricked my hand on a thorn, throwing my bouquet in the air so markers went everywhere. She threw hers in the air too. This moment is a perfect illustration of play when she is fully ready for my builds, challenges, and requests. The playtime was easy and fun; she was fully engaged. She was flexible and so I kept adding ideas and she kept going with them. Until I put the marker flowers in a vase and that led to a few moments of isming with putting the markers in and taking them out. I did the same with a different container and then Sarah shifted to wanting to make a pretend milkshake, which was interactive again.

At various times in my life I have wanted to do something because I knew it would help me become more of who I want to be. I was keenly aware of that thought when I chose to be a massage therapist. Perhaps Sarah was keenly aware of my unspoken wish when she decided to be my daughter. Or when the universe gave her to me as my daughter. Or however you want to think of it. Or maybe it is just that I really want to be my best self and keep heading in that direction regardless of my canvas of exploration. 

I hope you are having beautiful weekends, being gentle with yourselves, bonding in the life situations that call for bonding, and feeling easily creative when you have space to ask for more. 

April 20

Some weeks really feel like years in my internal landscape of thoughts and feelings. Last week everything was the best ever and I was totally understanding the perspective that running a Son-Rise Program is the most selfish thing I will ever do. It is. Running our whole Sarah-Rise endeavor is. I am doing it for me. I want to put in a ton of work now so that later in our lives things are easier. I put in the work daily to have things be easier soon. Almost everything about our current life structure is because I want it to be that way. So I may feel grumbly and complain about the number of dishes and how much food I have to make, etc, but it is all because I said that I want to do it this way and my amazing team of Carl and Sonia have said, "ok. let's do it." Yes, we are all doing these things because we think they will help Sarah, but they are still my choices about how to help her. When I can really keep this in perspective then the load can feel easier and I can feel embarrassed about all the incredible help I am receiving for my project.

Most of this week has involved me self-medicating with food as I try to figure out how to help myself feel nurtured and cared-for. Monday I was on child-duty for about 12 1/2 hrs, with the help of some volunteers with Sarah. It went easily and well overall and yet on Tuesday I noticed myself thinking, "hmm, if I was in the hospital for a few days then I would get to rest and people would take care of me." Red flag! That means I needed to change something right away so I felt more rested/cared for. Ideally, the change would be in my thinking, but while I puzzle through those aspects, I am using chocolate and toast with frosting to help. And they have. And maybe they haven't. I have felt more grumpy overall this week than usual. Maybe it was also having two times that were planned as being Jenny-time that got cancelled without much notice. The circumstances were totally understandable and ok, but I still got quite grumpy about it, probably in a flailing attempt to make sure I would get that Jenny-time. And I have gotten me-time. Two of those times involved going for walks to walk my grump out. And I have arranged for a little bit more regular me-time starting soon. I so appreciate that Carl, Sonia, and the girls see me at my grumpiest and still decide keep me and love me. And that my mom listens lovingly as I grump on the phone and then gently inquires if perhaps there are deeper reasons than those I am blaming for my grumps. These people are keepers!

Another reason that this week involved more emotional eating is that we got the results back from all the bodily output testing we did on Sarah a few weeks ago. I am so glad we did the testing, I know we can totally do all the new changes, and yet I am still feeling a bit sad and daunted. The biggest change is that we need to eliminate eggs and all milk products. The milk products had been limited anyway to homemade lactose-free yogurt and one brand of raw cheddar. No more. We also need to increase Sarah's intake of leafy greens and meat. We are increasing her probiotics and will soon give her custom-made vitamin/mineral supplements. Evidently her body has hardly any minerals and is low in vitamin C. She has a leaky gut, which means lots of toxins can get into her body, and she doesn't detox well. Given this new information I am amazed at how well she has been doing. What an uphill body for her body all the time. I am so glad we found this doctor to help us. In addition to her expertise, I think she has great kindness. 

I recorded a Sarah-Rise session recently, which I haven't done in ages. I have yet to watch it because of some computer space issues, but I noticed that I became a little more creative than I sometimes am in my sessions. Whenever I am recording or being observed I up my game a little bit. Part of our play involved making pretend milk shakes. I started squeezing one milk carton and making noises as if it was a nearly empty bottle of chocolate syrup. Sarah cracked up at my noises and after many encouraging prompts that she make noises too, she did! Her face was one of the cutest things I have ever seen when she tried to make her first empty bottle noise. We won't have that recorded because her back was to the camera, but at least my heart recorded it. 

We have been doing art projects! For our field trip this week, we went to the Center for Creative Reuse and stocked up on various supplies including two large wooden bears and a bag of buttons. When we got home, I got out the glue and the girls made Button Bears. I had been leery of art projects and the possible mess. It is going more smoothly than I could have dreamed. The girls love them and sit patiently at the small table that I set up in the dining room, waiting for many minutes while I gather whatever supplies they need for their project. So far this week they have made Button Bears, painted bears, painted clothespin dolls, dot-painted papers, and crayon colored pages. We have also done a little with pressing dough onto laminated letter cards from the Handwriting Without Tears materials. 

Yesterday, Carl was preparing to build a trellis to put in our back yard. Before he cut the bindings on the box, Sarah had taken the scissors and started cutting them by herself! One-handed. Without help. This is amaaaaaaaazing!

My Easter victory was the creation of homemade chocolate bunnies! I used cookie cutters placed on a cookie sheet lined with parchment paper. I made the chocolate from scratch and then poured it over the cookie cutters. A lot leaked out but that just created a bag of chocolate fragments for future baking. 

Last night Amy requested that I go in to give her a goodnight kiss. The room was dark and I moved my head slowly toward where I thought her head was. I felt two small hands come up and cup my cheeks. I kissed a small mouth. I heard, "Mom" uttered as if with a sigh of contentment that all was right with the world. And so it is.

April 13

So many things in my life are the best thing ever. Being born to my parents was the best thing that could have happened to me. As was meeting E and G, my dear friends that I have had since I was 4. Meeting Carl was the best thing ever. Deciding to be a massage therapist and then discovering the Alexander Technique were the best things ever. Having Sarah just as she is was the best thing that could have ever happened to me. Having Amy just as she is was the best thing! Finding our current house was the best thing! Running a Son-Rise Program continues to be the best thing ever. Having Sonia join my efforts is the best thing! Having my generous aunt and uncle as benefactors for our program is the best thing! Discovering Zumba has been the best thing! My substantial community of family, friends, professionals, volunteers, and helpers has been the best thing! I am sooooo amazingly blessed and I love the idea that so many parts of my life can each have been the best thing ever. They can continue to be the best things ever. There are certainly challenging moments at least several times a day, but I also have so many moments where I am so deeply grateful for my amazing life that I think I will burst.

After my last update, my mom pointed out how miraculous it is that we now chuckle over Sarah sneaking food. This is a child who used to seemingly not want to eat. Many people use food as a reward for other things. I used to use other things as a reward for eating. I would sing songs and be silly to get any bite in her mouth. I would walk or drive around and around and around. That was a handful of years ago, but at the time it was so real that I could only dream of a time when we would look back at laugh. How amazing that we are at that time. I still have ambitions for increasing the ease with which Sarah consumes a balanced diet, but those are ambitions of how fun and creative I can be and aren't born of a desperate fear about keeping my daughter alive. How wonderful!

I have continued to read Raun's book (Autism Breakthrough by Raun K. Kaufman) and it is sooooo good. It is so good to be reminded of all the fine details about Son-Rise and that attitude of love, acceptance, creativity, and hope. I love the reminder that it is not about changing behaviors; it is about helping Sarah want to connect more and more fully with people and that any behavioral changes come from a desire to connect. Raun posted an online reminder of the difference between celebration and praise that is a helpful reminder for me:

"Praise = the use of an approving statement as a 'reinforcer' to get a child on the autism spectrum to do what you want.

Celebration = the outward expression of a genuine feeling of delight and gratitude for what your child just did."

I love this. I think almost all of what Raun writes about how to relate to children on the autism spectrum can be applied to relating to all kids, maybe all people, and all challenges.

This weekend my mom and step-father were visiting. We had a lovely time. When we went for walks, the girls almost always refused to hold my hand and insisted upon holding the hand of Mom-Mom or Pop-Pop. Amy and Mom-Mom went fishing in the back yard many times at Amy's suggestion, using sticks as fishing poles. Pop-Pop brought and assembled a Thomas the Tank Engine electronic racing toy. I feel proud of the collective clear thinking and team work on how to interact around and through an electronic toy that Sarah adores. Mom-Mom and Pop-Pop introduced the idea of the trains needing to rest and that Sarah could count to a certain number while waiting. We elaborated into singing songs. At one point I said the trains needed a lullaby. Thank goodness for my delay in starting singing. Sarah started singing "go to sleep my little Sarah..." which is a song Carl used to sing to her when she was veeeeery little. He also sang it to Amy some when she was a baby. But I think it has been at least a year if not two or more since Sarah heard that song. Other train interruptions included needing to give the trains pretend drinks of water and Station Master Wellington needing to write numbers on a train schedule. When it was dinner we had to make our way to the dining car, wobbling some along the way and nearly losing our balance! A hilarious moment occurred after dinner last night because the drone of the train motor was solidly going and then Carl called to Sarah that dessert was ready. The motor stopped instantly. 

Yesterday we went to the spring carnival run by CMU students. Amy really wanted to go on a spinning dinosaur ride (akin to spinning tea-cup rides), until it started and then she wanted to get off. She made it through though. Then she wanted to go down a very big slide that was so big I made Carl be the one to take her. She was rather scared and shocked at the end, but she made it. Sarah loved riding the tractor ride and the ferris wheel, doing each twice. Part of the carnival involves thematic booths made by students. Amy's favorite replicated the play area at a St. Jude's hospital. It was filled with dolls and small toys. Amy and I went there 3 times and spent many minutes hanging out. Whoever thought to create a home away from home for small kids at a carnival was a genius.

On the drive home from the carnival, Carl discovered that Sarah can open the bottom buckle of the carseat that is in his car. She can also almost unlock our back screen door lock, which has been my back-up because she can open the regular door lock so easily. And she can open and close the new bubble bottle easily. Each step of independence is so awesome and it keeps us on our toes.

Apparently, Sarah can play a regular game of Candyland! I had no idea. Whenever I have tried it has felt like I was forcing something, but Sonia informed me that she and Sarah have played a few rounds of the game. 

As you know, one of my struggles is in how I respond to yelling, screaming children. This past week I have felt a true internal shift in how at ease I can remain lots of the time. Not 100% but it is notably different, at least on the inside. The thought that actually seems most helpful for me when Sarah starts screaming is that I will not negotiate with terrorists. I know, perhaps it is an extreme and ridiculous thought. But what it does is remind me to just wait and that there is no point in trying to speak or reason through the screaming. And it helps me not take it personally so the calm waiting can be more true calm instead of my trying to seem calm but not really feeling that way.

I hope you all are having lovely weekends and that something is the best ever.

April 6

Sarah has been out riding her new bike and she loves it! At first she had some trouble with the pedals but that is coming along beautifully. I am grateful for training wheels so it is easy for her to go at her own pace with pedaling and pausing. Accompanying her, I often feel teary, remembering the days when I despaired of her ever learning to crawl. 

We had one moment when Amy and Sarah and I were all singing a song. Together! At the exact same time! Three voices singing verses from Pete the Cat: The Wheels on the Bus. This was a first and we sounded fabulous! 

Sarah was a sneaky sneak yesterday when it came to food. I made almond flour crackers for the first time and put them in a container on the counter after giving the girls a few to sample. Carl and I were then talking about the plan for the day and we realized it was awfully quiet. We found Sarah upstairs in the Sarah-Rise room with the container of crackers, happily munching away. Later in the day when I was out, Carl was getting Amy ready and then wondered where Sarah was. She was sitting at the dining room table, having helped herself to a gigantic piece of chocolate bread (the last 1/3 of a mini-loaf). I realize that now I need to put non-refrigerated food up much higher or in cabinets. I do love her sneaky self-sufficiency.

I had some wonderful times in the SR room, but I want to share some beautiful experiences from a few team members.

From G...

"Such a cool day. I tossed Sarah's water bottle/cup to her and it spun around and spilled a bit. She found this hilarious. She then took the silliness to the next level...pretending to drink from her eyes, her ears, her nose, etc. She would make the motion, look at me for a reaction, then share in the laughter when I reacted. She was, in essence, taking the role of a stand-up comic...and succeeding in both being funny and really connecting with me to make sure her "set" was hooked-in to my mood."

From Michelle...

"We were doing numbers, and I saw she was doing them a lot better than I had previously seen so I praised her a lot. She did a 9, looked at me, and goes, "how is this 9?" and I told her it was good, and she looked at me with the most genuine face and goes "it's beautiful!" It made me melt....She was buttoning/unbuttoning her shirt. I took out the practice buttons and was doing them. She was getting frustrated, but then took the practice buttons, and after a few went back to her shirt and was able to do it. Each time she got stuck she went back to the other bigger buttons to practice."

From Carl...

"Today we did a "project" with the SnapCircuit electronics kit. Sarah seemed much more engaged with it than last time and two things stood out. 1. When building, we would count together the number of bumps to see what size wire was needed and then Sarah would find the wire piece of that size and put it in place by herself.

2. When we had a working circuit, I would talk about how the electricity moved through the loop and then I would remove a wire. Sarah would then try pressing her button and it wouldn't work. It was broken! Oh no! Then I would help Sarah fix it and she got very excited that it worked again. I felt like she was starting to "get" electricity and circuits a little bit."

Raun Kaufman, the son for whom the Son-Rise Program was developed, has written a book, Autism Breakthrough. I have just started reading it and I love it already. What I especially appreciate is his comment about false hope, "I continue to be befuddled as to what they think hope will do that is so harmful to our children. Who decided that a life sentence was better than an open heart and an outstretched hand? The bottom line is this: hope leads to action. Without action, none of our children can be helped. I hear people complaining about false hope, but I never hear anyone worrying about false pessimism. There is broad agreement that we don't want anyone promising a particular outcome for a particular child ahead of time. Why, then, do we abide people making promises about what a child will never do?" I think this point can apply about hope v. pessimism in any situation. I feel quite blessed that no one aside from my own fear has ever been pessimistic about Sarah's possibilities.