July 18

Sarah has been making amazing progress in the pool. She now loves walking all around in the area where the water just comes to her chin. She lets us pick her up, she lets me sometimes encourage her legs to be behind her. She is skilled at spitting out water accidentally ingested. Amy continues with her love of water, though she is doing less supported swimming than before and more water play on her own. They both love holding onto the rope marking the lap lane and using that to support themselves. I figure all of this is good for being comfortable in the water and the more they explore then the more they will understand how to move their bodies in water to do what they want. I have been enjoying getting to swim some laps too.

This week we went on the Just Ducky duck bus tour of Pittsburgh. When the bus was in the water, kids were allowed to take turns sitting at the wheel. Amy wasn’t interested at all. Sarah took to it like a duck to water. Most of the kids just kept their hands pretty still on the wheel. Sarah was steering for real and I think she surprised the driver a bit because he chuckled as he straightened our course. Sarah didn’t want her turn to end, but handled that pretty well considering the volume of protest she can sometimes attain.

For ballet class, I spoke with the teacher before class started about staying a bit at the end to help Sarah transition. The teacher was very supportive of this idea. So, of course, there was no screaming or running away and Sarah didn’t even quite finish the class. She was still quite distracted at moments throughout class and didn’t want to do some of the activities. For the last activity that she didn’t want to do, I went in and said she could do the leaping over the pond or she could come sit outside of the room with me. She opted to come with me and enjoyed watching traffic. Ballet class helps me access such feelings of pride, frustration, despair, anger, and hopelessness. It is actually refreshing to notice that that used to be how I felt a lot of the time and now I hardly ever feel that whole packet of feelings.  I figure that this is like when I palpate a muscle and am glad to find sore spots so I know where to focus. This gives me good practice at affirming, reaffirming, and reaching again for loving Sarah regardless of her level of participation, and being happy and at ease regardless of her participation. The teacher is lovely and still seems happy to have us there so that is awesome and isn’t to be taken for granted. 

When I showed Sarah a word card that had “through” as part of the phrase that was new for the day, she said, “enough.” I am so thrilled that she seems to be learning some phonic rules even when we are focusing so strongly on sight word memorization and even if English is such a crazy language that “ough” has different sounds depending on the word. 

I still had many rough emotional moments throughout the week, but overall I felt like I was in an upswing. Part of this was due to a helpful suggestion from a friend following my last update. She suggested that I allow myself to feel the heartbreak. As soon as I stopped resisting that there could be heartbreak left within me, then it eased and I felt better. I so much wanted to be done with heartbreak that then I was keeping myself stuck feeling it instead of moving through it. 

Yesterday I was having a bit of a struggly moment again and I experimented with telling myself in my head, “I’m doing a good job.” I was rather surprised by how good this felt to my being, as if I was a wilting plant receiving water. Sometimes I can feel silly saying such affirmations, but they can be so helpful in counteracting the silent shouting voice of criticism in my head. That inward shouting can be so constant that I don’t notice it is happening and I only notice I am feeling crappy, believing my doubts to be true instead of just mean things I am saying to myself. So, my goal for this week is to say nice things to myself, even if it just to remind myself occasionally that I am doing a good job. This is all subjective, but I have a sneaking suspicion that telling myself I am doing well will actually better help me attain my goals. Darn it all! :)

July 12

Lately I have been feeling like a hypocrite. I have my team of amazing volunteers who come to my house to be loving and focused with Sarah, but I, myself, have been having a hard time feeling loving towards her. We have small nice moments, but my overall impression is of frustration, sternness, and yelling at each other. I know that we have these phases and that this too will shift, but I feel impatient for it to change and frustrated with myself for not being able to change things on my end sooner. I think sometimes it is not just Sarah’s whining and yelling that I am mad at. I think I am also mad at her for her condition. For her delay. For her challenges. So instead of feeling compassion when she has a hard time with transitions, I feel anger. 

I remind myself that the only heartbreak in Sarah having special needs is if I don’t do things with my life that I want to do, such as reading fun books or going to Zumba, or going out to eat with friends. I know I have reaped many blessings from her being who and how she is. One of those blessings seems to be finding my wall of resistance and anger and continuing to explore it. But I want to already be at the miracle end of this process where everyone wants to hear about our amazing story of thriving so much that if you met Sarah without knowing her past you would never guess at it. Are we there yet??

We had an absolutely wonderful team meeting this morning. We talked about how to help practice some aspects of ballet class in the SR room to help Sarah when she gets to the actual ballet class. I know I was super impressed with the first ballet class. For the second class I think I raised my expectations exponentially and felt frustrated with Sarah’s door distraction and with her running away screaming when class was over. In our meeting this morning we also talked about how I could ask the teacher if we have some room to stay a little later instead of trying to leave with everyone else. Maybe just waiting a few minutes would mean Sarah would leave more calmly or I would at least feel less self-conscious if she screamed.

In general, I want sit with Carl and revisit some of our rules to see if there are some we can let go of or relax so that Sarah doesn’t get so many “no” responses during the day and maybe I can more easily stay looser in myself. Some things may be a compulsion for Sarah simply because of the restrictions. She always wants to go into the basement and she especially wanted to go there when we recently had company. We let her go down a little bit but it was always a struggle to get her back upstairs. After the company left I decided to just let the girls play in the basement for a while without an end point. They both then came out of the basement on their own. There is a bit of a mess of toys in one area, which is not ideal, but maybe it is acceptable in exchange for more peace.

My friend E. and her family were our visitors and it was really lovely having them here. E. and her sister G. and I have been friends since I was 4 (E was 3 and G was 5). At one point, Amy, Sarah, and one of E’s daughters were playing together on my bed. I felt like I was seeing the past selves of E, G, and I. I feel so thankful for that friendship not just for the friendship but also for the model it provided of two sisters being friends with one other kid. I feel totally comfortable with the idea that Amy and Sarah could share a friend and that maybe they will have trio friendships just as I did. I’m sure trio best friends are common, but I’m not sure how often two of those three are sisters. I would guess that is less common.

In other news, Sarah is asking “where” questions with more fluidity and ease. One morning she asked me, “Where’s Dad?” I responded that he was downstairs. She said, “bye” and headed downstairs. That may seem like a very typical moment but it is one of those huge deals because it hasn’t really happened before.

Despite my frequent state of blah-frustrated-grr-dom, I have still been aware of how amazing Sarah’s language and reading progress continue to be. Even if I am running a very imperfect program and am a very imperfect mom, we have still made amazing progress since we started SR 3 1/2 years ago. Sarah can talk. She can look at people when talking to them or listening to them. She plays imaginatively. She is potty trained. She eats healthily, even if we are still working towards more balance. She is learning to read and write. She is maybe learning some math. So even if we do nothing more, we have already come an amazing distance. 

July 4

We generally have a rule that we can’t have two weekends in a row with either hosting company or being out of town. Sometimes there are important events that mean going against this rule and then I am reminded of why we have the rule (it just becomes too much). Two weekends ago I was away for a memorial service/family reunion and then last weekend we were in MN for Carl’s high school reunion. We got to see lots of family and it went as well as possible in terms of food because my mother-in-law baked Sarah’s chocolate cupcakes and filled a cooler for me with other things Sarah could eat. Since we flew I couldn’t bring supplies like I normally would, so it was great to have everything ready when we arrived. My in-laws also provided excellent babysitting and assistance overall. And, still, I found it stressful. It seems that on any trip I end up feeling much tighter about Sarah and her behavior and I say no all the time. The great thing about this trip was that I accepted that stressed/grumpy state a little more than I sometimes do. Instead of wondering how I suddenly became a failure of a mother, I was able to say, “oh, this is what usually happens with trips. It is going to be ok.” It was nice to get back to some normal routines at home. On Thursday it was just the girls and I for almost the entire day and it went surprisingly well. And… then I felt done. I am still feeling done. I am feeling a bit burned out on parenting and then feeling bad that I feel burned out because I still have so much help overall and I have had breaks. I guess the first step is to not fight the burn out. 

Yesterday we went to a park that had a big ferris wheel. We stood in line for a long time. We rode the ferris wheel. In Carl’s words, “The girls and I had a great time and Jenny was there too.” Yes. I was kind of stressed and wanting to be done for most of the time. It was hot and crowded and there were cars on display for part of the festival so Sarah wanted to be in the cars and didn’t take kindly to leaving. The ferris wheel itself was both better and worse than I expected. The height bothered me less than expected but Sarah wanting to stand up (we didn’t let her) had me very anxious for the last, painstakingly slow revolution.  Yesterday contributed a bit to the burn out, of feeling like I just want a break when I’m not on call in any way but can be at home and deal with piles of stuff or just read my book all day. I would like a day where half of what I say isn’t met with whining. Once upon a time, there was some version of me that was totally ok with whining, crying, screaming, and general upset. I don’t know where that version of me is but I am trying to find her. Again, perhaps the first step is to be ok with my disgruntlement.

On the awesome side of things… on the way home from MN, Sarah lost her first tooth! Some of her word cards now have 4 words. She sometimes reads new cards without having seen them before. We went to a playground and Sarah went down the firefighter pole several times with Sonia helping just a little. Sarah has never wanted to try that before. At the pool, both girls continue to try new things each time we go.

To end on something quite wonderful, one of our volunteers, M., sent me this lovely message:

I wanted to thank you so much for the opportunity to be a member of Sarah's son rise team! I was reflecting on my time with her and realized that while I was trying to get across ideas and lessons to her, she was teaching me at the same time. She taught me the importance of patience, simplicity, compassion and connection.  Patience helps me every day, especially through academics, and will continue to help me as I move through my challenging classes in the fall. My time with Sarah has taught me that I can conquer what seems to be the impossible. I live a complicated life, haha, with all of my jobs, extracurricular activities, and busy family. Sarah taught me that simplicity is necessary. When things get stressful it's okay to take a step back and give my brain time to relax with no real obligations or responsibilities. Sarah's compassion and enthusiasm has made me realize that even the smallest of accomplishments matter and make a difference in the long run. When I go through my day with optimism and enthusiasm, I fall asleep at the end of the day happier than I would have been otherwise. With a smile on my face and celebrating my little accomplishments and those of others I find so much joy and fulfillment out of day to day life. And finally I cherish the value of connection that Sarah has taught to me. I, as do most people, tend to sometimes withdraw myself and don't always engage in connecting with people. Sarah showed me the reward of connection and how special these moments are. I thank you so much for all that you have done for me and all that I've experienced with Sarah! I cannot wait to spend more time with her and I wish you all the best while I'm away and at school! I also cannot wait to see what new challenges she faces because her learning curve is exponential! -M.

June 28

The girls had their first ballet class on Tuesday and it went beautifully. It is a small class with only 5 or 6 students. Sometimes when I think about our efforts with Sarah I picture being up to bat and going for a home run. With the ballet class, it felt like a home run. Sarah was focused for almost all of the class. I only had to block one of the doors for the last 15 minutes. Sarah also ran away into the room when it was time to leave and also tried leaving out the main door without me, so those tiny moments show us the path forward for our goals. But, I digress. Sarah did an amazing job in class!! Both girls did. Sarah easily participated, listened to the teacher with minimal prompting, engaged in pretend play, answered questions, and repeated ballet terms flawlessly when asked to do so. Wow!! Holy moly!!

We went blueberry picking for a field trip and had a wonderful time. Blueberry picking is one of my favorite things to do in this world.

We went to the pool again and both girls practiced closing their eyes and mouth at the same time and then also getting their faces a bit wet. Sarah even tried to blow bubbles. Awesome! My main goal for our pool time is to have the girls enjoy being in the water and feel safe in it. The more they have that then the more we can refine the details of swimming.

Sometimes Sarah reads the new word card (with three words) all by herself before we even read it to her once. When that happens I can think I am making the cards too easy! And then I think that is precisely perfect and how all of this should work so that she moves easily into reading multiple words in a row.

Earlier in the week I saw one of our past volunteers, and Sarah kept asking for her to come play. Sh. and I scheduled time for Friday afternoon. When Sh. arrived, Sarah was so delighted and excited. She was also quite socially sparkly and graceful. She greeted Sh. by name, with eye contact and a smile and going up to her. G. had just finished his session and was putting on his shoes. Sarah then paused with her greeting Sh. and went over to say something to G. about his leaving and what he was going to do next. She was so present and connected my socks went flying.

I had an SR session where Sarah wanted to play Hello Kitty bingo by herself for many minutes. I played Hello Kitty Uno by myself for a couple games where I played both hands. I reminded myself that joining is just as important as play that feels more connected. After many minutes, Sarah came over to me and we played a long game of Uno with the same level of guidance that I give to Amy when she is learning a game. We didn’t finish the game because it seemed like it would never end. This was such an excellent reminder that joining works and that I don’t have to force connection. I can just be there and offer the opportunity.

Friday morning I played a song on our music system that I hadn’t played in ages. Instead of resisting it in any way, Sarah seemed ok with it. Then later it moved into a whole playlist that we used to listen to in the past. The playlist includes lots of action songs. Both girls independently did many of the actions! Sarah was running and galloping around with clear delight. Awesome!!

Sarah also got on an escalator easily by herself as if she had done so a million times before.

So many moments this week have affirmed that what we have been doing is bearing fruit. Not that this is a surprise, but it is nice to notice it. Go team!!

June 21

Sarah and Amy and I played many rounds of Hello Kitty Bingo while singing the song I made up to the tune of "Raw Hide."  It goes like this:

Rollin' rollin' rollin' 
Keep those dice rollin' 
Hello Kitty!

Daniel, Fifi, Squirrel
Gum ball and watering can
Hello Kitty

----

This started as just a moment of my singing to get Sarah to roll during an SR session that was just the two of us. I could hear that Amy was outside the door. The next time I was in the SR room Amy was with us too and wanted me to sing. Eventually both girls wanted to sing too but without me so I said that each person could sing when it was their turn to roll. Sarah tried including the second verse. Amy really got the dramatic flair as she said the first "Hello Kitty." Sarah requested that we play the game with Amy. This is huge for her to not only request a game that is then played all the way through normally but also to want Amy as part of it and to attend to a game with two other people. 

We went to the pool with Mom-Mom and had a similar experience as our last pool trip. Amy swam very assisted laps and Sarah stayed on the steps. Sarah did a lot of floating her legs in front of and behind herself while holding on to the stair railing. 

We had a short visit with Mom-Mom and Pop-Pop at our house, after which I left with my parents to go to a family reunion. Carl stayed with the girls, celebrating Father's Day with super duper all dad time. The family reunion was in celebration of the life of my great aunt who passed away a few months ago. It is wonderful to reconnect with family members I haven't seen for years. This whole life and death and time business never ceases to amaze me. 

Happy Father's Day to all of you who are fathers or who support someone in that way. I am so blessed to have my wonderful and supporting father, step-father, father-in-law, and father for my girls as part of my life. I cannot imagine a better parenting partner for me than Carl. No matter how long his work day, he always has loving energy for the girls. I am also blessed to have the love and support of so many people overall. Thank you to all of you who are part of our village. 

June 14

I didn’t have quite the easily blissful, totally 100% comfortable with upset time that I had the previous two weeks, but overall the week went well. We went to the pool at my office and I supported Amy as she kicked and moved her arms so she swam little laps with my help. Sarah bravely went down a step farther than she did when she first entered the pool. I appreciate Sonia’s celebration of Sarah’s achievement because it helped me notice it and celebrate it too. The daring and bravery of both girls is wonderful!

We helped paint a mural at the Three Rivers Arts Festival (for about 5 minutes, hand-over-hand). We walked a lot in the hot sun. The girls got to touch a flag that was at their height (a dream come true for Sarah). We ate snow-flavored snow cones (meaning no flavor, just ice). We got very hot and tired. On a different day we went to a playground that has a splash park, so there are different things that spray and shoot water in different ways. The girls loved it.

More and more of Sarah’s word cards have three words. 

I made new math cards recently that have equations written out in dots on one side and numerals on the other. Sarah prefers to look at the numerals and say each part of the equation herself. I now only have one math pack and it has three equation cards. Each night I retire the oldest card and add a new card.

Yesterday we had a pipe leak in our basement. The best part of this whole situation is that we discovered it in the morning (instead of 12 hours later) and that it wasn’t too huge of a problem to turn off the water to the whole house for a few hours and that Carl was able to fix the problem. And I don’t think anything important got damaged. 

I made lasagne with rice noodles and homemade cashew-cheese. It is so delicious I can hardly believe it. If I didn’t know it wasn’t cow-milk cheese I wouldn’t guess it.

Love to all of you.

June 7

I think I am finally succeeding in becoming more like my mother. I have so wanted to be the kind of mother she was/is to me, having space and clear attention for my upsets, without needing to shorten the duration of my feelings. Last week I wrote about feeling more truly comfortable when my girls are upset. The big miracle from this week is that I actually kept that beyond my writing about it. Often after I write about something then I let it go, assuming it is an integrated part of me when in fact it is a new and tentative part that requires practice. So, I continue to remind myself throughout each day that it is truly ok if the girls get upset. This is making such a huge difference to my experience. I think it is also shortening the length of upsets, at least with some things such as turning off the tv. I am at peace for much more of my days than I used to be. I am not as scared of my children. I’m not sure I even realized that I was scared of them, but that is really what it was. I was scared of the yelling so I would brace for it or strategize to avoid it. I still strategize and brace some but overall I feel like I have more freedom and ease.

In Alexander Technique terms, we talk about the Means Whereby. That means to let go of trying to be at your goal already and to focus on the means whereby you want to reach your goal. This feels very much like what I have been experiencing this past week. I am noticing lots of tiny moments of increased flexibility on Sarah’s part and the means whereby this is happening seems to be my letting go of needing her to be anything other than exactly where she is. For real. It is sometimes much easier to talk the talk than to really deeply walk it. Not to shortchange my journey so far, but it is always exciting when I think I am understanding something in a new, deeper way that I didn’t even previously know was possible. 

For my latest comfort with upsets, I am very thankful to another Son-Rise mom. I don’t know who it was. It was in a facebook discussion about someone else’s child and their violent behaviors. This other mom said that for her, when she got truly comfortable with violent upset in her own child then it went away after 3 days. For some reason that comment reached me in a way that other reading and instruction hadn’t and I realized that I still wasn’t fundamentally comfortable and that I wanted to be and could practice choosing to be truly comfortable. And here we are. Now, the challenge for this upcoming week is to keep all of this clear thinking and comfort after writing about it today!

Back to Sarah’s flexbility…She has been allowing me to play different music a little bit more often and more easily. After a session in the SR room when I kept playfully asking if I could sing a song from a songbook we have in there, and she kept saying no, the next day I asked again and she said yes! Yesterday morning when she asked to watch something and I said first we were going to do other things, she didn’t get upset at all. She even played a card game with Amy and me. Sonia requested and was granted permission (by Sarah) to try two different hairstyles for Sarah. This is huge.

Sarah had a very hard time when I went swimming at the pool at my office by myself and then came home but wasn’t going to take the girls. I will take them next week if timing and weather cooperate. She had lots of feelings and tears and I felt comfortable just sitting with her and not trying to fix it or shorten it. I felt like she moved through that moment more fully and then was more clear afterward. It may have helped that I reminded her (and myself) about when I was sad on Wednesday with a similar situation. I had been all dressed and ready to go to Zumba and then the babysitter didn’t show up. Apparently we had had a miscommunication. I felt very sad and allowed all of my tears to flow. Sarah sat with me and was interested. In the past when my Zumba plans fell through I would often take that into anger, and often that meant yelling at the girls. I much preferred feeling the sadness, letting it go, and then enjoying my time with the girls. 

We had an awesome field trip on Tuesday. We went to the Trolley Museum, had a picnic, rode the carousel, and played with a gigantic beach ball. The beach ball was a complete surprise and was so much fun for all of us. 

I have been doing more SR time with Amy in the room too. I feel like this is working and expands the play scenarios in a more truly kid-like fashion than I necessarily achieve on my own. It is so much about my state of mind and focus and less about the actual location. I have also been doing more sessions when the moment seems right without waiting to assemble snacks, water, and whatever else I usually do to get ready.

I send you all love and giant unexpected beach balls of delight.