July 26

Last Sunday we went to Idlewild for the first time. If you have never been and if you live anywhere near Pittsburgh, I highly recommend going. It is the most wonderful and pleasant amusement park! There are so many trees that even on a very hot day it is still pleasant. They have tons of rides just for little kids, including one with small cars on a track that the girls could “drive.” You can ride on Mr. Roger’s trolley into the land of make believe! We went with some friends and their daughter and overall it was one of the best days I have had in a long time. The whole day was just amazing. So… when Sarah asked to go back on Tuesday I decided to get season passes and we went again, even though our timing was limited. It was not quite the same perfect day. It was still good, but quite different. Sarah didn’t want to go on any rides beyond the carousel, which we had done twice at the beginning. Amy attempted two rides by herself that she had done with Sarah and their shared friend on Sunday. This time Amy was by herself on the motorcycle ride and looked so sad I could barely stand it. Then Amy and I waited in line for her to ride in a car. She wanted to go with another child, but the girl in line behind us wanted to go by herself and no other kids were solo. When it was Amy’s turn she started to cry before getting in the car. The girl behind her changed her mind and said she would go too. By this time it was too late for Amy and she started sobbing so we left. Then we left the park. Amy fell asleep before we exited the parking lot. I still love Idlewild and we will certainly go again, but Tuesday was a reminder that it may not always be the most perfect experience ever.

We wanted to go back to Idlewild yesterday but Sarah’s potty needs prevented such plans. I don’t know if she had a bug or if it was just the hiccup in regularity that we occasionally experience. We used to experience such troubles frequently, so it is good to notice that we hardly ever have problems these days, but yesterday was still quite challenging. I feel like most of my past couple days of interactions with Sarah involved me helping her get clean while she screamed about it. In the middle of last night it happened again. Carl was as kind and calm as he usually is in such situations. I was as mad and unkind as I usually am in such situations. I was chagrinned and humbled. Why is it so hard for me to be patient and kind sometimes? I felt like a monster as I lay in bed afterwards wondering what my good points are. In attempting to understand my behavior, I realized that in that moment I had been rough as I moved Sarah towards the towel because I was feeling hate. Queue stunned silence. How can I feel that toward my own child? Where did the overpowering love go? As rotten as the thought was, I could actually breathe more easily after I verbalized it. Then Sarah came toward our room and Carl met her in the hall. She said she wanted to sleep with mom. I felt startled that she would still want anything to do with me and that helped some tears flow. Writing this all now I see that of course I don’t really hate her and didn’t really last night either, but I certainly was hating the experience of Sarah’s yelling. Once again, allowing myself to notice the feeling that I so didn’t want to notice helps me let go and move on.

I was feeling very much like a Son-Rise failure, having run a good program for over 3 1/2 years, I now feel like I am stuck in the mud. Either I need to retire and let other people do almost all daily interactions with Sarah or I need to get back in the SR room for 30 min a day. Lately I haven’t wanted to go in the room, or Amy always wants to be there too and that is ok but different or we are going on field trips or to the pool or just hanging out around the house. Just a few days ago I felt like things were going well and easily. Maybe it is the potty issue that derailed that good feeling. I theoretically know it is just a temporary fluke, but I felt like a failure regarding feeding Sarah right. Instead of saying affirmations, I was back to feeling awful and when I did say affirmations I felt like they were a joke because clearly the evidence was against my doing a good job. Well, onward and upward. Today I will endeavor to name for myself how I am feeling, to let it be, and to get in the SR room for 30 minutes. I feel rather sick thinking about doing so. I don’t want to force it, but I think I will feel better and maybe our relationship can improve if we have that time together. I also feel quite naked writing all of this, as if all of my volunteers will be aghast. I know many of you lovely readers don’t enjoy reading about when I am hard on myself. I know. But it is how it is right now and I so much want to be honest about this whole process, this whole journey. It’s not a Son-Rise journey. It is simply my journey through being me and having my Sarah with special needs. There are very many good moments even in a week that ends feeling hard. There are so many blessings that have come from Sarah being herself as she is. I know that. And still. Sometimes I just wish some parts of this could feel easier. When I was in high school I was very attached to the Terry Brooks’ Shannara series. While they do borrow too heavily from Tolkien, one part that I always valued was that for certain magic to work, the individual had to look at and accept all of their deepest selves, unfavorable moments and all. They always did it. They always survived. So, I’m hoping that somehow through writing and sharing, I can access my own magic a bit more cleanly, clearly, and powerfully. And hopefully Sarah and I can strengthen our loving interactions and let go of the times we clash.

On the amazing side of things, Sarah’s progress with reading continues. Most word cards have 4 words on them and she can often read at least part of the newest cards the first time she sees them, making educated guesses about the words she doesn’t know. This morning she guessed “street” when the word was “stairs.” I love seeing her eyes move across the words. We have also changed the math cards to having the first part of a simple equation on the front of the card and the answer is on the back. We don’t turn the card over until she says an answer. If she doesn’t quite get it then we set up our fingers for her to count. 

Also on the plus side, ballet on Tuesday was probably the best ballet class yet. Sarah was the most focused she has been. She still didn’t want to do everything. She still left the room early to watch traffic. Amy still came out for a cuddle visit with me. But, still, it felt like progress. There was no screaming when we left. And when I ran into some friends right after class, the girls stayed with me quietly, easily, and patiently while I talked with my friends. 

On Wednesday we had a small birthday party for one of our volunteers and that felt lovely and fun - and the cake was delicious. I put a layer of home made raspberry jam in between the cake layers with the chocolate frosting. Oh my goodness! We polished the whole thing off within a matter of days. Yesterday I tried varying the recipe again, this time to include carrots and beets with the customary zucchini. I ran out of raspberry jam because I used that in place of some of the honey in the cake, so the frosting is chocolate mousse (made with avocados). I’ve used that mousse as frosting before and it has been a better combination with the normal cake with just zucchini. This cake is good but not as amazing as usual. At least it gives us all three kinds of veggies. 

I have been marveling at how awesome it is that Sarah often gets distracted from word cards or other tasks because she is noticing whatever Amy is doing and wanting to do it too. Recently she even did a little coloring with an attempt at embodying Amy’s focus, speed, determination, and thoroughness. 

Anyway, thank you as always for bearing witness and bearing with me. I wish you all love, gentleness, and a bit of magic even when the going gets tough. 

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.