September 13

Twenty years ago, almost exactly, I decided to sign up for French class in my freshman year of college. I thought it would improve me as a person and make my life better. I was so right! It was in that class that Carl and I met. The reason I didn’t write anything last weekend is that Carl and I were in France, celebrating twenty years of knowing each other. Just the two of us. Sonia made sure everything at home with the girls went smoothly, with the help of Grandma and Grandpa, our sitters, and our volunteers. We are immensely grateful! We had an amazing time. We stayed with family and friends and also got to see some friends who came over from Germany for a day. We walked all over Paris and Versailles. At Versailles we rented a row boat and Carl easily rowed us the length of the human-made lake. I attempted to row and after many garbled moments I did get some smooth movement. We spent some time in the beautiful countryside of France (Cercier, Annecy, Chamonix). We stayed with one of my dearest friends, whom I have known since I was 4. We ate amazingly delicious and decadent food. I bravely tried many foods that I hadn’t before or didn’t think that I liked (snails, frog legs, frois gras, raw fish pickled in vinegar, and duck with olives). Carl bravely went paragliding. We practiced speaking our limited French. Now we are enjoying a calm weekend at home and recovering from jet lag. 

It was absolutely wonderful arriving at home and having both girls climb all over me while saying, “Mom’s home!” They seem to have grown up more than just the 9 days we were away could warrant. They both seem more verbal. When I gave Sarah a writing worksheet to do and then put it away, she came to me later and said, “Where is the E worksheet?” That moment explains any socks you saw flying past you. 

Amy’s school started as did her new ballet class. She is at a different place for ballet because I wanted a class she could attend when Sarah was in kindergarten. Gymnastics started a couple weeks ago for both girls. 

I hope all of you had a wonderful couple of weeks.

August 30

Sarah started kindergarten! She loves it. She doesn’t want to leave when I pick her up in the afternoon. I love her situation so much that my heart is overflowing. To recap, the preschool assistant from last year is now the kindergarten teacher and there are 3 students total. It is half day. The other two students are lovely girls who were in Sarah’s class last year. I love seeing the other families when we do drop-off and pick-up. Everyone is so friendly and wonderful. The whole school is loving and welcoming. I really couldn’t have designed a more perfect situation. 

There are arrows along the hallway that have the words “kindergarten” or “Sarah” or the names of the other students. When Sarah walks down the hall she likes to touch the arrows and read them. Awesome!

Sarah lost yet another tooth! We have no idea where it is.

I found a cashew cream cheese that I can buy that is very similar to what I make. I put some on the green crackers Sarah likes and she said, “Sarah-friendly cream cheese on a cracker bagel.” 

Yesterday we went to an outdoor festival that had a bouncy house and a bouncy obstacle course. The girls have been loving watching American Ninja Warrior and pretending to do courses around the house (scaling window ledges). Amy was too young to do the bouncy obstacle course but Sarah did it and did an amazing job. The way it is set up there is no way for a grown-up to help except verbally so she did the whole thing fully by herself.

On the way home from the festival, Carl had something in his throat so he cleared his throat and spat. Sarah then started imitating him. It was hilarious. It could also be useful because there have been times when we can tell she just has too much mucous in her throat and if she could only clear her throat and spit then maybe she wouldn’t need to throw up.

I am taking next weekend off in terms of writing an update so my next update will be in two weeks. I hope you all have a wonderful couple of weeks.

August 23

We have just arrived home after a truly wonderful night of camping and an afternoon at a lake beach. The weather was perfect, some friends had a campsite nearby so we got to see them a few times, we arrived with plenty of time for a relaxed time of setting up and dinner despite the traffic delays that turned a 1 hour drive into 3 hours, we had a relaxed morning without needing to watch the time at all, and the girls are getting ever older and more independent. This latter fact was most notable regarding the bathrooms. Usually in public restrooms I find the largest stall and the girls and I all go in together and take turns. At the campground we each used our own stall at the same time. Whoa. The only thing they couldn’t do on their own was turn on the water because you had to press down fairly hard on the faucet control. Also, Carl at one point took Sarah to use the bathroom and so she used the women’s room entirely by herself. Carl then helped her wash her hands in the outdoor sink. This morning, Amy went back from the bathroom to our campsite all by herself while I did the breakfast dishes. When did these kids become so grown up?

At the beach today we were able to sit back in the shade some of the time that the girls played in the water. At one point Sarah got herself included in a frisbee game (in the water) with another family that we had never met before. How super amazing!!! 

Earlier in the week, Carl was getting the girls ready for bed. While he was helping Amy with something, Sarah came in to the bedroom holding her toothbrush and paste, looked at Carl and said, “Open it please.” The amazingness of this is three-fold. The fact that Sarah initiated teeth brushing instead of being told is amazing. The fact that she went to find Carl and ask for help instead of just whining and yelling in the bathroom is amazing. The fact that she looked at him while saying a clear and full request is amazing.

Sarah is now missing her two front teeth (on the top). I think she looks like a jack-o-latern. 

There are so many times that I feel frustrated by Sarah’s isms regarding tent zippers, car doors, regular doors, or other things where she then seems unreachable or inflexible, but these moments of increasing ability and independence help me appreciate that we are still moving forward zippers, doors, and all. Also, speaking of joining, I continue to relearn how valuable it is. For those who may not remember, isming is when Sarah is exclusive or semi-exclusive within a repetitive action (or repetitive in a story with little variation or flexibility). To join an ism means that I do the same thing she is doing without needing her to change in any way, just being with her in such a way as to show her I like the action too or the story too. The times recently when I have remembered to do this or observed volunteers doing this, it has been astonishing how effective it still is as a means of connecting with Sarah and after we have that connection, she is more open to whatever I say or do. Outside of the SR room it isn’t always feasible to join or I often don’t want to because I feel I don’t have the time or it is an action we don’t want her doing in any case. It feels so much better internally when I can and do join and we move forward from there.

On Wednesday I had a time of out-yelling the girls. This means we were all upset and growly but I was the loudest. As you know, this is not my proudest achievement. This time, though, I was able to let myself notice and acknowledge that part of my yelling may actually happen because it feels good. EGAD! WHAT?! Yes, indeed. The anger doesn’t feel good, but the outlet of yelling feels good and powerful. I still would like to find alternatives that work, but noticing the good feeling actually helped me move past the moment much more quickly and I also wonder if Sarah feels some of that good power and release when she yells. Berating myself a ton hasn’t really worked to change things so I’m hoping that this new angle will help me have new approaches and thoughts. It at least doesn’t pull my energy down for a day as berating sometimes does. 

Anyway, I hope you all have had wonderful weekends.

August 16

Sarah and I had a great session early in the week. At one point she talked about eating ice cream. I pretended she was a giant ice cream cone and pretended to lick her. She said, “Ah! too much lick!” in a pretend complaining voice. It was adorable. We also had a fun time with her pretending to go in and out doors to a bank while I sang a song about it to the tune of Patsy Cline’s “Walkin’ After Midnight.” Sometimes she doesn’t want me to sing anything at all so it was great to be able to sing for many minutes.

Ballet is over. For the last class Sarah and I again spent the time outside, which is when she discovered the real bank doors that open automatically when you get close. She didn’t go through them but she did get close to them often. We also watched many buses.

I have played Hangman with the girls twice! It seems to work best if I write the whole alphabet on the white board and then cross out letters as they guess them. I also have my drawing be elaborate so they always get the phrase before I finish the drawing.

Yesterday Sarah went across the monkey bars with Carl’s help. This was the first I have seen her do it, though Carl says they have done it together before. Still, this was awesome.

Inspired by American Ninja Warrior, Sarah tried climbing up the side pole part of our indoor climbing ladder. What a strong little monkey she is.

Sarah is increasing the frequency with which she wants to do her potty stops completely independently with the door shut. 

I have been offering new foods at dinner a bit more than sometimes and both girls have been adventurous try-ers. They tried pea shoots, nectarines, avocado slices, and lettuce with salad dressing.

Sarah likes to play the piano or guitar sometimes and her experimenting is really beautiful to hear. 

Overall it has been a great week. I have been exercising daily. Usually I had just been doing Zumba twice a week. Now I am also doing a bit of a workout at home. It doesn’t take long and it is definitely helping me feel better and more energized. I have been continuing to talk to my mom daily. I have stopped having caffein. I’m not sure if this last thing makes a difference but it hasn’t seemed to affect to my energy (or sometimes lack thereof). I am also holding my grumpiness a bit more gently in terms of how long I berate myself after a case of the grumps. 

Little Miss Capable just walked into the kitchen, picked up her water bottle from the drying rack, held it up to the water spout on the fridge and started to fill it. I then helped a bit because it is an awkward bottle to fill.

I hope you are all having lovely weekends.

August 9

This weekend we had a fabulous time at Bald Eagle State Park in PA. We were with Carl’s cousin and her family, all of us enjoying swimming in a lake, playing in the sand, playing on a playground, playing on bunk beds at the B&B, and then renting a pontoon boat. The weather was perfect and the scenery was beautiful. As usual, there were many many many times when all Sarah wanted to do were all the things we didn’t want her to do and that she just kept trying repeatedly. Tonight I had a small epiphany of realizing that that is part of her autism. It doesn’t mean something is terribly wrong with me or with her. It just means she wants to do certain things over and over, especially on trips because then these favorite things (ramps, doors, air hand dryers) are present in new forms and are extra prevalent. It was a relief to realize this was actually all ok.

That has been my motto for the week, written on a post-it above my desk: It’s all ok. I also have another one on the top of my computer: Everyone is ok. 

As you know, for a long time things were feeling very challenging for me. My mom wisely recommended taking some small but concrete steps to change things. One of the changes was to make my post-its. Another change was to call my mom daily (except during travel). These changes have really helped. I think part of what helps is talking to someone who I know (without a shadow of a doubt) always loves me, always cheers for me, and is interested in my deepest feelings as well as my not-so-deep thoughts. I get to talk about any and all of it. It helps keep my attention out. It also sometimes helps me tidy a room because I don’t feel like I’m really cleaning it; I’m just picking up one thing and then one more thing. I know I have lots of amazing supportive people that I see daily, but the addition of the phone call really does seem to be helping. My mom can also tell when I am about to set too-high expectations and standards for myself and nip it in the bud before I even get going (sometimes).

I had a great talk with M. this week too. She helped me remember that along with reminding myself it is all ok, I can acknowledge and name however I am feeling at that moment, accepting any and all feelings. And she suggested doing jumping jacks when I want to shift my energy or mood a bit. She also helped me verbalize why the phone calls with my mom were important and helpful.

I have had more good cries than usual lately too and I think that has also helped. Carl has been his usual wonderful listening self. I feel like I am getting back to who I recognize as myself, in terms of my energy and motivation and sense of being.

At ballet class, when everyone was sitting in a circle, Sarah got up and walked over to the teacher and said where the teacher’s phone was. On the one hand, I could have been annoyed at Sarah for being disruptive. This time I saw how awesome it was that she has the skills to be disruptive in that way. There were times in the past when I would have given anything for Sarah to be able to crawl/sit/stand/walk/talk. How awesome that she can now walk and talk so well as to be disruptive in class! So often I have been focusing on where we aren't that I forget to see and celebrate where we are.

Also at ballet, Sarah came out to see me and I asked if she wanted to go back to the class or sit with me or go outside with me. We went outside. We had a pleasant, easy time and saw two people that we knew. Amy unfortunately missed us the whole time, but aside from that it felt like a success. 

I was also thinking that when I check my phone while at zumba, so often slightly expecting a text that Sarah is having an allergic reaction (I know on some level this doesn’t make sense but it is what I have been doing), I could instead use the moment to celebrate how long Sarah has been safe and well. She really only has had one severe reaction. So, instead of always fearing another one, I could use each moment I feel fearful to remind myself that she is ok.

One of the things that has always seemed magical to me about the Alexander Technique is that subtle changes can make a huge difference to my experience. It is the same with these tiny shifts in perspective. They can make a huge difference.

Much love to you all.

August 2

Things have been mostly the same as the previous week with some good parts and some hard parts. Some highlights are when Sarah came down one morning and handed me a hair clip to put in her hair. This is not something that has occurred before or since, but it was a wonderful moment. Also, we have some volunteers who we refer to as M with a D or M with a T because their names sound the same so we distinguish based on spelling. On Friday Sarah said she was going to play with G with a G. 

Sarah’s body and potty situation are back to normal. Yay!

I did do SR time every day Sunday-Thursday for half an hour with just Sarah and then another half hour with Amy in the room too. I was glad to have both kinds of sessions. When it is just Sarah and me then I have an easier time working towards goals such as following a short schedule or playing card or board games. Sarah loves to pretend to nap and lately she has returned to the theme of being in a dorm room at Swarthmore. For some of those moments I played along with that scenario. Other times I said that it was fine if she wanted to nap and that I would play a game while I waited for her to wake up. I would bring down a game and start setting it up. Every time I did this she quickly came over to join me and we played memory matching games or Hello Kitty Uno or we did a puzzle together. When Amy joins us in the room then I take more of a back seat and let Amy drive or join the play because you can’t get more kid-like than that. Amy has vast amounts of energy so she joins some of Sarah’s play scenarios more physically and whole heartedly than I often do. 

Ballet class did not go well. Since it had seemed to work ok to come tell Sarah she could join me in the waiting area if she didn’t want to participate in class, I moved to do that again. This time Sarah screamed and resisted mightily, but I felt committed to the action at that point so I carried her out under my arm. She kept screaming so I took her outside. I felt embarrassed and mad. In hindsight it would of course have been less disruptive to let her just walk back and forth in the class. I think that is what I will allow for the next two (and final) classes. I am not signing them up for another session. If Amy wants to continue then I will find a class she can take on a morning when Sarah has school and Amy doesn’t. I have signed the girls up for gymnastics again, at a time when Sonia can be the in-room attendant, since that worked so well last year. 

I got a few warnings that my cluster headaches might be ramping up so I am already on the medication to hopefully skip the cluster. What a difference a year makes. Last year I was rarin’ to go without medication. This year, with even a mild flicker of a cluster headache I felt like I just couldn’t even manage. I just felt worn out before it even got going. 

I have been feeling mightily worn out as a parent, with barely a shred of Son-Riseyness in me. Last night it talking with my mom and crying about it all, I was able to realize again how hard I have been on myself without quite noticing it. I could see that it isn’t what I choose to do with my time (eg. reading a fun book or being super industrious and cooking and cleaning all the time, etc), it is how I am judging my choices and actions. It isn’t about finding the miracle formula for a balance of work and play. It is about holding all of my choices with compassion and support. I feel like a newborn animal on wobbly legs in terms of really using this acceptance muscle for my choices today, whatever they are. So often I think I can figure everything out on my own, but it was a wonderful reminder to have my mom helping me navigate and come back to more kindness towards myself. Any positive vibes you can send my way are much appreciated.

May you all have someone who helps you remember how to be kind to yourself.

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.