December 31: Snorkeling

Our plan, whenever going somewhere sandy, is to spend time at the beach and the pool, the beach and the pool, the beach and the pool. Our trip to St. Thomas worked beautifully for that plan. We also had the added bonus of having Mom-Mom and Pop-Pop with us too! We stayed at a place where my parents had taken me when I was in high school and college, including one year with Carl joining us. Impossibly, that was 25 or 26 years ago!

We had gotten snorkel masks and tubes ahead of time so the girls could practice during our weekly swim time when Sarah had her lesson. When we got to the island we rented flippers and one life vest for Sarah to wear. It took Sarah some time of easing in slowly to get comfortable. Amy was at home immediately like the mermaid she is. I used to be an anxious snorkeler but was much more comfortable this time. We even went on a snorkel cruise. The captain suggested having Sarah hold onto a life ring that the captain pulled through the water. That worked to get Sarah really comfortable with the whole thing. By the end she was snorkeling independently, still in her life vest. She would have stayed in the water as long as time would allow. Amy sometimes got cold so if we do such a trip again I think we should get her a wetsuit to keep her insulated. 

Amy was delighted to discover many cats wondering around the property. A black cat named Midnight even let Amy pet it and give it snuggles. 

We celebrated Christmas with stockings and a very small present exchange with Mom-Mom and Pop-Pop, plus Pillsbury cinnamon rolls as is my family tradition.

We loved the tiny lizards scampering everywhere and were lucky enough to see four iguanas. One day we went to a different beach and Sarah rocked out to the live band. We also watched the Straight No Chaser livestream concert and Sarah pretended to have a microphone to sing with them. 

After our time on the island we flew to Philly so we could spend time with Grammy and Granddad and my brother and uncle. Much fun was had playing the new Atari system I got for Carl. It was his idea so perhaps it’s not a surprise that we each bought each other the same game! Cosmic Ark was my favorite back in the day and we each got it for the other. Sarah has been missing everyone, but especially Granddad, a lot since getting home so hopefully we can have more family visits soon.

December 24: No More Goodnight Moon

I turned a game that Carl got for the girls into a drinking game. They don’t know that adults often play drinking games. What they know is that when we play The Fairy Game, a cooperative endeavor to save a garden, if someone draws an Old Man Winter card then everyone takes a drink of water. Keeping everyone hydrated is no easy task so clearly I just need to have us play the game daily. 

Sarah’s usual pattern with books is to love a book intensely and look at it all the time for weeks or months and then suddenly decide she is done with it and it needs to live in her closet or be given away. After years of loving Goodnight Moon and constantly wearing Goodnight Moon socks, she is done! She wants to give the book away and she actually thinks that I did already. What I did was hide it in the basement to await a change of heart. If she never wants it again that is fine but I learned my lesson after buying Brown Bear, Brown Bear, What Do You See? multiple times. Sarah has also started wearing all of her other sock patterns. 

When she came home from her last day of school before winter break, Sarah walked in the door and burst into tears. She was so sad that she has to wait two weeks to see her bus driver again. She sat on my lap for half an hour crying and talking about her feelings. She only got up and took off her coat and shoes when Anna arrived, but then continued processing her feelings. She has been similarly sad after most of her naps lately, as if remembering anew that she has to wait to see her best bud. 

Amy worked her tail off doing homework before winter break. She still has one project that is due when she returns in January that involves making pages of a graphic novel to go with a book the class read. It’s not something she wants to rush, and I’m incredibly impressed with her work. I’m not surprised by her ability but I’m ever impressed with her increasing skill. 

After much deliberation and with input from my publisher, I have a new title for my book. In January 2025 you can look for Watching Sarah Rise: A Journey of Thriving with Autism. It is astonishing how much effort and debate went into the process of finding a simple title that everyone was happy with and that conveyed enough about the subject matter. 

December 17: Gingerbread and Board Books

Last Sunday the girls and I made gingerbread cookies, and I marveled over how little they need my help with it anymore. I still put the trays in the oven and take them out, but that is largely because Sarah and Amy are busy rolling, cutting, and decorating their dough. Amy mostly used cookie cutters but she did go beyond that when she made a scoliosis brace cookie. Sarah mostly made musical whole notes with a circular cookie cutter, but she also made some notes just by rolling and pressing  the dough in her hands. I made the large cookies that comprise the walls and roof for a gingerbread house, which they decorated on Tuesday. The house is so large that it needs a day or two for the frosting to dry so that the pieces are stable and can withstand the application of many pieces of candy.

Amy had another follow-up appointment regarding her surgery. While it is absolutely the best case scenario to be told all is well, it did feel frustrating for her to miss some school to go sit and wait for a long time and be seen for all of five minutes, being told exactly what we heard in the follow-up with a different doctor the week before. She then missed the same class at school the next day for her Schroth appointment. It’s been a year of appointments and missed science classes, which is the most terrible thing to miss since it is the one class she has with her bestie.

Sarah went on a field trip with her Resource Room classmates on Thursday. They went to Walmart and a mall and the Olive Garden, with each kid bringing money to pay for their meals and any gifts they purchased for family. When Sarah came home I asked her what she had for lunch and she replied, “Too much.” I think most of us can relate to that feeling after dining at a restaurant! Sarah also told me that she and one other girl watched buses while they were at the Olive Garden. I love knowing she had a bus-watching buddy.

We went swimming as usual on Thursday but Sarah’s teacher unexpectedly didn’t come. Amy offered to hang out with Sarah while I swam, and she coached Sarah on kicking, getting kickboards for both of them to use. When we traded so Amy could swim, Sarah practiced a bit of kicking at the wall with me. The main challenge is to help her keep her knees straight while kicking. 

Yesterday we had a small first Christmas to open gifts that had come from Mom-Mom. The girls were quite surprised and love their new things. Sarah got a musical note watch, which she says she will never take off, and a handful of Sandra Boyton board books. She tells us that now she has eight books with pictures of Blue Hat Green Hat on the back cover! I love that that is why she likes getting more board books. Amy is in love with her new stuffed animals and is rapidly reading Deenie by Judy Blume, about a girl who gets diagnosed with scoliosis. 

One of my adventures this week has been trying to come up with alternative titles for my book, along with subtitles that would give a bit more explanation about the content. It’s tricky to get out of my mental groove after calling it Sarah-Rise forever, but I do have a handful of ideas. I’m waiting for my publisher to respond with feedback so we can finalize whatever the new title will be.

December 10: But

Sarah’s favorite sentence construction of late involves words preceding “but” and then the word “but” with nothing after it. We aren’t exactly sure how this came about, but….

It may be from some episodes of Daniel Tiger and/or when Sarah's bus driver tried to console her when there wasn’t a lot of rain when she wanted rain and he said, “It’s ok to feel disappointed, but…” I’m sure he actually said more words, but Sarah can’t tell us what they were. I’m equally sure Mom or Dad Tiger said words after their “but” but I don’t know what they were. Sarah got out the book My Friend is Sad by Mo Willems and turned it to one of the pages in which Piggie says, “But…” and cracks up looking at it. She often wants us to dialogue with her, pretending to be Gerald saying, “but you were not there to see him” so she can be Piggie saying, “But.” Sarah made a book with Anna that has pictures of tigers and the word “but” on every page. That’s it. No other words are needed. Carl and I have been enjoying the hilarity of having a long preamble about something, saying, “but” and then just leaving it as is. 

Amy figured out how to make her Schroth exercises more palatable. She has her American girl doll, who also has a brace, do the exercises with her, whether on a small ball or small chair or small blocks. It is really adorable. I love how Amy brings her creativity to any situation to make it better. 

It was another week packed full of things. I remind myself that we aren’t overloaded. We are at capacity, but it’s not too much. And it’s all good things. It is also true that we haven’t had a lot of flex time, and we sometimes have to get creative about arrangements. Wednesday evening there was a neighborhood holiday potluck. We haven’t been to one since maybe before the pandemic, unless my memory is faulty. You could also tell me I was there last year and I would believe you, although I think it has been years. The girls still made a beeline for the kids' room, and though they were massively too big for some of the bikes, that didn’t stop them from riding. Amy took a coloring book and drew a scoliosis brace on one of the Disney princesses and wrote “scoliosis strong” on it. I hope that someone else who goes through that coloring book in the future may find a surprise of support just when they need it.

I’ve been contemplating my own work lately and realizing that just because I’m good at something isn’t a reason to do it. The reason to do it is if I still love it, and luckily I do still love all of my jobs. After 21 years of studying the Alexander Technique, and over 16 years as a teacher, I am finally realizing I might actually know a bit about it and be able to teach others without always second-guessing my abilities. Also, how can I be old enough to have those numbers make sense? 

I hope you have wonderful weeks. I do not have answers to any life questions, but…

December 3: A Packed Week of Wonderfulness

Our whole week was packed with fun experiences. The girls didn’t have school on Monday so we got our Christmas tree. We let it settle for the day and decorated it Tuesday after they were home from school. My favorite part was when Sarah wanted to climb a short step ladder, but then actually leaned down to reach branches lower than the ladder. 

I took a week-long zoom class through the Option Institute called Exceptional Woman. As with other classes I have taken there, including all of my Son-Rise Program training (the Option Institute is also the home of the Autism Treatment Center of America), it was life changing in the best way. The premise of their work is that we can look at our beliefs and change them, thus living freer and happier lives. This week I realized that for all of Sarah’s life I have been holding the belief that my fear for her well-being was keeping her safe. I also suddenly came to the understanding that it has actually always been my love keeping her safe, to the extent that I can control that, and that the fear is an extra experience but not the key factor. So I can begin to let go of my superstitions and fears and go more towards feeling my love for her, trusting that I will be guided by that to best help her. The same of course also goes for caring for Amy, but I have historically had less fear for her life, and she has had fewer life-threatening moments. 

Thursday evening we went to the St Anthony Program Christmas party and had a blast. This year there was a dance floor and both girls delighted in dancing. Sarah danced the whole time there was music and loved it when I said she was cutting a rug. I danced for a little bit but then Sarah asked me to sit down! That gave me time to hang out with a friend whose daughter was also dancing. 

Friday evening we had a Higgy event to meet up with other families with kids who have scoliosis. Amy loved connecting with new friends who know exactly what it is like to wear a brace. The venue was Chuck E Cheese, which I hadn’t been to for maybe 35 years, so it was understandable that things had improved. We all had a fun time playing games and connecting with the other people. 

Yesterday morning Carl and I dropped the girls off with Anna for their December bash sleepover that they have been eagerly anticipating for months. Then we hopped in the car with Sonia and her partner and drove to Washington DC. At a rest stop I saw a fun play area with Big Bird and wanted my picture taken to send to Sarah. We got that, and I also got a wet butt from the puddle of rain water I didn’t notice on the seat! 

In DC, we met up with four other family members from different branches of my family, had a delicious dinner, and then saw Swept Away, a musical based on the album Mignonette by the Avett Brothers. I highly recommend it if you live anywhere nearby. It was riveting, powerful, and moving. Our dear friend Adrian Enscoe, from the early Sarah-Rise days, is in it and is incredibly good. 

Aside from all of our big events, some small moments of delight included Sarah talking about falling in gym class. She cracked up as she pretended to be her teacher telling her to be careful. She cracked up further when I said there was a turkey down! A baby Bow-Wow down! That baby musical note wiped out!

Furthermore, when Sarah packed for her sleepover she had a tote bag for any books or toys. She put one item in her bag: Blue Hat, Green Hat. 

Overall it was a great week! It was packed solid with  wonderful people, connections, and parties.