May 23: Cooperative Games and Earnest Songs

We are back to in-person Sarah-Rise sessions with Sc!! These session include Amy, as they have for years. It is beyond wonderful to have Sc in person even though the FaceTime sessions were impressively effective. Last Tuesday they spent the whole time outside with sidewalk chalk, cauldrons, and brooms. 

Last Sunday Sarah participated in a virtual piano recital and did as beautifully as always. Practicing piano is never her favorite thing, and she resists mightily if I attempt to help or steer her practice in any way. She will practice, but she will only play what she wants to play. Her teacher creatively and kindly continues to find ways to teach her new songs. Once Sarah is in the groove with a song that is the only thing she will practice. This is especially noticeable after a recital, which is the time most kids stop playing their recital pieces and move on to something new. Not Sarah. She is on a roll with “Tucker’s Secret Life” and will sing along about that “big dog boogie” every day when she practices for her 5 minutes. I do love her earnest singing.

Sarah received her first Pfizer covid-19 vaccine on Wednesday and had no side effects. She handled the whole process like a pro, following me easily through the maze of arrows, signs, and people. 

Yesterday Carl participated in an all-day bike race that went well but was intense. The girls and I had a lovely relaxed day including snuggles, a nap, fruit smoothy milkshakes, making beaded bracelets with supplies from Grandma, an outdoor playdate, the sprinkler, and playing The Secret Door. The Secret Door is a cooperative memory game where you are hoping to avoid turning over clock cards. Since Sarah loves clocks and loves pretend things going wrong, we had a great time saying “Oh dear” every time one of us revealed a clock.

As I write, Sarah and I are outside. She is enjoying the bubble machine which pumps out bubbles at a fast and generous rate. Sarah is singing, “bubbles here, bubbles there, bubbles up, bubbles down, bubbles bubbles all around.” I’m not sure if she made that up or not. 

Carl and Amy are away for a Girl Scout horseback riding adventure. When they return I’m sure we will play more rounds of The Secret Door and perhaps a few games of Zombie Kids. Zombie Kids is another cooperative game, and it has the option to evolve in complexity the more you play. The players are kids clearing zombies out of their school. Amy keeps track of the complexity and helps guide the rest of us each time we play. 

May 16: Funny Sarah Moments and Sarah's Best Friend

Imagine if you will…

I calmly tell Sarah that I have a question and if the answer is no that is totally ok and I will respect her wishes. “Could I wash your musical note shirt and pajama pants that you have been wearing for a long time? You could wear the matching shirt.”

Instead of just saying no and trusting that I will heed her words, she yells loudly in protest that I dare suggest such a thing.

Days later… Anna in some way asks about washing Sarah’s 24/7 wardrobe and Sarah somehow conveys: But of course, you merely had to ask.

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Another moment of note…

Sarah one morning, screaming repeatedly to Amy, “Wake up!!”

I encourage her to come to my room and snuggle with Carl while I get up to start the day. Sarah gets in bed next to Carl, promptly closes her eyes, and whispers “good night.”

She asks me to close the door on my way out.

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We are currently in the last few precious hours of an in-person visit with Mom-Mom. The girls dearly love having Conversations with Mom-Mom, involving snuggles and play. They have pretended to be in the hospital or on the way to the hospital. They have also been waitresses and chefs in a restaurant, making pretend food from Model Magic (a type of modeling clay). It is amazing to me how, after so many months of not being together, it instantly feels normal to be together in person. It is as if no time had passed, except for the fact that Amy grew 3 inches since Mom-Mom last saw her. 

Over the years I have consistently been impressed by how often solutions to my problems are forthcoming as soon as I share my predicaments with others. I decided to trust that the same sort of magic that led to finding volunteers and solutions to problems would work to help me find a professional editor for my book. It turns out that a friend of our sitter C is an editor. I will speak with her on May 25 to see if we are a good match, but I love her website and the book that she wrote about her own life. So I’m feeling hopeful and once again supported after declaring my wishes to others.

Sarah filled out a questionnaire created by Anna and Sarah’s answer about her best friend warms my heart. The page is All About Sarah. In Sarah’s words..

my favorite color is pink 

my family is dad, mom, and amy

my best friend is Amy

my favorite toy is the goodnight moon house.

Lots of love to all of you. May solutions to your problems be easily forthcoming.

May 9: Warming What Is Cold and Reconnecting to How I Want to Be

 One morning Sarah came to breakfast, sipped her hot chocolate, and said, “I’m going to heat it up a little bit. It’s not very warm at all.” I’m not sure why that was so endearing, but it was. Something about all of her little word choices that made up such a complete expression.

Another day, Sarah filled out a pretend doctor’s form created by Anna. Sarah put a drawing of musical notes for her gender. I love that so much. If anyone is a musical note it is Sarah. 

Carl and I went to our first party since the world closed for Covid-19. It was an outdoor dance party with masks, social distancing, and limited attendance. We went with some good friends so it was extra wonderful, but it was coooold. I think it was 52 degrees, which is cold for me. I wore my winter coat the whole time. Before we left I was talking to Sarah about what I should wear. She loved it when I snuggled next to her and told her to keep me warm. She suggested I wear my snow boots. I demurred but said I would probably wish I had followed her suggestion. I really did wish that. My toes were cold all night, but it was still wonderful. And how many people go to dance parties and wear their winter coat and mittens the whole time? It was truly a moment to remember.

I don’t have much more to say about the week. For many days I had been in a groove of being able to actively listen and give room for all sorts of big feelings that the kids had. That felt great and effective. Then, as always happens, there was a moment when I just really didn’t have the internal room. The problem with such moments is that I feel like I fall back into my old neural pathways for responding and I’m grumpy, put-upon, and short-tempered. Then it feels like turning a barge through sludge to get back to where I had just been before. I’m working to compassionately clear my backlog of tight feelings so I can return to giving the loving attention I had been providing. Luckily, despite moments of feeling like a bad mom, everyone still seems to be existing and even thriving and even loving me. 

This morning I got to enjoy a light first breakfast in bed while doing a crossword puzzle, followed by a second breakfast of a chocolate-chip waffle downstairs. Next to the waffle were 14 Playdoh treats and a playdoh cupcake with 10 sprinkles, thus denoting the kids’ ages. Amy’s card included a drawing of the Tiny Chef, Sarah’s card was made with assistance from Amy, but Sarah drew the musical notes herself. Carl made a special crossword puzzle just for me. So, the day has started off well. The big plan for the rest of the day, at my request, is a basement cleaning party. Party is perhaps a stretch of terminology, but hopefully it will be a fun and productive way to spend the day together. It’s not that I want to clean the basement, but I would really enjoy having it clean and that requires participation from all. 

I hope you have a day where you feel celebrated for who you are, whether that is as a mother in some way or not. 

May 2: In-Person Visits and Academic Achievements!

We are in the midst of a wonderful in-person, unmasked visit with Grammy and Granddad! This is the first time we have seen them in person since Christmas 2019!!! I am already sad about the visit being over even though it isn’t quite over yet. 

Yesterday we completed a jigsaw puzzle with many cats, with Amy participating much more than usual. We went for a walk and I was stunned that Sarah easily, even eagerly, consented to do so. Grammy figured out how to make the Goodnight Moon game riotously funny and competitive, which is not the usual scenario for the easy game. We also played multiple rounds of Zombie Kids, Amy’s favorite board game. I highly recommend it. The kid characters work together to eliminate zombies from their school. It has evolving levels of difficulty that require mental gymnastics and a good memory, but it can also stay at an easy Sarah level. This morning Amy dressed as one of the kid characters, with a staff and cape.

Earlier in the week, Amy got to have an in-person outdoor visit with M. The last time they saw each other, Amy was 8 (she is now 10) and was 4 inches shorter than she is now. M is our SR volunteer who has been Amy’s person for the past several years so that I could have SR time with Sarah. M feels like a fairy godmother or bonus grandmother. Upon learning that she would get to see M, Amy’s joy filled her being. We have so many amazingly supportive and wonderful people in our lives, but M is the only grown-up that Amy doesn’t have to share with Sarah. To have someone give Amy an hour of undivided, enthusiastic attention is deeply meaningful. 

Sarah has started singing the words to the book Goodnight Moon. It is so sweet and earnest. 

Sarah finished reading an easy chapter book she borrowed from Amy. It is a Dr. Kitty Cat book called Clover the Bunny. Inspired by Amy’s school writing assignment and with Anna’s help, Sarah wrote a paragraph about the book! Anna prompted Sarah with questions and helped with making complete sentences, but really this was driven by Sarah. She wrote, “I liked reading clover the bunny. At the beginning the animals had paw pox! Paw pox maks you paws itchy. The cik [sick] animals had to miss the camping trip.” Sarah even looked in the book, unprompted, to learn how to spell paw pox!! I continue to be floored by how Sarah’s mind functions when she is with Anna, with academic ability that I didn’t know she had. 

Anna made a blank doctor’s form for Sarah to complete because Sarah loves pretending to go to the doctor. Sarah’s answers were adorable and point out how often she copies text to practice her writing. Where the form said “Name” Sarah wrote “Sarah” but for “Address” Sarah wrote “Address.” For “phone number” she wrote “phone number.” She wrote her date of birth as a math equation that isn’t at all her birthday but is an adorable answer, “3+3=2017.” Her “reason for visit” was “reason for visit.” I cannot stand the adorableness!

I have had two tiny miraculous moments of starting to beat up on myself mentally/emotionally for not handling something better, but then stopping myself! I affirmed that actually I couldn’t have known how things would go so there is no need to feel bad. It was amazing to feel the physical pull into woe and reverse it mid-droop.

May you experience delighted focused attention that helps you reach your fullest potential. (And remember, shh, that that attention could be provided by yourself.)

April 25: Coming in Close to Big Emotions

I have been experimenting with really coming in close to Sarah when she gets upset. I don’t always have the mental or emotional space within myself to do this, but when I do it seems helpful. I verbally acknowledge what Sarah is feeling and say that those feelings are ok. Sometimes she gives a quiet “ok” that feels like I hit the mark. I nudge her face with my face as if I’m being a cat saying “I love you.” There was one day where I was more playful with her too, hamming up my own concern about the situation and so she vacillated between laughter and tears. 

It always feels good to me when I don’t push Sarah’s intense screamy feelings away. There certainly were moments where I realized my open attention was shrinking and I called Carl in for reinforcement. What has been crystal clear is that giving myself time alone to feel my feelings and shed tears if needed really helps me be who I want to be with Sarah and Amy. It is as if I have a new palette of responses available and clearer insight without effort. The effort is in noticing when my own load is accumulating and clearing that.

All of that said, I confess to an under-layer of hoping that eventually Sarah will have gotten all of her screams out and will achieve a new level of calm flexibility. When she was very young she hated taking medicine via a syringe. After a long and intense crying session about it, something shifted and she has been a pro ever since, taking any medicine easily. 

Amy has been having feelings too, mainly pertaining to school. She has handled this whole past year so resiliently and gracefully, but I imagine it has been harder for her than we maybe realized. Usually she is someone who loves school, but with her current hybrid situation of in-person school two days a week and fully virtual school 3 days a week, she doesn’t look forward to her school week. The in-person days are a blend of doing the usual virtual work and doing some things live as a group, which means it takes her longer to do the virtual assignments. This feels like a burden and she compares her speed to those around her who finish sooner. When I offer the option of going all virtual again she adamantly refuses. 

Amy's school now requires her to attend work-time zooms on her virtual days. This means she has to wait to do her work but doesn’t feel connected to anyone because they are all doing their individual assignments. I am frustrated that the school thinks this is a good solution. I wonder if there are other kids similarly miserable about the new zooms. Amy has never been one to dread the end of a weekend and now she does. I can only hope that the next school year will be better, but I have begun to realize it may not be five day in-person school. 

We are looking forward to an outdoor visit with Grandma, Grandpa, Sonia, and Sonia’s partner today. It is exciting to have warmer weather and to have more completely vaccinated family members. 

I ordered an apron that looks like the one Tiny Chef wears. Sarah likes to wear it while cooking mush, and she calls everything she makes mush, even if it is soy milk with frozen blueberries heated on the stove. Meanwhile, she is now wearing her new musical note shirt custom made by Grandma. The color difference between her old shirt and the new one is striking. They are made with identical fabric but the one she has worn 24/7 for umpteen weeks has yellowed. Hopefully this new shirt will allow me to wash her garments more frequently and with less upset.

May you all have space and a kind ear for your feelings.

April 18: A Seizure and A Notable Moment of Calm

Last Sunday night, Sarah had the first seizure she has had since being on anti-seizure medication. The first seizure in roughly two years. It lasted less than a minute and she was mostly herself afterwards except for having a headache. Her neurologist increased the dose of medication so I’m hopeful things are back under control. Many people asked how I knew it was happening. I honestly have no idea what makes me go from sleeping soundly to running into her room as fast as I can. I don’t know how I hear the rhythmic whimpers, but I do and I know what they mean. In the past it would take me a long time to settle back to sleep and the next few nights I would be on edge, as if my staying awake would somehow protect her. This time I didn’t fight my initial surge of adrenaline and didn’t try to fall asleep, which allowed me to calm myself more quickly and actually sleep. The next day I spent more time processing the emotions and fears from past seizures and was not on edge at all when it was time for bed. I reminded myself that even without medication she never had seizures two nights in a row and that when she has them they are short and she probably won’t die from one. I know there isn’t a guarantee about that, but it helped to talk myself through some rational points of view. So, after a huge adrenaline rush to start our week, we were all well and back to normal in short order.

The ring tone on my phone is the Tiny Chef singing, “If you’re happy and you know it, heat your oven to 375 degrees!” Sarah loves this and loves the picture on my t-shirt of the Tiny Chef holding a bowl of what Sarah labels mush. She loves Goodnight Moon and the bowl full of mush mentioned in the book, so she now likes to pretend to be the Tiny Chef making mush while singing about heating her oven to 375 degrees. 

I’ve been working on a book about our Sarah-Rise program and sometimes Amy reads over my shoulder. She delights in the vignette’s from when she and Sarah were much younger. Last night she said reading my writing was like magic because it made her want to go play with Sarah. She was so excited to think about the new things they could do together. I’ve been slightly concerned about how Amy would feel about the book since it is so Sarah focused, so this was a nice moment to remind me that maybe it is all ok. Maybe even better than ok. 

We have had some small but notable moments of success with saying “no” less often and with verbally acknowledging what Sarah is feeling. One reader recommended saying “I hear that you want… I hear that you are feeling…” and that has been helpful. Sarah was extremely impatient for Anna to arrive one morning and the fact that she had two minutes more to wait was intolerable. Since Amy was on a zoom call I was sticking closer to Sarah than usual to keep her quieter. Sarah and I stood at the front door together, her body bursting with desperation. I said, “I hear that you really want Anna here now. I hear that you are having a hard time waiting.” While we have tried saying similar things in the past, this specific language in this specific moment seemed to help. She rested her forehead against my chest and calmed while I rubbed her neck. 

I have also had times when I needed to do something and couldn’t be with Sarah when she was upset, but I told her that I knew how she was feeling and she could keep expressing it. I told her I wasn’t ignoring her but that I needed to do whatever I needed to do. That seemed to help her and I felt better too. Carl had a successful moment last night talking with Sarah about different feelings and how sometimes people just want to be alone. He reassured her that she could go into Amy’s room later but that Amy wanted to be alone at that moment. She seemed to understand maybe a bit more than she has at other times. 

Yesterday Carl and the girls went for a walk in the neighborhood. They came across an ancient relic: a payphone. Amy inquired as to what it was and was perplexed as Carl explained. It just didn’t make any sense to her with almost everyone now having a cell phone. What do you mean you need a quarter to make a call? What if you don’t have a quarter? It is amazing how quickly technology changes. 

I hope you are all feeling heard, whether or not you have a quarter.

April 11: Thinking Around "No"

I have started reading a book called The Yes Brain by Daniel Siegel and Tina Payne Bryson. It has inspired me to think differently about Sarah and how to help her/us. It has become increasingly obvious that she really has very little capacity to hear “no” without going into full-stress fight mode. We need to figure out a way to widen that capacity and ways for us to not actually use “no” in our speaking. Last night we had a tiny miracle of a moment at bedtime. When I said it was time to get ready for bed she said she wanted to do Zwift, which is her stationary biking program. Somehow I managed to redirect towards hanging out together in her room as something that we both loved. I promised that she could squish my nose, which is normally not something I enjoy or allow. It was a peaceful moment instead of turning into a fight. 

I have also been pointing out to Sarah that she is actually good at waiting and sometimes at hearing the word no. She has a sense of herself as not being good at waiting, but really she is phenomenally patient in many situations. I am hoping that talking about waiting and the word no when the moments are not fraught will help her brain slightly increase its ability to tolerate such concepts.

Anna created more wonderful ways to help Sarah with math. They used a small drawing of a house to be the 1 that is carried in addition. They also made flashcards with Sarah, adding matching stickers to the front and back of a card so that maybe Sarah can associate the stickers with the number problems.  I love how Anna is harnessing the strengths of Sarah’s mind and how it works to help Sarah with the areas that have usually been so challenging. 

Amy got her braces off! Now she has to wear a retainer all the time except when she eats, but she is already a pro after getting past the first two days of discomfort.

Carl and Sarah assembled a basketball hoop yesterday and then Amy joined them for a game of Witchball. Playing a game of Witch is the same as Horse or Pig, but you are spelling Witch instead. 

I got my second dose of the Moderna vaccine on Friday, and yesterday I was definitely more tired than usual, but I didn’t have any other adverse effects. 

Lots of love to all of you.