Sarah likes to create delicious ice cream sundaes with loads of chocolate chips on top. Sometimes she goes a bit overboard. Carl and I suggested that she use a small scoop that would help with getting a reasonable portion. Sarah proceeded to select a scoop… the 1 cup measuring cup! That is bigger than her whole dish of ice cream! We were all cracking up.
Sarah is a sparkly, passionate, stubborn child of 17. She has developmental delays and autism. When she was 4 I decided to run a Son-Rise Program, calling it Sarah-Rise. She wasn’t speaking or eating well or potty trained. Eye contact was fleeting, she didn’t play games or play imaginatively. She couldn’t read or write. All of that has changed. I started writing weekly updates so that people could follow our journey.
Sunday, May 30, 2021
May 30: Impeccable Timing and Large Scoops of Chocolate
Sunday, May 23, 2021
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.
Sunday, May 16, 2021
May 16: Funny Sarah Moments and Sarah's Best Friend
Imagine if you will…
Sunday, May 9, 2021
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.
Sunday, May 2, 2021
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.
Sunday, April 25, 2021
April 25: Coming in Close to Big Emotions
Sunday, April 18, 2021
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.