March 25

Last weekend we ended up switching to an oral antibiotic for Sarah after her other ear drum ruptured. She started feeling better quickly but her hearing is still quite impaired as of today. She asks for music but after I start it then she asks where the music is. She can only hear if things are very loud. If I am right in front of her face then she must be able to read my lips a bit because that communication still works. I spoke with a nurse this morning and she said it might take a month before Sarah’s hearing is back to normal. Ugh. This is impacting Sarah’s time at school. Her speech therapist there said she just isn’t quite herself and doesn’t interact like she used to. At home I feel like Sarah is mostly herself and we have plenty of good interactions, in part because they are familiar routine play interactions such as me making sad faces and Sarah laughing. She also likes it when I sing songs from Sandra Boynton's Frog Trouble book, though she never wants me to play the actual album. Maybe it is because my renditions come with facial expressions. Sc noted that doing SR time was more like it was in the early years when we always made sure to be in front of Sarah’s face. 

I notice that sometimes when I speak more loudly to Sarah there is a feeling in me that Sarah is stupid. This rather fills me with horror that I’m having the thought and behaving that way towards her. It also points out that I don’t normally view her as stupid. Yes, she’s got delays and challenges, but she is never stupid. That is rather beautiful to notice. I also think that in the broader context this may happen with lots of people when they speak more loudly or slowly for someone else; perhaps there is the untrue companion belief that the other person is stupid. 

Amy had a wonderful birthday party on Sunday and now has enough art supplies to last forever. It was lovely to be healthy for her party, which was in stark contrast to the similar party we had for Sarah when I was in the middle of my long sickness. Did you know it can actually feel easy to make a cake and cupcakes? Even when you have a cupcake fail and need to make another batch at 7am the next morning? And it can feel easy to put things in a car and take them to a gymnastics place? 

Lately I have been reminding myself to notice and enjoy the fact that I am well. And that I am actually done with student teaching (1999) and can breathe a sigh of relief. I scan through various hard experiences and let myself really notice that they are done and I’m here now with so many things going swimmingly well. 

Speaking of hard things being done, my headaches seem to be gone except for the occasional flicker. This is with me on full meds and seeing my MT once or twice a week and getting extra Alexander lessons. I am hopeful that in a month or two I’ll be able to start weaning myself off the meds.

Here is a profound moment of learning: my refrigerator door has space for an extra egg carton behind the one I usually keep in the egg spot! I have had this fridge for years and never noticed. Not only is this life changing just by itself, but I feel like it can be a metaphor for life. When I start feeling tight or anxious about parenting decisions or other concerns of life, I remind myself that perhaps there is space for an extra egg carton. This means there is more space for me and my not knowing. There is more room for imperfection or variability. There is just more room.

I have also been ruminating on the Option/Son-Rise idea that “to love is to be happy with.” There are countless moments when I feel annoyed at those that I profess to love. I am aiming to eliminate my sighs of consternation. I am seeking to give my beloveds that extra-egg carton bit of space in being themselves without my being judgmental or unhappy with them.  

If you have a moment to send some love to Sarah’s ears that would be much appreciated.

Love and extra-egg carton space to all of you.

March 18 (one of the best days!)

Six years ago today I got the best birthday present I could ever wish for. It is a present that renews itself each year. Happy birthday to my sweet artist Amy! And I tell you, I don’t feel a day over 40!

Mom-Mom and Pop-Pop are here to help us celebrate. They have also helped rescue wooden mice from one game that got put inside a plastic pig from another game (by Amy) and have been trapped for a year. This is a miracle. 

I have been thinking a lot about trust. I often don’t trust Sarah about her decision not to wear a coat when it is cold. This week I received two lessons showing me that I can trust her more. On a particularly cold day when it was time to get Amy from school, Sarah requested her coat and asked to have it zipped. Another day when we returned home with Amy and it was snowy and blustery, Sarah wanted to stay outside and play. Given how little snow we got this winter I let her do it and after several minutes she said she was cold and wanted to go inside. These moments may seem so mundane, but the important thing is that I can trust Sarah to tell me when she is cold and ask for what she needs to take care of herself. What if I could trust her about more things more often? at least when timing and circumstances allow. What if I could trust life a bit more? 

Yesterday I felt a bit sorry for myself because I had morning plans that I thought were perfect birthday-eve plans with two friends, but then in the middle of the first I had to go get Sarah from school because she was sick. I had known when I sent her to school that she wasn’t 100% but I thought she was still in relatively good shape. It turns out it was an ear infection and then her ear drum ruptured so now we are dealing with drainage (ew gross) and drops (you have probably heard the screams of protest). The good thing is that because the ear drum ruptured we are able to do localized drops instead of a systemic oral antibiotic, which wouldn’t be good for her digestive system that has already had three rounds of antibiotics this winter. The other plan that changed was that I had been intending to go to Amy’s class to help her hand out birthday treats but then I needed to be with Sarah and take her to the doctor. One of the people who works at Amy’s school is also a sitter and friend who has known Amy since before she was born. It turns out that when I couldn’t make it, she went in my stead. I just got all teary hearing this. I love feeling like friends have my back without my even asking. Another friend picked Amy up from school. The village certainly makes life feel easier, especially when the village support system activates with just a few hours of notice.

In other news, I forgot to mention that Sarah has been buttoning and zipping her school pants all by herself for weeks!!!!!

With Sc on Monday, Sarah said “Sc, I want to be an Uber driver when I grow up.” Yesterday Sarah told me, “Mom, On Monday I will read Brown Bear Brown Bear with Sc!” I love this clear and delighted communication.

I did the ATEC autism evaluation checklist again as I have the past couple of years regarding Sarah. This year her score was higher than last time. The lower the score the better so this was slightly surprising and disappointing. The good thing is that each time I do it they send me a summary of my answers along with the score. It is so subjective. Last year I apparently said she could have meaningful conversations. This year I answered that she couldn’t. Neither is really a true answer. Sometimes she can and sometimes she can’t. What do they mean by meaningful? At what age level? I have more meaningful conversations with Amy than I do with Sarah but Sarah’s ability continues to improve. It’s not that my conversations with Sarah aren’t meaningful, it is that I raised the bar of my expectations of her eventual capability. So maybe the score is useful as a metric and maybe it isn’t. I am certainly aware that she is on the spectrum and isn’t a neurotypical child. I am also aware that she continues to grow and learn and develop. That is all I really need to know. 

My headaches seem to be under control. I still get them but only once every few days and they aren’t horrendous. I am up to my full level of meds and I am also continuing with weekly Jenny-Rise sessions and I have renewed my practice of doing Alexander Technique constructive rest. This feels like just the right combination. I also saw an amazing video this week about should movements and muscles. I realized that I tend to forget about my serratus anterior. When I think about lengthening my pecs while remembering my serratus anterior then my whole upper body feels more open and supported. My shoulder joint feels freer and my kinesthetic sense of where it is feels more accurate after my Jenny-Rise time this week. Working with my AT teacher is helping me get even more comfortable while giving massages and ever more aware of my habits in all realms. Reading the trigger point bible feels like drinking from a well of delicious water. I had wonderful teaching experiences this week where I learned things I will now implement with all students from now on. Anyway, I’m feeling blessed by the convergence of all of these things. 

Thank you all for being part of my life.

March 11

The bus experience has been good this week. It has been timely and reliable. I am now actually wanting them not to switch companies because I would like to keep the routine we have with the current driver. I like that he comes on time. I like that he says hello. I also noticed and appreciated this week how the other students greet Sarah when she gets on and that she says hello to some of them as well. I love that.

We have worked over the years to help Sarah understand and communicate about her allergies. Her teachers work on this too. Recently Carl was having some peanut butter and decided to ask her if she wanted some to see what she would say. She said, “No thank you, I am allergic to peanut butter.” YAY!!!!!!!!!!!!!!!!! I think the next step is for me to show her various pictures of peanuts, pecans, and walnuts so that she can become as adept with refusing those items as well.

For several months the girls have been doing Splashmath on the computer. It is designed for kids to practice math in a fun way at whatever level is appropriate for them. Sarah lately has been choosing to do Splashmath instead of watching a tv show with Amy. I was taking this in stride as normal but my mom pointed out that this is huge and that it is huge that we found something she likes so much to help her practice math. The credit goes to Amy’s school which got all of the students started with it. When Amy began doing it at home then Sarah noticed and wanted to do it too. 

Sarah has been asking for pants with little white dots for a long time. She used to have a pair when she was much younger. Thursday she asked again. As luck would have it, on Friday a package arrived from a good friend of mine and it included blue pants with small white dots! And they fit Sarah! Sometimes things just work out so perfectly.

Amy’s birthday is in a week and that means that she is student of the week in her class at school starting on Monday. There was a questionnaire for her to complete. One question asked what about herself she was proud of. She answered “my art.” I love her art too! She has such a passion for art that sometimes she starts coloring or constructing something when she first wakes up in the morning before she even has breakfast and sometimes without bothering to turn on a light! Yesterday she made a play doh Wonder Woman for me. 

Often when Sarah gets upset about something I react with annoyance and impatience. This morning she was desperate for her favorite khaki pants. I had washed them last night but hadn’t put them in the dryer. Sarah was screaming and yelling with impatience. At first I was grumpy towards her because I thought she should just understand that it takes time for them to dry and that screaming doesn’t make it happen any faster. Then somehow I suddenly softened and had space for her to just be sad and have her feelings. I scooped her onto my lap and she snuggled against me while crying. A few minutes later she was back to jumping and screaming and didn’t want me to hold her, but I miraculously had space for that too. I wish I could always have that space (the humbling thing is that I have it more often and easily with Amy than I do with Sarah). Perhaps I could remember that just as screaming doesn’t make the dryer work faster, my disdainful wrath doesn’t result in faster equanimity in Sarah. Darn it! Perhaps the best thing to remember is how much better I felt in my body and self about the interaction.

Sometimes I am dumbfounded by the realization that Sarah and Amy are each their own person and that they are different from me. 

lots of love to you (who are all different! and not me! and you are yourselves the whole time!)

March 4

I am finally finally finally better. I still need to rest a little more often than usual and I am letting myself do so when maybe normally I would push past my tiredness. My headaches are definitely back, but so far they are still manageable. 

Sarah’s bus situation continued to be irregular, sometimes a little late, sometimes so on time it seemed early, but then yesterday went beyond the pale. The bus was extremely prompt (6:58 am) so it was good that I continue to have Sarah ready by 6:50 even when the bus usually doesn’t come until 7:20. I felt excited that maybe things were finally getting on track. When I got back from taking Amy to school I received a call from Sarah’s teacher saying that the bus hadn’t yet arrived at school. This was over an hour after it should have arrived. The bus company had not called the school. I called the bus company and got no answer. I left a message for the public school transportation person. I called the bus company again and got no answer. After 15 minutes of freaking out that my child was lost or that the van had been in an accident, I called the bus company for the third time and got through. The person excused the lack of a phone call to the school with the fact that she is the only person working the phones. That is NO EXCUSE. You make time to make such a call. Evidently the bus had run out of fuel and someone was sent to help and it would get to the school shortly. It did arrive safely and Sarah’s teacher called to let me know she was there. Still, in my book there is no excuse for letting so much time pass and not contacting the school when people will be worrying about where the children are. No excuse for behavior that could result in a mama bear panicking over the life of her cub. To round out the day, when the van came to return Sarah it drove rather fast down our street, faster than I think it should have no matter what, and passed my house without stopping. If I had been able to pause and think calmly I might have realized that of course it would slow down and back up and drop Sarah off. But my mama bear self immediately ran out of the house and was running down the middle of the street waving my arms and yelling “STOP.” The driver (true, he had only been the driver for a week) claimed that he normally came from the other end of the street. This is not true. That does not excuse the speed no matter what. The tricky thing with this whole situation is that I have a handful of afternoons when I am scheduled to teach and that requires Sarah to be able to take the bus home and have a sitter meet her. And yet this bus ridiculousness is untenable long term. The good news is that apparently the public school transportation person is looking for a new bus company. I hope this is true. If it is not or in the meantime, I may decide to take Sarah every morning just to have a bit more reliability in my day, although this is also not ideal given how much Sarah loves riding on the van. 

Sometimes I feel like feeding my children is like trying to go on a diet where you make resolves and it all seems easy and achievable until some moment feels hard emotionally. I often resolve to cut back on the number of disposable fruit/veggie pouches I give the kids given that they aren’t great for the environment. I resolve that I will make more healthy options from scratch. Then a difficult day or moment rolls around and I’m right back to “Here, have another pouch.”  I’m trying to hold all of the food stuff gently given that it was only within the week that I have gotten back in the groove for making juice and yogurt, etc. Those things aren’t difficult but none of these things really are. It is just that when you take 20 things that are small, quick, and easy, added together it isn’t so small, quick, or easy. (And sometimes I just want to sit and read a book).

I have been realizing that the dinner portions I provide are too small because after the girls polish off dinner and their treat then they have been eating a full yogurt after that. These are growing girls!

I still struggle with how often I yell at the kids, especially at Sarah. Every time I resolve never to do so again then I seem to rebound with even more yelling. Perhaps the first step is to stop resolving not to yell. 

I’ve been generally appreciating Sarah’s language skills lately. There are still many times when she loses her clarity due to excitement, but overall she is putting together beautiful full and clear sentences that are grammatically correct and have 7-9 words. I count sometimes when a particular gem comes out of her mouth. Yesterday she had her 10 year well-visit, and after the doctor looked in her ears Sarah said, “Dr. ____, that tickled my ears a little bit!” So clear, connected, spontaneous, and beautiful.

I have also been appreciating how socially comfortable Amy is when I take her to school. With each classmate that she sees on the way she says “hi ___” and waves. I don’t recall my ever having that confidence or ease in elementary school (if ever). 

Lots of love to all of you.