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.

February 25

Just as I thought I was daily making progress into health I made a U-turn and got a sinus infection. That kicked up the bronchitis cough again. So this week has felt hard. I had to cancel work Wednesday-Friday. After lots and lots of rest I am finally back to being almost fully better. I also got honest-to-goodness cluster headaches on Tuesday and Thursday nights. I feel so cramped and broken in my body from all of the sickness and coughing. Having an increase in stress and a change in sleep are common triggers for clusters. Frankly, I’m impressed that I didn’t get a real headache until this week and it wasn’t even an I-want-to-bash-my-head-on-the-sink headache. Maybe that is a testament to the progress I had made. 

On Tuesday afternoon I took Sarah to vision therapy and this time I had Amy too. Amy and I played in the waiting area. I coughed some but I didn’t think it was that bad or that loud. Apparently I was wrong. Someone else in the shared general space spoke to the vision therapist about me and requested that I leave because of my coughing. I felt terrible about this. When I went to the car with Amy to wait for the remainder of the session I just sat there crying. Between Tuesday and Wednesday I cried harder and longer than I have in a long time, the sort of deep crying where you think you might break in half and that the sadness will never stop. And yet it does. I think I had built up a lot of feelings during this past month, during times when I was so sick that I couldn’t cry because it would have hurt or triggered intense coughing. So the storms did clear and as usual I felt much better afterward.

Friday I had a Jenny-Rise session where I noticed yet another part of my tension pattern regarding my right shoulder and how/when I pull it down unnecessarily. In my wakeful moments Friday night I was able to check in with my right shoulder and let go of that tension repeatedly. Sometimes within a cluster I get headache-free nights so last night might have been one anyway (I also started my meds again) but I think my good night may also have been because of my new learning. 

In general, we have been having difficulty with Sarah’s bus being reliable. Tuesday morning the driver apparently just didn’t show up for work. So they called in a replacement driver and called some parents, just not me. When I called to ask how late it would be when it was already 5 minutes late, I was told it would be another 45 minutes. Not that this was the best response, but I yelled at the person at the bus company. The biggest issue I have is the lack of communication. The lateness is bad enough but if I was told right away then I would make different choices and take Sarah right away so she would be on time. I told the company that I was taking her so she didn’t need a pickup in the morning. Later that morning the van still showed up at our house. So the communication isn’t going well either between the company and the driver. What was striking though was that the van was 2 1/2 hours late!!!! I spoke with the public school transportation person and he listened to me very well and then also contacted the school and the bus company. Sarah’s route was made a priority for this week. Wednesday morning it was earlier than usual but we were ready because it came when I always think it should come to have a prayer of being on time to the school. Thursday it was late and I didn’t trust the estimate of when it would arrive so I took her to school myself. Friday it was 10 minutes late, late beyond when it usually comes which is already at a time when I don’t think it is possible to get to school on time. It was also late leaving school on Friday afternoon. I am keeping track of times and will do so for another week before I call the public school person again with my data. If this week was when the route was a priority I am not impressed.

Sarah’s teacher got her some khaki pants at a uniform exchange and they are Sarah’s new favorite pair of pants. Favorite to the point of wanting to wear them on the weekend and screaming when I dare say that they need to be washed. 

Amy wrote a letter to Sarah which just fills my heart entirely. It says, “Dir Sarah I hav ban mising you and I hop you ar having a gat day love, Amy.” (“Dear Sarah, I have been missing you and I hope you are having a great day. Love, Amy.”)

I hav ban missing all of you. I hop you are having a gat day.

February 18

I am almost fully well!!!!! I had forgotten what that felt like. I am amazed at how long it takes to become fully well after being very sick. Each day I have more energy and I cough less. And yet I still need naps to get through the day and I am still ready to go to bed at 8pm. The girls are also well. Carl is still sick, but getting better. It has been so long since our whole family was healthy at the same time.

Months ago I purchased tickets for all of us to see a Pete the Cat performance. Apparently it already happened. I am shocked that I didn’t put it in my calendar. That is very unlike me. I am just going to tell myself that one or all of us was probably sick whenever it happened and we wouldn’t have been able to go anyway. 

In past years at this time I was often stressing about what school decision to make for Sarah’s next year. It is such a relief that this year I do not need to figure out any changes for either girl. I am thrilled with the school situations for both. I do get to figure out camps for the summer and how to hopefully teach the girls to swim (myself or through lessons). I am attempting to trust that this will all fall into place easily.

Yesterday Sarah’s teacher called me from school and then let Sarah talk to me. I love love love that Sarah wanted to talk to me. I love love love that her teacher supported her in such a way. 

When all of us were sick we missed SR time, vision therapy, and OT. This week we are back in the groove with all of them and Sarah is getting Anat Baniel Method lessons this weekend. When I was sick so many things felt impossible. It is a relief that now things such as dishes or getting the kids to and from school or appointments seem almost trivial instead of mountainously difficult.

There was a moment a few weeks ago that I forgot to write about. The girls were asleep. Carl and I were reading in our bedroom with the door closed and the light on. Luckily we also had turned on our bedside lamps. Sarah sleepily opened the door, looked at us, turned out the overhead light, and went back to her room. It felt really hilarious in the moment, especially since she didn’t say a word.

Much love to all of you. I hope you are all well.

February 12

It was another week of sickness. We did make it to Sarah’s birthday party and that went well but I was wiped out afterward and had a couple more very hard days. Sarah had a swollen cheek which the doctor thinks was from biting it accidentally while eating, as we all have done at one time or another, and then re-biting it accidentally while it was swollen and then it got infected. So she is on antibiotics for the third time in the last couple of months and I’m feeling rather discouraged about her internal system being set-back quite a bit from whatever progress we had made. It takes a long time of being on probiotics to make up for one round of antibiotics. The antibiotics have already notably gotten her regular digestive rhythm a bit out of whack. Anyway, we were all home a lot and I rested a lot and let the girls have unlimited screen time. I can’t remember another time in my life when I have been so sick for so long. It has felt brutal and I feel physically, mentally, and emotionally worn out. I am slowly on the mend though and am able to be up and about and functioning in my life a bit. I even was able to go to DC Saturday-Sunday to hang out with friends in my bookless-meetless group. We used to be part of a book group and then it stopped working for us to read books in a coordinated fashion and then it stopped working for us to meet regularly at all and people now live all over. Every once in a while we all meet in DC and even though I was at low ebb it was still wonderful to be part of it.

Truth be told, as soon as I walked in the door from my trip and hugged Carl I burst into big sobs. I felt so overwhelmed by the idea of re-entering life and needing to do even the smallest things to prepare the girls for school tomorrow. I just wanted to crawl into bed. After several minutes of deep crying (and deep coughing) I felt much clearer and could even consider functioning without it seeming totally overwhelming.

Anyway, I am feeling relatively good now, all things considered. Still sick, but so much better than before. Still daunted by all that has piled up in the wake of my being out of commission for so many days. But I feel more like myself than I have in a couple of weeks, so that is something.

I hope that all of you are well.

February 4

Sickness abounds. Last weekend I was very sick and missed Sarah's party for grown ups. Luckily Sonia came over to help with everything from dishes to laundry to kids to preparing for Monday so between her and Carl everything was taken care of, including me. 

Tuesday both girls were home with pink eye and I had a bad cold plus an upset digestive system. Then I found out a teacher whom I loved from high school died. Then we found out that the Pittsburgh water supply was possibly compromised and we had to boil it before using it. Those were too many things and I started crying. Sarah came up and listened to me earnestly, as she so often does, and then when I came back from the bathroom she asked "mom are you feeling better now?" What grown up moments!

Now both girls have colds on top of the pink eye, Carl has a cold, and I am still not 100%. Sarah has her birthday party for kids tomorrow and I am hoping we are all well enough to enjoy it. This has felt like an especially hard week.

Carl took Sarah to a party for a classmate today at a roller-skating rink. Sarah did a wonderful job and Carl reports that he still has his skills from 25 years ago. Amy and I stayed home and snuggled. 

I hope you are all well!