December 16

A little over a week ago, Carl’s grandfather died. He had a full and wonderful 99 years. We waited until that weekend to tell the girls because we weren’t sure how they would react. Amy seemed a bit sad, mainly from understanding how Carl was feeling and because she could relate to how she loves her grandparents. Sarah didn’t seem sad, though she probably remembers her Great Grandpa H more than Amy does. Sarah had recently taken a picture of him to her school for Veterans Day.

This past week had three performances. The girls had their first piano recital. It was wonderful. Sarah paused in the middle to say hi to her teacher and then again to comment on her teacher’s polka dot tights. Amy played beautifully, including figuring out how to reach the pedal, stretching her leg long. The church had a feature that I wish all performance places had. It was a “cry room” where you could go with a kid and they could talk or cry or whatever but not be heard. Meanwhile, there was a window and speakers so the parents could still hear and see what was happening in the main area. Sarah spent some of her time in the cry room playing while another mom was in there with her kid. I love what a supportive and relaxed framework their teacher creates for all aspects of the piano experience. Neither girl was at all nervous about the recital.

Monday night Sarah had her school Christmas program. In contrast to last year, this year we could see her and hear everything. Sarah opened the evening by saying, “Welcome to our play.” During rehearsal she first asked if everyone could hear her.  Apparently everyone found this funny. I wish she had said that for the actual performance as well because her line got lost in the general noise, while serving to quiet everyone for the next person’s line. Still, it is pretty amazing that she was up on stage and speaking to a gym packed full of people, with poise and clarity. For many of the songs she seemed to be lost in the sights and sounds, standing on stage but not actually singing. We realized that next year we should find out what songs will be sung so we can practice with her a million times. When it was time to sing “Silent Night,” which she has been singing for years, she easily and fully participated. One other moment of note was on our walk to her performance. Amy complimented Sarah’s dress and Sarah responded, “thanks! I got it at A Child’s Wardrobe.” 

Tuesday night Amy had her school’s Winter Concert. The feel of the two school programs is so different. Both are wonderful, but Sarah’s is definitely more of a traditional and religious program while Amy’s is more of a party. The kids have dance moves for all of the pieces and some come in costume. It was wonderful watching Amy sing and dance fully and joyfully. Amy’s class sang three songs: one for Christmas, one for Chanukah, and one for Kwanzaa.

Wednesday morning started dark and early (5:40) as all school mornings do in these winter months. After the two previous late nights, it was not an easy morning, to put it mildly. The only good that came from it was talking with Carl about it, after feeling like I handled it abominably (trying to forcefully change a screaming fighting Sarah out of her pajamas and screaming at her to go have breakfast). He commented that she wasn’t really awake yet during those moments. That was a revelation. I am a morning person and a person who tends to wake easily at any time, especially when there is a schedule deadline to meet so I am boosted by adrenaline. Carl tends to struggle more to fully wake up, so he can relate to Sarah. I somehow thought that because her eyes were open and she was talking she was awake. Realizing that I was wrong was so helpful. Eye-opening, if you will. It changes how I will approach difficult mornings in the future, focusing more on what I could do to actually wake her fully.

What I didn’t realized until later in the day Wednesday was that Sarah and I were both getting colds, which may have contributed to our rough morning. Or maybe our rough morning predisposed us to colds. I honestly thought our sore throats might have been due to our yelling. Thursday she needed to stay home from school. If she hadn’t then I would have gone to work, but as it was I slept for most of the day. We are both on the mend, but such things can take a while. I can’t give Sarah some of the go-to decongestants or cough-suppressants because they lower the seizure threshold. She was fine for school on Friday, though, and it was the easiest morning we have had in a while. 

I have had a few fleeting moments where I have hope for my own ability to change. I have been able to remind myself ahead of time at least twice that it is actually ok if we are late to something or later than I planned and that it is better to be late than yell at my loved ones. It matters to notice this ahead of time, which somehow seems funny as it relates to lateness. I have also had a small handful of times when I normally would tighten against Sarah’s temper and upset, but I have instead been able to feel compassion and soften towards her. This isn’t the whole ball game by a long shot, but it is a start. Or it is a moment. Hopefully I can have more such moments. With the Alexander Technique I am fully aware that I may need to remind myself of something, like not tensing my neck, 60 times a minute. I think perhaps with Sarah and school mornings I need to remind myself 60 times a minute that it is ok to be late or miss the bus for almost all mornings.

Lots of love to all of you. May you be awake if your eyes are open.

December 9

The week has felt frustrating regarding Sarah getting ready for school in the morning or going to get Amy in the afternoon. Sarah was more resistant about it than she has been in a while. I started to feel like Scrooge or the Grinch, just hating Christmas because that is what she is asking about and wanting all the time, instead of doing what needs to be done. Yesterday also felt rough between us. It was extremely difficult to get her out of the bath and my hearing may have been damaged due to her volume. In response to such loud screaming I picked her up out of the tub and tweaked something in my back. It feels fine today but at the time it didn’t help the situation. It always feels extra frustrating when I observe myself as if from a far, disliking what is coming out of my mouth or my actions but feeling almost like it isn’t me and that I’m powerless to change it once it is set in motion. There are times when I feel like I’m throwing an ongoing resistant tantrum about her and the fact that she has a developmental delay/disability/special needs, however you want to describe it. It is as if I’m fighting my life and unfortunately it manifests through fighting her and having less room for her usual questions or ways of being. As Elephant and Piggie would say, “We will try again!” Today is a new day, this week is a new week, and so far so good. It helps that we have nowhere to be for a few hours so it is a relaxed morning.

There were some notable highlights from the week. At our neighborhood holiday party, Sarah worked on a jigsaw puzzle by herself and got some pieces in place. We don’t know how much of the puzzle was completed before she sat down to work on it, but those have never been her forte so it is exciting that she wanted to do it. The holiday party was also the easiest yet, with both girls being fairly independent and playing in the kids’ room on their own. I made cupcakes for the party but didn’t bring a dinner item for Sarah, assuming there would be options that she could have. Technically yes, there were things she could have eaten, but most she wouldn’t have wanted. I was starting to feel worried and like I had messed up by not bringing a hot dog for her when my friend set down a container of hummus with some pita! Whew! Thank goodness. This was a good reminder never to assume and always to come with a backup option for Sarah.

During her swim lesson, Sarah did the best floating with the calmest limbs that I have ever seen her do. Her new teacher seems to be quite effective with coaching her. We are still working on her not opening her mouth under water. As it is she has to spit out water every time she surfaces from the teacher moving her under the water. She looks sort of like a fountain when she spits.

For the past few months our upstairs bathroom has been mostly unusable while being redone. Friday night it became fully usable again! Normally Sarah doesn’t like baths and she especially doesn’t like showers. She manages, but there is often resistance to some degree, mainly about washing her hair. The new tub is deeper than our old one and makes bubbles. The girls loved it. They didn’t want to get out. Sarah especially didn’t want to get out. Carl said that washing her hair was even slightly easier given the movable hand-held shower head. After I recovered from her amount of screaming about getting out of the tub, I realized how amazing it was that her screaming is now about not wanting the bath to end. Throughout the rest of the day she kept asking when she could have another bath.

We got our Christmas tree yesterday. It was so cold that the girls just wanted to stay by the fire rather than help pick out a tree. Until it was time to go, and then they wanted to play. In past years, Sarah has decorated our trees a tiny bit but usually gives up after a few ornaments, perhaps out of frustration at the difficulty of getting them to stay. Or maybe she just got bored. I don’t know. Yesterday she participated and hung ornaments the whole time! When we were done she started taking ornaments off the tree and putting them on again, saying she wanted to try again. We have many branches with clusters of 5 or more ornaments. It was really lovely having the whole family decorating together the whole time. 

Amy received a treat this morning when our cat Olivia climbed into her lap and snuggled for several minutes. Amy loves cats immensely in general, but she specifically loves Olivia. We cannot leave for her school in the morning until she has given Olivia a goodbye snuggle. 

I get asked at least once a week if the girls are twins. Seeing them in front of the tree together with their matching haircuts and almost identical height, I completely understand the question. I doubt that anyone thinks they are identical twins, but I could certainly believe fraternal. People are then amazed to learn of the 4 years between them.

May you have some super awesome thing to balance any frustrations. If you are fighting your life, may you notice. If you have wonderful moments, may you notice. May you notice that you are loved.

December 2

Sarah loves bus shelters and some of the ads in them. She especially loves the Molyneaux carpet ad with a kid wearing a green shirt on a green carpet. Amy’s favorite ad has a cat playing a keyboard. A few months ago, Sarah’s favorite bus shelter was taken away! It was at a corner near the playground we walk to so this was very disappointing. Recently, a new (used) bus shelter was installed. Sarah’s favorite ad wasn’t there, but Amy’s was. We went there yesterday and they had fun pretending to sit on a bench that wasn’t there. Sarah told me she was a goof and a half, which is what I often tell her and is so true. Sarah had fun for the entire time. Amy really wanted Sarah to play school her way and got upset when Sarah wouldn’t. To Amy’s credit, she was much more flexible than usual. She got stuck though when it came to math. She gave Sarah a math problem on a piece of paper and Sarah didn’t want to do it. I explained that maybe 6+4 was too hard for Sarah. Amy couldn’t understand this because to her it is the easiest thing ever. I tried pointing out that she didn’t always know the answer and that when she was in preschool or kindergarten it might have seemed hard. Math comes so easily for Amy and she loves it. Math is one of Sarah’s most challenging subjects and it does not come easily at all. Still, I will see the success in Amy’s flexibility of allowing the school room to sometimes be in the bus shelter. 

Responding to Sarah’s love of restaurants and being a waitress, her teacher has created a menu of options. The options are reading book, reading activity, spelling book, spelling activity, math book, and math activity. Apparently, Sarah loves this and studies it seriously before deciding.

Her teacher also says she has been quite independent about changing out of her boots and into her sneakers when she arrives at school, possibly because she is so proud of her ability to tie her shoes. As she should be! It still amazes me. 

Sarah’s favorite show to watch these days is the Turkey Dance or similar dances led by a person on youtube. I love that this gets her up and moving a bit more.

Recently I spoke with someone who is interested in the Son-Rise Program. I began looking back through my updates in search of a video of me playing with Sarah. I never found one, though I know we have such recordings. I did find a video of M. playing with Sarah. M is a specialist who did outreaches with us. It was amazing to see such a young Sarah who was still so much learning to speak. It was amazing to read bits of updates from years ago. I realize that with any person it can be stunning to have proof of the passage of time. Somehow it boggles my mind more regarding Sarah because I didn’t take anything for granted the way I did with Amy. Of course Amy would learn to crawl, walk, talk, eat, etc. With Sarah we really didn’t know. On the one had we believed fervently, determinedly, and passionately. On the other hand we just had no way of knowing and each skill was much more hard won. It feels the same looking ahead. I have no idea if she will be able to do certain things, but I can still hope and work towards them. I know I write about this kind of thing often. It really never gets old for me.  It still feels like a miracle. Noticing how far we have come also helps me handle any current struggles with a bit more grace (maybe. sometimes).

May you notice how far you have come.

November 25

Last weekend Sarah and Amy had a group piano class. This is a small, informal recital with the other piano students in attendance. Sarah had no interest in the games to get to know the other students. She wanted to play the piano! When it was her turn she announced each piece before she played it. After her originally planned pieces she wanted to keep going! Her teacher had to stop her from just going and going. She probably would have played everything she knew if we let her. We joke that when it is time for her recital we may need a long hook to pull her off the stage. When it was Amy’s turn, Amy had beautiful poise, grace, and presence. I had thought she might be nervous but she wasn’t at all. When she took her bow at the beginning and end, she took her time and made eye contact with her audience. 

Sarah is increasingly interested in helping in the kitchen. Sometimes this works and sometimes it doesn’t. Yesterday she heated left-over mashed cauliflower and mashed sweet potatoes, saying they were mac and cheese, and served them to herself and Amy. Earlier in the week she made scrambled eggs for multiple people for dinner. Carl was the supervisor in both situations. I think he is often a bit more relaxed about Sarah’s kitchen help than I am. 

Sarah loves wearing pajamas and often wants to wear them to school. Her reasoning lately is that they are “comfy cozy comfy cozy.” When Grandma delivered the new pajamas she recently made for the girls (cats for Amy, pandas for Sarah) I kept the pjs hidden until Wednesday after school. I knew that if Sarah had them earlier it would have been impossible to get her dressed for school in the mornings. The girls love the pajamas  and Sarah has worn hers for the better part of the last 82 hours. Hopefully by Tuesday morning she will be willing to part with them for the duration of her school day. 

I think Sarah’s language is getting more fluid and specific, with longer and fuller sentences than she used to use. One morning she explained to me her delay in coming down to breakfast: “I’m getting the snot out of my nose,” and “I am throwing the tissue away in the trash.” Good to know!

Thanksgiving was lovely. We ate lots of good food and had lots of time to play games together. Amy and I played Catopoly to completion. The game is slightly different from Monopoly, but is basically the same. Amy beat me thoroughly.  Sarah even joined for some Catopoly rounds and I realized that adding the total on the dice is a great way for her to practice math. Counting her moves on the board is a great way to count with matching a thing to a number. She is great at counting in general but there isn’t always a one to one correspondence to the items being counted. We also played SET, which is a bit complicated. Carl figured out a simplified, non-competitive version and Sarah was surprisingly interested and adept. SET involves making sets of three cards that have shapes on them. There are diamonds, squiggles, and ovals. They can be purple, red, or green. There are 1, 2, or 3 shapes per card. A given trait must be different on all three cards in a set or it must be the same. For instance, you can have 3 diamond cards in 3 different colors and 3 different numbers or all the same number. It is both easy and complicated. It requires really paying attention and looking at the cards, which are not always Sarah’s strongest skills. Amy found the game super easy at first so she was complaining that it was too easy. Then it became impossibly hard and she wanted no help and nothing to do with the game ever again. So it goes. We all have those moments in various aspects of our lives. I’m sure in the future Amy will be open to trying again. 

We had a couple of walks in the woods on Friday so the girls could skate (in their winter boots) on frozen puddles. They had a great time. Lately it has been impossible to get Sarah out for a walk in the woods and the mere suggestion results in screaming and tears. Once ice skating was involved then our little bear couldn’t get enough of being out in the woods! Until she fell and bumped her elbow in a way that hurt. We took her inside. She was ok but had a lot of feelings about it. She cried for a long time. Then nurse Amy came to play and Sarah was happy and sparkly again, listening to Amy read an Elephant and Piggie book.  

Grandma and Grandpa have been in Pittsburgh often over the past year and I have really loved having them around. My early Christmas present is that Grandpa will be here most of the time from now on. He bought a house that is nearby. Grandma will visit often, but still has work in MN so that will be her home base. I am thrilled that Grandpa will live in Pittsburgh. Last night I was thinking about how lucky I am with the extended family I acquired through Carl. I love my in-laws. All of them. That isn’t to be sneezed at. The girls are thrilled too. Whenever Grandpa arrives, Sarah lights up and zooms over saying “Grandpa!” and then wants to tell him something.

May you feel comfy cozy.

November 18

Yesterday we went as a family to get flu shots. I had debated doing this for a while because I’m always concerned about Sarah’s system not handling it well. She has always been fine, but I think of her body as having more stresses upon it. There are people who come down very definitively on both sides of the vaccine debate. I hover in the middle, believing that some people’s bodies truly aren’t equipped to handle vaccines well so some thoughtful care should be taken. I’m also scared of Sarah getting the flu. When she got sick over Halloween I was scared that I had made a mistake in not getting a flu shot for her. I also read something from a friend about why she got a flu shot. She explained that she wants to help the herd, knowing that some people can’t/shouldn’t get the flu shot so that if those of us who can do so then we protect the herd better. Anyway, off we went. It was a very long wait and a very short procedure. Sarah prepared herself ahead of time by playing nurse with Carl. They gave each other shots and then pretended to get ice cream at Millie’s to recover. When it came time for the actual shot, Sarah scrunched her eyes and said, “thinking happy thoughts! happy thoughts!.” Not a tear or a scream. She handled it beautifully. Amy was scared and crying but handled it no less beautifully. I want to be careful to celebrate accomplishing a task whether or not one had feelings involved. It is ok to have feelings and tears. It doesn’t mean you didn’t do a great job. Of course, we went to Millie’s to celebrate. Millie’s has several vegan options so it is a favorite place for us to go with Sarah, who can’t have dairy.

This week Sarah and Amy had some wonderful play times together. I still pinch myself a bit that this happens so easily and independently. That used to be something I knew other SR families achieved but it was a dream far off if not impossible for us. One evening they donned swim caps and pretended it was safety week, meaning that they kept their clothes on and practiced rescuing each other. Amy also practiced her laps and assisted Sarah with floating. On multiple other occasions they played Chutes and Ladders all they way through, with no adult intervention. This still seems miraculously amazing. For all of the struggles we may still have or the goals that remain seemingly impossible, here we are. We have already achieved so many things that used to seem unattainable. I liken our progress to someone climbing a mountain who refrains from looking down. However, in our case I think I fare much better if I only look down at what we have accomplished rather than letting myself feel despairing about anything we haven’t surpassed.

Mornings with Sarah have been good, though I feel rather blasphemous when I interrupt her latest diversionary tactic: she wants to sit in her bed by the cross (a present from school) on her wall and pray. She recites the Lord’s Prayer, slurring and rushing through the words that feel too complicated, such as “hallowed.” It is adorable. And, it can’t go on forever because there is a bus to ride! Speaking of the bus… Our driver has been wonderfully reliable. Thursday morning the weather was rainy and sometimes icy. The bus was late but I thought that was understandable. When I called to double check I was told that the driver had been at our house at the usual time and was now headed to Sarah’s school. What?! I know I was tired but how could I have missed seeing her bus when I was standing by the front door as I always do? Was I losing my mind?! Or had we been forgotten? This all seemed so implausible. I hadn’t yet gotten dressed and Amy hadn’t had breakfast. I threw on clothes and tossed some goldfish in a bag for Amy’s breakfast of champions. Off we went, delivering Sarah just a couple of minutes late. Meanwhile, my original plan for the day had included taking Amy to a friend’s house so they could walk her to school while I went to an annual checkup with my headache doctor. Instead, I dropped Amy off with minutes to spare before her school started (after we went to Dunkin Donuts for her second breakfast) and then walked in the door at my doctor’s office at precisely 9am for my 9am appointment. I had a sub arranged for the start of the class I teach on Thursday mornings. I walked in minutes before he was scheduled to leave. Due to general confusion and who knows what because of the weather and the 1 hour delay called at my school, my students hadn’t started anything and several of them arrived when I did, which was late even with the delay. The class still went well and all was accomplished that needed to be, though my shower and teeth brushing was vastly later than is my norm. When Sarah arrived home I asked the driver what had happened in the morning. It turns out he was late starting his route and told the bus company to call me. They didn’t. When I called them they gave me completely incorrect information. He wasn’t yet to our house! At least I wasn’t losing my mind. Now the driver and I exchanged cell phone numbers so we can communicate directly and correctly.

Much love to all of you. Happy thoughts!

November 11

I love how much Sarah loves learning new, sophisticated words. The first three days of this school week she got ready for the day way more easily than usual. There was almost no yelling. I wondered where my child had gone. Then Thursday morning dawned as early as they all do and she was back to her customary times of yelling. After her grumps were out I told her that she had been really ornery. She looked at me with a delighted gleam in her eye and rapturously said, “yes!”

During my SR time with her I didn’t feel particularly connected or inspired but I was able to relax into hanging out together. She wanted to string her loom and then wanted to climb into it. 

I continue to marvel when I watch Sarah tie her shoes. I know it isn’t needed for her to have a successful life, but it is so amazing to see her dexterity. It still feels like a miracle because it used to feel impossible. 

I had a conference with Amy’s teachers and I had Sarah’s IEP meeting. In telling the girls that such meetings were going to happen, I said what I always do... that I am going to meet their teachers and we will talk about how great they (Amy and Sarah) are. This is always true. I love that this is true even when we are discussing Sarah’s challenges and challenging behaviors. 

Reading through the IEP pages felt rather disheartening as usual. I know I have tons of hard moments with Sarah and there are tons of things that I wish were easier. I know they have to write about where she struggles or where she is academically so that they can write goals for how to proceed. Still. There is that very low IQ number or other categorizations that feel yucky. I then have to remind myself to focus on things such as shoe tying or reading. She is reading at a first grade level. That is amazing. What I really appreciate about her team at school is how much they clearly enjoy Sarah, despite any challenges, just as the rest of us who know her do. It felt like a wonderful collaborative effort with flexible, creative thinking about how to proceed. The year began with Sarah joining the regular fourth grade classes for the full time. I think that was too much for her and she is still in a rebound stage. One new thought is that just because she is technically in fourth grade doesn’t mean she can’t join younger classes for things. They will also see about finding a peer buddy for her, possibly a much older one or a slightly younger one. This idea came from recognizing how much she can connect with Amy and learn from Amy, but that she struggles with groups of other kids in terms of connecting. She also does so well with grownups that that is why an older kid might work well. We talked about her love of cooking and being a waitress and that maybe that can factor into her subject lessons and her celebrations for completing some school tasks. 

Mom-Mom and Pop-Pop are visiting at the moment. The girls have loved playing hotel with Mom-Mom. Sarah even agreed to read a book to Mom-Mom, which hasn’t happened much before. As is her wont, she skipped and hurried through the words. Amy sat next to her and told her she had to say each word clearly. Sarah did! At least for a sentence or two. I love how Amy can effectively achieve outcomes that no one else can. 

Mom-Mom and Amy were playing a surprisingly fun game of “are you wearing...?” with questions ranging from “are you wearing socks?” to “are you wearing a kitchen counter?” I was asked if I was wearing a bird. Luckily I took my time before answering, thus remembering that I was in fact wearing my Pigeon socks!

Lots of love to you all. May you have support and flexible thinking for any of your challenges. 

November 4

Sarah seems increasingly attached to Amy as a playmate and companion. Earlier in the week she was so intent on getting extra time with Amy to play hotel or sleepover that Sarah got ready for school the fastest she ever has. While she often plays with (or fights with) Amy, and while she often asks grownups to play certain games with her, this seemed new and significant. 

For my Tuesday night teaching I was excited to wear my skeleton dress. I have been waiting to teach on a day close to Halloween for years! The last time I dressed up for a Halloween at massage school was about 19 years ago when I was a student. I went as a mussel.

Amy adores our cat Olivia. This week, for the first time ever, Olivia curled up in Amy’s lap.

Our Sarah-Rise volunteers and sitters continue to amaze me as much as ever with their creativity. Sc made a pretend fire with Sarah by making a pile of wooden marble run pieces with a cut-out paper flame in the middle. 

For Halloween, Sarah’s school doesn’t have fourth graders get in costume. (What?! Why?! They are not too old to dress up!!) They do have a party where kids exchange treats with their classmates. Sarah came home with the biggest haul ever. The bag was laughably heavy. I spent many minutes swapping in things that she could eat and adding what she couldn’t to a bag for Amy or our bucket of candy to hand out to trick or treaters. Unfortunately, Sarah was feeling sick. She stayed home instead of going trick or treating. She wasn’t even sad about missing it, which shows how sick she was. She stayed home on Thursday, in bed most of the day. Thursday was also the start of a new neuromuscular class for me to teach so I was extremely grateful that my father-in-law was able to babysit. Asking someone to hang out with your sick kid is a big deal, and for them to accept is an even bigger deal. Wednesday night I was anxious about Sarah’s sickness, worrying that it might be something dire and that in some way I had failed as a parent in my decisions about her health. Our cat also has something going on health-wise (probably an allergy of some sort) and I was anxious about that, concerned about how intensely heartbroken Amy will be if she dies. I really didn’t sleep well on Wednesday night, so when I came home from teaching on Thursday morning I was exhausted. I napped and then felt ready to work that night. Friday, Sarah needed to stay home again, even though she was notably improved. I spent half of the day in bed too and that helped me feel much better. 

When any of us are sick I tend to let technology use be unlimited. Yesterday it was limited because all of us are well (except the cat). By the end of the day there was much more of a mess throughout the house. At first I was grumpy, but then I realized that having toys spread all over is a wonderful sign that the girls have been playing and feeling good.