December 30

At 11:45pm pm on Christmas Eve, Sarah started asking if it was time to get up and open presents. This continued every hour or so until 5:15am on Christmas when we all got up to begin the day. We had a wonderful day filled with Amy’s new favorite game: Cat Crimes. It involves logic problems that can be solved as a group or individually. You have cardboard cats to place based on the given constraints and you have to determine who ate the fish or knocked over the coffee, etc. Sarah got a large cardboard castle that she and Amy enjoyed. We all had fun with new books, including one of my new favorites, P is for Pterodactyl. Grandpa visited for a bit, which was lovely. We also packed and packed and packed for our trip to MN and WI to visit lots of Carl’s family. 

Overall things have been going very well with travel and seeing relatives. The girls love love love playing with their cousins. There has been hotel pool time (just us), snow time, hot tub time, movies, chasing each other around the house, Pictionary, bowling, a carousel, and a trip to a wonderful Children’s Museum. For many activities Sarah was the driving force and activity director. 

The struggly moments: Amy was very upset about Sarah’s drawing ability or lack thereof during Pictionary. I thought it was amazing that Sarah did it at all. Amy sulked mightily after Sarah drew a frog that Amy thought looked nothing like a frog. Amy is usually so supportive of Sarah’s attempts at things, but Amy also has passionate opinions when it comes to art. Unfortunately this also means that she gets into a funk if her own creations don’t match her vision. Mom-Mom gave us some books that are aimed at helping her be easier on herself about moments when she deems herself not perfect. She is my child though so this may be tough. Yet, if anyone has experience parenting a child with some

rigid perfectionism, it is my mom!

The struggle with Sarah of late is that she yells many sentences just out of the blue or when right next to our ear or at 6am in a hotel. We ask her to be quieter. She asks why. We explain. And around and around we go. This feels extremely frustrating. 

I have had tiny glimmers of insight. One is that if I can remember to stay with myself and not tighten my neck then I get less mad. It is hard to be mad with a free neck. I have also noticed that if I can remember to praise Sarah for something she did well recently, before her behavior went downhill, then she sometimes reverses course back to being amenable.

December 23

When Sarah came home from school on Tuesday, she immediately asked me for striped fabric or fabric on which she could draw stripes. She desperately wanted to make a pair of striped pajamas for Sc. I asked Sarah if it would be ok to instead ask Sc to bring a pair of her own pajamas. She said it would be, but clearly had stripes in mind. I sent a message to Sc, indicating Sarah’s hopes. Almost too perfect to be believed, Sc arrived with a pair of red and white striped pajama bottoms. Sarah was delighted. Her dream came true. Sc is seriously one of the most amazing people I have ever known, and not just because she can produce the perfect striped pajamas on demand. 

We have been marveling of late at Sarah and Amy’s interactions. Carl overheard the following conversation. 
A: why are you wearing your shoes?!
S: I’m going on a trip
A: where are you going?
S: to New Jersey 
A: why New Jersey?
S: to see my family
A: we don’t have family in New Jersey!
S: it’s pretend

Generally, Sarah’s conversational fluidity is ever increasing and it is wonderful to hear. Sarah and I have also had harmonious mornings and good times in general. She is allowing me to sit at the table during breakfast without it derailing her focus or willingness to eat. She even sits on my lap sometimes. 

During her time with G, Sarah drummed on a pretend drum while singing “The Little Drummer Boy.” Sometimes the girls sit together at the piano while Sarah plays “Raccoon’s Lullaby” and they sing a duet. Sometimes they launch into a duet of “Jingle Bells” or they sing and dance to action songs they have learned from YouTube videos. One has lyrics of “I’m so happy, oh so happy.” It makes my heart sing to watch them sing and dance together.

We went to our mountain house and had a wonderful time playing in the snow on Saturday. Gorgeous snow coated everything and we could play on the woods right outside our house! The driveway is steep enough for sledding! We had new Freezy Freakies gloves to remind me of my childhood. It was magical. So was my afternoon of reading on the couch and then napping. 

There is a special place in my heart for mispronunciations, misspeaking, or misspellings of a certain sort. I’m not sure how to categorize it except that they make me laugh till I cry. Recently a friend posted something on Facebook that began with a completely correctly spelled and appropriately used “relishing.” I, however, read it as “re-lishing” as if “lishing” something again. Upon realizing my error I laughed till I cried. I laughed until my abs hurt. I laughed at myself for laughing. It was the best. I am still re-lishing the moment. 

Lots of love to all of you. May you have a moment worthy of relishing no matter how you look at it. 

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.