February 2

We finished painting the girls’ new bedrooms and yesterday began moving them into their rooms. There is still a ton to do before our house is back to some semblance of order, but we made excellent progress. Amy was ecstatic as she went to bed in her own room. Sarah was having none of it and desperately wanted to sleep in our bed, as she had been for the past week. It took many tears and conversations before she stayed in her room. 

Sarah turned 13! She has her party today. One of her favorite moments in her life so far was when we were in Disney a couple of years ago and went to a German restaurant that had a fake sky and polka music and room for dancing. So… for her party we are renting a party room in a German restaurant. We are bringing a keyboard so Grandma can play music and we are bringing the star projector Carl got Sarah for Christmas. There is a dance floor. Sarah has also been asking all year for a Clifford’s Peek-a-Boo cake, because one of her favorite books has that title. Thanks to the internet, I found edible cake and cupcake toppers with a picture of Clifford and “Clifford” and “Peek-a-Boo” printed on them.  So I think we are all set for a wonderful party.

In past years Sarah never really cared much about receiving birthday cards. This year she has been excited to open and read each card. She has also enjoyed talking with Mom-Mom and Pop-Pop and with Grammy and Granddad. She began each call by telling them “Happy Birthday!” She also has spoken often about how her teacher wrote, “Happy Birthday Sarah” on the board. Sarah went to our blackboard and wrote "Happy Birthday Sarah."

Amy created a bug costume for herself out of tissue paper, pipe cleaners, and a headband. Her creativity is amazing.

Carl has been training for a bike race and his training involves a stand that converts his bike into a stationary bike. It then connects online so he pedals through a virtual course with other people. Sarah has been fascinated. Carl got the girls a Zwift set up of their own and a new bike, since they have outgrown theirs. They pedal through various courses while watching a virtual self on the tv screen. This has taken over our living room and is well worth it. Sarah probably spent multiple hours biking yesterday. Amy did a lot too. I will even do some if we switch it to my bike. Of all the various things we have tried to get Sarah to be more active, this is the most successful so far. 

January 26

It has begun. This past Monday we emptied what used to be the Sarah-Rise room and what used to be the girls’ shared bedroom. Carl spent time each night this week working on wall and ceiling repair. Yesterday we did more wall repair, sanding, vacuuming, wall-cleaning, and taping. Amy loved spackling and Sarah was an expert unscrewer and sander. Today, the actual painting begins. We are eager to be able to put the house back in order. Right now the twin mattresses are in the living room, the girls’ dressers are in the master bedroom, and all of the books are in the family room. Many other things are all over the house in various places. Most notable in this experience is that when the girls change clothes they leave their discards flung willy nilly around our bedroom! This shouldn’t be a surprise given how they treated their bedroom, but somehow it is still a surprise. The actual sleeping arrangement is also different from what we first planned. Plan 1 was that Sarah and Amy would sleep in the living room on their mattresses. Plan 2 was that they would sleep in our bed and Carl and I would sleep downstairs so that we could stay up past their bedtime and I wouldn’t have a light bandit turning out the kitchen lights in the morning. Plan Actuality is that Sarah sleeps upstairs in my bed with Carl. I sleep downstairs in Sarah’s bed next to Amy. This is working out fine, but I do look forward to having the house back in order and sleeping in my own bed in my own bedroom, where I can shut a door when the cat wants breakfast before I want to give it to her.

Overall the week went fairly well, but I was quite glad to have Carl around in the mornings to help get Sarah ready for school. She was fine with getting up and having breakfast but she really dug her heels in about getting dressed. I got to become more aware of my buttons such as if I’m not able to finish speaking, especially to explain something rational. I also took notes on how Carl would redirect her attention completely, such as pausing the fight over getting dressed to go show Sarah progress on wall-repair. Then he asked her which pants she wanted to wear and she got dressed!

Gymnastics went well and Sarah was more open to some of my input regarding backbends and cartwheels. With each thing I think she needs to feel certain movements in her body as separate from the full action. She let me do a little work with her arms when she was just standing and when she was on her back, helping open her shoulders more and get her arms straight. She also copied a bit of my standing leg-body rock that should be the start of a cartwheel, because somehow the original way she learned resulted in her plunking both hands down simultaneously and hopping both legs to one side in tandem. Sometimes the teachers will take time to help her with a specific skill, but they either haven’t noticed her cartwheel attempt or don’t know how to fix it.

Sarah is into tigers at the moment and likes to exchange pleasant roars while snuggling or giving me a chin press. She calls me Mommy Tiger and wants me to call her Baby Tiger. She also likes saying she is a Lefty Loosey and pretending to unscrew things or people. I overheard her telling Sc, “Hi, I’m Mrs. Lefty Loosey, the teacher.” I love how Sarah’s mind works. I love her creativity and humor. 

Amy seemed much more comfortable interacting with Sarah yesterday. It felt more like old times where they could inhabit a space together amicably and even play together. Perhaps it is having a home project or just having all of us at home together for full days. When Carl and I were leaving for the In Bed By Ten dance party last night, Amy had created a swim camp in our family room and was coaching Sarah through jumping off of the sofa arm into the gymnastics pad “water.” Hilariously, Sarah then actually wormed her way for quite a distance, swimming in that water. Of course they were wearing swim suits and caps for this event. Amy had her goggles too. One has to be prepared.

January 19

Last Sunday after I wrote my update, the day went downhill. Everyone seemed to be clashing with everyone. Amy continues to have times when she has no space for Sarah to be her sister and to be Sarah. Walking most of the way home independently has helped, but then the anger towards Sarah is there as soon as Amy walks in the door, even if Sarah is upstairs! I was feeling overwhelmed and heartbroken about this, but apparently this is common among siblings, especially around this age and especially when one has a disability. Not that that makes it any better, but it helps me worry less about it and take it less personally. 

To help with morning and bedtime difficulties we are going to start the process of giving each girl their own bedroom. I feel sad about them no longer sharing a room. Despite Sarah’s easy “yes” to the idea, I’m also concerned that Sarah won’t like it in actuality. Almost every night she calls out for Amy to get in bed, wanting her there before going to sleep. Still, it is time to make this change. We will take them to pick out paint colors tomorrow. Carl and the girls will do the painting. I decided many years ago that I no longer paint. It is not a good thing for my cluster headaches and can get them out of hibernation. Amy will be moving into what has been the Sarah-Rise room and Sarah will stay in her current bedroom, which will also serve as the future Sarah-Rise room. Amazingly enough, the choices about who would get which room happened smoothly with each girl having a preference that didn’t conflict with the other person’s choice. 

Amy moved up a level in swimming! She is now a Shark 2. Fortunately, that doesn’t mean changing the timing of her lesson.

I have been feeling frustrated in general that I am ineffective with Sarah. If I say to do something then she ignores me or does the opposite. If I say to stop doing something then she often does the thing more loudly and determinedly or starts throwing things. On the plus side, there was a surprising moment yesterday when she came over to me and said, “I love you, Mom” and gave me a kiss. 

Sarah tried getting out of school this Wednesday, perhaps remembering her mental health day from the previous week. This time it didn’t seem like she needed it and I didn’t want to set a precedent for Wednesdays. It was quite difficult getting her ready for the day and I was glad to have Carl’s help. She did eventually get ready in time for her bus, but it was a struggle. 

We have Carl’s cousin and her family visiting and it is wonderful having the kids all together. We had to change some of our plans yesterday due to icy weather and Sarah was extremely upset for at least an hour. It was nice to have the space and time to allow for her upset and that our extended family was comfortable with the upset, thus helping us feel more relaxed about it.

January 12

Sometimes you know a change may come eventually and then suddenly you realize that the time is now. As you know, the walks home from Amy’s school are often fraught with Amy being mad at Sarah for being there, for walking, for existing, for pushing a stroller. It was heartbreaking for me to hear as it got more extreme. We had been talking about Amy becoming a walker, meaning independent, since the start of the year and I decided that the time was now. I still meet her partway and she is surrounded by other kids and teachers for the part she does on her own and we meet where there is a crossing-guard. She seems so grown-up and yet to her this is no big deal, which is a testament to how ready she was to make this change. This means I am away for a short amount of time and Sarah can be on her own watching tv for that short time. I am sad to lose the exercise for Sarah and me, but I am pleased to gain more peace. I also get time with Sarah when she gets home where we can just connect and do chin-presses and snuggles because we aren’t needing to rush out the door. Or, as the case was on Friday, we had time for Sarah to do her science experiment for school. She was eager to do it immediately since it involved drinking different juices and writing down what flavor she thought they were. She was very clear that she didn’t want to have anyone else participate, though she had enough juice. 

Wednesday morning when I turned on the hall lights to summon the Light Bandit (aka Sarah) she started yelling and protesting and saying she wanted to stay home. While she does often have some small level of protest about getting dressed, her Light Bandit times are usually playful and happy. She had a cough that had been lasting for a while so I thought we should get it checked anyway and my plans were such that she could come too. As soon as I said she could stay home then she seemed quite well and would happily listen to music and dance. As soon as I would suggest that it seemed like she was well then her yelling would commence. I decided she needed a mental health day, just as my mom used to let me have when I was younger. We agreed that she would go to school easily on Thursday since I couldn’t stay home then. We had a lovely day together and Thursday morning was mostly easy. The side note to this story is that Amy was quite mad about Sarah staying home on Wednesday. Not that Amy wanted to stay home, but that she believed Sarah was totally well and should go to school. 

Sarah and I had a rough time of things Friday evening and Amy rose to the occasion, being the kindest daughter and sister you could imagine. It was nice to see that that part of her is still there. Earlier in the week, following my mom’s suggestion, I had some quiet time just with Amy to talk about her feelings of anger and hatred towards Sarah. Usually I have been in a tight mode when she says things around Sarah and I basically try to shut her expression of feelings down. When it was just us I apologized and said she could tell me anything and it was important to notice all of her feelings, but that I still didn’t want her to say super mean things around Sarah. We talked about how Amy is both the younger and the older sister and how hard that is and how hard it can be to be Sarah’s sister. We talked about Sarah’s various diagnoses and what they mean and how they explain some of her behavior. It felt like a really great connection and that Amy had more understanding than when I have tried talking about such things in the past. I am noticing that two important kid-connection moments happened because of my mom’s example and suggestion. So many people grow up wanting to be different than their parents. I have always hoped to be as good a parent as mine were to me. That is pretty deeply amazingly wonderful.

Amy is selling girl scout cookies and is so grown up!! She went out on her own to houses where we know the occupants. Then Sarah and I joined her for the unknown houses, but I stood back at the sidewalk. She is so clear and confident, asking if people want to buy or donate cookies. Speaking of which, it is possible to order online and have them shipped to you. If you want to order, go to https://digitalcookie.girlscouts.org/scout/amy112560

Yesterday Carl took the girls and some neighborhood friends to the playground. It was heartwarming to see Sarah on her scooter saying she was ready to go to the park with her friends. It is quite a blessing to have so many kids who easily welcome Sarah into the fold. While they may not seek her out individually, I never feel like they shun her or shut her out. They try to include her.

Sarah’s phone fervor has diminished greatly. So if you were among those who so kindly and enthusiastically offered that she could call you, don’t take it personally if you don’t receive a call. She doesn’t call me anymore either.

Carl and I had the following conversation that had us cracking up about parenting and book titles. 

Me: Oh…just like in the book Boom Chicka Rock. Isn’t that the book with the “Boom chicka rock chicka rock chicka boom, everybody rock around the room” with the mice and the cat and the clock?

Carl: I thought Boom Chicka Rock was about the alphabet.

Me: That’s Chicka Chicka Boom Boom. Not to be confused with Chicky Chicky Chook Chook.

January 5

Amy has braces! She picked clear brackets with teal rubber bands holding the wire on the brackets. As you can imagine, her first few days were rather miserable at meal time. Even mac and cheese was too uncomfortable to eat, so she had lots of applesauce and mashed potatoes. By the time school started she was able to do toast if it was cut into small pieces. She won’t be able to eat an apple that isn’t cut for as long as the braces stay on, but I don’t think this will upset her lifestyle. 

Carl and I spent New Years’ Eve in downtown Pittsburgh, staying overnight in a hotel and finishing our date with the last Star Wars movie. This was a tremendously wonderful gift of time from Grandpa. 

At the moment Grandma and Grandpa are in charge, taking the girls to fun new playgrounds and bakeries and the oldest house in Pittsburgh. Carl and I are in California for a wedding, enjoying the gorgeous views and the excellent company of some of our college friends. Carl also got us a fun rental car, reminiscent of the Mustang convertible we rented on part of our honeymoon, when we were also in California. 

Lastly, we have a new phone. Not a new number, just a new phone. The old kind that plugs into the wall and has a coil connected to the part you hold to your head. We wanted something that the girls could use if there was an emergency and they needed to call 911. Our previous phone had number buttons that were too hard to press. The new phone is programmable so you can put a small picture on the button to correspond the programmed number. We haven’t yet printed tiny pictures but I did write the names of select people that the girls can call. Sarah looooves this. Amy has made a few calls and liked it, but Sarah loves going to her office (my desk) to make calls. She often calls Carl or me when we are in a different part of the house (or standing next to her). She also made many calls to Mom-Mom/Pop-Pop and Grammy/Granddad. As Mom-Mom has pointed out, this is an amazing tool for her to connect with people in a new way, a way in which she has to maybe work a bit harder to make sure she is very clear with her speech. This is also good for learning phone etiquette, like how to leave a message and how to say goodbye rather than hanging up on the person. Now the girls might also receive calls, but since the phone doesn’t have caller ID it is back to the old days and sometimes Sarah answers when it is a telemarketer. We have to work on how to handle that too. For instance, recently I was next to her when she answered the phone and I heard her saying that she was me, so I quickly took over. 

For those of you that know Sarah personally, if you would like to be part of Sarah’s phone connection and education by possibly receiving a call, let me know! I will provide a list of numbers for her, because it is also a skill to dial a whole number rather than just two buttons. I will endeavor to be nearby when she calls, but I can’t guarantee it. We do enforce reasonable calling hours. Another way you could participate is to call our home number and ask for me or Carl so that Sarah learns how to say, “hold on a minute, I will get them.” If you don’t want to do any of this that is totally ok. Only do so if you think it sounds like fun. 

December 29

When I wrote a week ago I didn’t mention that we had just had a harrowing morning moment with Sarah. We were in Florida for vacation and our first day and a half went quite smoothly, in part because we were exceedingly flexible with our timing and the kids didn’t even need to agree on what to do. Sunday morning we had a scheduled trip to the Everglades and Sarah was not having it. Unfortunately this was at 6am and involved her screaming a lot, to the dismay of our hotel neighbors who knocked on our door twice because of the noise. It turned out that the scheduled trip was cancelled anyway because of the weather, but we didn’t know that until Sarah’s personal storm had passed and we had given up on the plans anyway. Amy and I brought breakfast to the room and then she and Carl went out for a hike in the rain in the Everglades anyway. I stayed with Sarah, who napped for three hours. I don’t know if the need for three hours of sleep was behind her massive upset or if the upset wore her out to that degree. Either way, we (re)learned that whenever possible it is best not to have timed things in the morning. Or maybe at all. Except then the next day the girls went to the scheduled Kids Camp at the hotel and going there was no problem at all. 

Difficult moments aside, overall we had a wonderful time. Sarah’s pool time was amazing. She spent all of her time ducking her head under water and moving her limbs and practicing not getting water in her mouth. I would even call it swimming, with a need for some refining of technique. This is huge and amazing. She was wearing her goggles and tossing a dive ring for herself to retrieve. Collectively she spent hours doing this. She also loved playing on the beach, watching the waves. Amy loved the pool time and collecting shells and eating delicious pancakes for breakfast. It was quite windy and there were more gulls and terns and pelicans than I have ever seen on a beach. We made the mistake of attempting to have a snack while on the beach, but were immediately accosted by swarming gulls who wouldn’t leave us alone until I hid the bag of food under my shirt. It was a little scary. 

After our time in Florida we flew to Philadelphia, luckily allowing plenty of time before our flight. We had time for the valet parking service to temporarily (30 min) lose our car and for Sarah’s antiseizure meds to set off a security alert that meant a pat-down for me, which somehow triggered another alarm on their chemical-testing wand, which meant taking me to a room for another pat-down, which didn’t set off an alarm. I was sent on my way with the medication. 

We had a wonderful time in Philly with Mom-Mom and Pop-Pop and a wonderful time in Wilmington with Grammy and Granddad and uncles B and B. Somehow Santa knew to fill stockings in our hotel but bring the rest of the presents to Mom-Mom and Pop-Pop’s house. It is hard to know how much belief there is in Santa, since the girls also clearly know that they give and receive presents to and from people. 

Carl got the girls step-counters for Christmas. At first Amy was walking all over to get more steps. Once she realized the measurements aren’t perfect she got mad and hasn’t really worn it much since. Sarah only wore hers once, but it was a memorable afternoon because she and Amy were running laps around a small track to prepare for the kids marathon in May. They were eager to check their step count after each lap and to outdo the other. Sarah’s stamina was impressive and surprising. 

It is interesting how within a person and a day there can be such intensely frustrating moments and such intensely amazing moments. 

Amy’s art continues to amaze me. This morning she drew a portrait of her favorite stuffed animal, complete with many specific details. She also became Grammy’s special mealtime helper, in a way that reminded me of my younger years helping at my grandparents’ house. 

December 22

Amy was much better from her cough by the time her school’s winter concert came around on Wednesday night. Carl and I also had tickets to see Straight No Chaser so we had a double header of an evening. Our sitter A. came to Amy’s concert to be ready to take the girls home afterward while Carl and I went downtown. Usually the only way to have Sarah sit quietly for these concerts is to let her have her iPod. A. has some magic powers and sat and talked with Sarah while they watched the concert!

Sarah lost a tooth at school and it was truly lost. Amy suggested that Sarah could write a letter to the tooth fairy, as Amy had done in the past. Amy wrote the letter with blanks for Sarah to complete with the general tooth location and her name. This was apparently sufficient for the tooth fairy!

Sc bequeathed her red and white striped pajamas to Sarah. They are big on Sarah, but that has never stopped Sarah before! Amazingly, they are the same brand as the striped shirt and hat that I got for Sarah recently. This is great because then I can wash one shirt at a time without protest. 

I finished teaching my last evening course. I will occasionally teach an evening class but not an 18 week course. I loved my students, but it was hard for me to get home at 11pm and wake up at 5:30am the next day. I will now only teach a morning course, in addition to my Alexander teaching that gets sprinkled around at varying days and times. I have been feeling very grateful for having jobs that I love, wonderful students and clients, and that part of my job involves receiving massages from my students!

I hope you all had snuggly solstices.