Cutting with a Knife with Hemiplegia


At age 5, Mia was able to peel and cut a cucumber independently with some supervision. She has more limited use of her right hand due to a stroke at birth and resulting hemiplegia. Notice how she’s using her right thumb to hold the cucumber in place. For kids and adults with more limited use of their affected hand, cutting boards are available that hold things in place.

Today, at age 8, she used a utility knife to cut through cardboard for a school project. I don’t have a picture of that because I was supervising a bit more closely.


Monkey Bars at 5 and 8

Mia mastered lower monkey bars when she was turning four. Here she is traversing the high ones for the first time as an almost six year old. And, about six months after this picture, she did her improvisational routine on the parallel bars. She continues to enjoy all kinds of climbing, on play structures, rock walls, and natural environments. Hanging from bars or rings and bearing weight on both arms are both very important for developing and maintaining strength in her right hand and arm. Also, the problem solving, coordination, and tenacity to truly master these play structures is fantastic.

Here’s today’s video of her crossing the same monkey bars in an almost effortless way at age 8, almost 9, so 3 years after the picture above.

Playing Piano with Right Hemiplegia

Imagine that you are learning to play piano and your left hand and fingers seem to follow your brain’s plan with ease but your right hand and fingers do not. So it is for Mia, practicing playing piano. She uses her left hand to help position the fingers of her right hand on the keys. Messages travel fairly effectively to Thumbkin and Pointer on Righty but the other three fingers are much tougher to control. Mia was five years old at the time of this picture. More recently, she tried ukulele, but that’ll be another post.

Spontaneous Supination to Receive Cherry Blossoms


Spontaneous supination (palm up) with both hands. My girls were playing with cherry blossom petals, and Mia offered her palms up to receive the petals from her sister. Supination has been one of Mia’s goals since she was an infant as she had a stroke at birth. Many people with hemiplegia struggle to turn the palm of their affected hand upwards. In the picture above, Mia is 5 years old and Zoe is 8 years old.

And, because this is the season when the cherry tree blooms in our garden, we use it every year as a way of marking time. So, in 2018, my girls are now 11 and 8. You may notice in the picture below that Zoe is as tall as the cherry tree. And, Mia has both of her arms in a relaxed position by her sides. This was not always easy for her as she used to frequently hold her right arm in a contracted and pronated position with both her elbow and wrist flexed.

Mia loves playing goalie

In the final weekends of the hockey season, Mia got to play goalie for both of her hockey teams, the highlight of her season! As her mom and one of the assistant coaches for her over the past five seasons, it’s been a joy to witness her development, focus, self advocacy, and passion for this position as goalie. While I played hockey through college, I was not a goalie and was never drawn to the position.
Mia started to play hockey when she was four, see Preparing for First Hockey Season. The previous winter, she had skating lessons. Mia’s Skating, Play Detective with Me shows her early skating progress. Pretty early on, in her first season of house league hockey when she was five, Mia started to ask to play goalie whenever she could. Since she’s left handed with a smaller and less functional right hand due to a stroke at birth, we figured out that she needed to hold the goalie stick in her left hand. There was not any beginner equipment in the league locker for this opposite side glove/blocker, “full right”, or if we found it, it was way too big. So, Mia played goalie in her regular hockey gloves.
Mia is incredibly persistent when she wants something so she started to ask for me to buy goalie gloves for her. By December 2015, she was successful in persuading me. I still had my doubts but didn’t voice them to her. Instead, I delighted in that grin, got out some tennis balls and started tossing them at  her.
Pretty soon, she got a chance to wear the new gloves on the ice
The following season, when Mia was seven, she had an opportunity to play on a 10-and-under girts team that actually had players ranging in age from 7 to 12. Mia was the youngest. They played full-ice hockey, 6 vs. 6, including a goalie. Undaunted, when the regular goalie was away, Mia volunteered to play in net. She attended a few goalie clinics that the league offered throughout the season.
Mia kept working on her glove skills for goalie, off-ice. When she attended a week-long constraint therapy camp where they cast her left arm and she focuses on improving functioning with her right arm, her chosen goal was to improve her catching ability with that glove.

Around this time, she also got fitted for a neoprene hand brace to wear on her right hand. We tried having her wear it under her goalie catching glove and it worked for a while to keep it on more consistently, but she eventually said it was not as comfortable with the hand brace so she stopped wearing it.

This 2017-2018 season, Mia played on two teams, a coed Mite A team with just two girls, and an all-girls 8-and-under team. She asked to play goalie whenever she could, though both teams rotated the goalie position among all teammates. In a recent tournament, Mia was picked to play goalie for her girls’ team. And, they got into the playoff round of the tournament due to her lower goals-against total.
Our local hockey program offers to pay half of the cost for private goalie lessons, 30 minute lessons once a week for 20 weeks, and so I signed Mia up for that. The first goalie coach suggested a new helmet and a bigger stick so we went shopping again. Mia’s chest protector is a hand-me-down and her leg pads are on loan from our hockey program. I’ve done surgery on the catching glove multiple times to help Mia get a better fit. Still, several times each practice or game, she comes over to ask me to help put it back on which is a two-person job since she has less strength and dexterity with righty. She’s learned a decent butterfly move.
Initially, the coach we were assigned was a poor fit. He yelled at the Mia and coached 8-year-olds as if they were at a much higher level. He was not making any accommodations for Mia’s limited use of her right hand. It took me a while to sort this out as Mia was getting a ride to these afternoon lessons mostly with our au pair. Then, I went to a lesson and saw Mia in tears. She said she didn’t want to do the private goalie lessons anymore. With her permission, I wrote to the head goalie coach to express my concerns, and we took a break before trying again with a new goalie coach who was thankfully a much better fit. He immediately saw what Mia could and could not do, and gave her homework to watch YouTube videos of Connor Hellebuyck, an NHL player who catches in a nontraditional way. Mia learned a new way to catch, and continues to refine this. She has been so thrilled to catch pucks in games.

Here is Mia in action in some games. She ended the season loving goalie more than ever and tried out for next season to play goalie full time. I’ll still make sure she practices her skating without all the pads but her heart is in goal. She’ll play on a U10 all-girls team, seeing time in net every game.

2000 Days of Reading Aloud

When Zoe was in Kindergarten, I read The Reading Promise and told her about it and she asked how many days that father read to his daughter. 3218 days. Zoe wanted to beat that. We were already reading aloud most nights, but we started to keep track. Well, we’re nearly 2/3 of the way there! It’s hard to believe. Two thousand consecutive days of reading is more than 5.5 years. In that time, both of my children have grown so much. Zoe will finish elementary school in a couple months. She’s eleven, Mia’s nearly nine.

I started reading chapter books when Zoe was four. Mia was not yet two. Zoe’s appetite for listening grew until she could listen for as long as I was willing to read, sometimes hours per day, in two separate sessions, sometimes two books at once, one for each girl. We read some books many times, some series repeatedly. You can see our complete list of books on our reading streak page.

Zoe graduated to listening to audiobooks which meant that I was not the only source of read aloud pleasure. She could listen to five or six hours in a row, and often refused to get out of the car after a long drive as she wanted to finish the book. “Harriet the Spy” and “The Penderwicks” were early listening favorites on audiobook.

With “The Penderwicks in Spring” which was first published in the spring of Zoe’s second grade year, I started to read it aloud, and my pace was too slow for Zoe, not my reading pace itself, but how many pages or chapters we could read in one sitting. It was finite, and her appetite for words was not. She said, “Sorry Mom, I need to read the whole thing.”

Since then, it’s been a bit more challenging to choose books that have staying power for our reading streak. They need to be meaty enough to hold both girls’ interest, but not so compelling that Zoe wants to grab the book out of my hands to race ahead. We learned about the “Swallows and Amazons” series from a reference in “The Penderwicks” and the first book was really slow. These books are set in the 1930s in the Lake District and Norfok Broads areas of England, a pack of kids on sailing, hiking, and camping adventures without many adults in the action. There are references to “Treasure Island”’ and “Robinson Crusoe.” And, now we’re finishing book 5 “Coot Club” and starting book 6 “Pigeon Post.”

Zoe reads independently, devouring books, and I do not attempt to keep track of her reading. She prefers to read in English, historical fiction or sometimes fantasy, though she can read well in Spanish too. Sometimes I get piles of books for her from the library. More often, she requests them herself from the library and if she’s feeling particularly impatient, she’ll read directly through the Libby app. But, she prefers paper books. We still sometimes say that she’s a “book head” or “lost in a book.” The intensity of her reading is such that it’s comparably hard to get her to pause her reading as to get her off of a screen. In one reading binge over the Thanksgiving holiday, I know that she read more than 24 hours in a week because she was reading the “Warriors” series on an app called Epic, and Epic sent me weekly reports on the girls’ reading.

Mia enjoys listening to the books we’re reading now most of the time, but it’s not her special thing. She still has a sense of it being Zoe’s reading streak. So, when Mia and I have time alone together in the evening, she asks to play games. The hard part about games is that it’s more challenging to keep the timeframe in check and it’s not easy to stop a game in the middle. Books can be stopped at a chapter, page, or paragraph break. So, with games, I have to say, “We’ll play three rounds.”

Mia also has become a capable reader in both English and Spanish. Graphic novels are her favorite genre and she reads on her own every day. The most telling sign that Mia’s listening is that she comes out with vocabulary I might not have predicted. The most recent was when she started to say, “dismantled.” I don’t specifically know where or when she learned the word, but it’s now part of her working vocabulary.

I was away for four days last weekend, and I called each day to read aloud to the girls from “Coot Club” to keep the streak going. It was hard for them to have me away, and it was both nice for me to get a break and hard to be away. The reading for minutes together on each of those days over the phone was like a lifeline pouring connection into them, giving them my voice and a bit more of this long-running story to carry them off into sleep. On the day we hit 2000, and I told them we had, they asked me to blog about it, to mark the occasion. So, here I am.

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Four Years of Reading Aloud

Tomorrow marks the four year mark of our reading streak, that’s 1460 consecutive days of reading aloud to my girls, always Zoe, often both Zoe and Mia. Today, Zoe volunteered to help paint faces of kindergarteners at their picnic. The Scholastic book fair ended on Thursday. When Zoe was in kindergarten, I read “The Reading Promise” after buying it at the book fair, and I told her about it. She decided we needed to start our own reading streak. Here we are four years later, still reading.

The list of books this year is notably shorter than in prior years. In part, it’s because the girls are getting older, the books are more challenging and take longer for me to read. In part, it’s because both girls are independent readers, and have a full schedule of activities and also itch for screen time. Still, we read daily aloud. The characters are part of our lives, so in our current run with the Emily of New Moon trilogy, when the kitchen door closes suddenly due to a gust of wind, Zoe proclaims, “The Wind Woman is out there.”

Zoe asks me to read whenever she needs her cup filled. Last night, she asked to go upstairs early to be sure to have time for more than one chapter because the previous night it was too late for that request. Some nights, if we are out doing something fun, we only fit in a page or two. There have been times when I’ve had two read-aloud books running at the same time, one of Mia’s choosing, and one of Zoe’s choosing. There have been times when I was reading both mornings and evenings, daily. Right now, I am only reading in the evenings as part of bedtime, unless it’s my one night each week when I take the night off from bedtime routine and our au pair puts the girls to bed. Those days, I carve out time to read in the morning, even for only 10 minutes.

Their school is performing “Willy Wonka” this year as a bilingual musical. To prepare, we got the 1971 version of the movie from the library and the “Charlie and the Chocolate Factory” book. In one day, we watched the movie and Zoe read the book, in one go, lying on her bed. Zoe calls this style of reading, “being in a book.” Or, we sometimes affectionately talk about her being a book-head. It’s delightful except when she neglects eating and moving for too long and then the reentry can be tough. Zoe now requests her own books from the library on the computer, and finds book references from friends and in books she’s reading to give her ideas of what to read next. If we don’t have a book on hand that Zoe wants to read, we sometimes need to make emergency trips to the library.

Mia often listens, though there have definitely been times when it’s too many words for her. She seems to have caught up in her listening level so I haven’t heard that complaint in a while. She does prefer to use her time in the evenings to play a game with me and Zoe, or to read on her own while these multi month sagas go on and on.

I’ve heard from several parents in the past year who want to encourage their kids to read, and the kids know how to read, but don’t know what to read. This seems to be a common challenge. My first question is, “Are you reading aloud to them?” It’s super common to stop reading aloud when kids seem to outgrow picture books. I still read picture books aloud sometimes in between chapter books. My girls especially enjoy picking up books to read on their own that they’ve already heard me read aloud. The stories are familiar, the choice is a good bet.

My girls have had very different learn-to-read processes. Zoe was not very interested in reading independently until she could read content of interest to her. That clicked in second grade for her and she started to read lots of books quickly. Mia has been more methodical all along, staying the course with some of the easy readers, enjoying the decoding process, and gradually increasing the content as she goes.

There is no end in sight for this reading streak. The Emily series is ending though, so I’ll go get a pile of books from the library after reading some reviews, and see what the girls choose next.

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Mount Monroe, Mount Washington – July 10-11, 2016

Sunday, July 10, 2016

On Sunday, July 10, 2016, Zoe, Mia, and I arrived at the trailhead at the Mount Washington Cog Railway Base Station parking lot just after 10 am, and we were on the trail at 11 am. We were not in a hurry as we understood that the forecast was supposed to be improving throughout the day on Sunday and definitely be better on Monday. We headed up the Ammonousuc Ravine Trail. It was about 50 F, not raining as we started.

Note: Click on any of the pictures to see them in a larger size.


At about 0.3 miles, our trail merged with the one coming from the U.S. Forest Service parking lot. We continued to climb. We took lots of breaks. Roots and rocks are relatively easy going, and there was a lovely sound with the stream all along the trail, with great waterfall views.


The trail got significantly steeper just after Gem Pool, and it was raining too. At that point, we had to put our hiking poles away to use our hands and feet to climb some of the slippery ledge rocks.


There were a few others climbing up or down the Ammonousuc that day, though not very many, most likely because it was not a nice day.

One guy made a big impression on Zoe as he ignored her warning not to step over a rock crevice and he bounded across it.

The girls were faster than me on the big rock scrambles. Mia had led most of the way on Sunday, and they worked together to coach each other on foot and hand holds and also to coach me.

The girls made it to the top of the final ledge section and yelled down that they could see the hut!


We arrived at the Lakes of the Clouds Hut at about 4 pm, so the 2.4 miles and 2300 vertical feet took us about 5 hours.

We were happy to go inside, hang up all of our wet gear, and find our bunks. There was a super eager ten year old girl who was helping the hut croo as we checked in. As it turned out, she was part of a party of ten sharing our fifteen bed bunk room. Her grandfather takes his clan to a hut every year.

The girls had hot chocolate, while I had tea, and we shared some cornbread and some kind of baked bar made by the croo.

The girls made friends, ran around in socks or bare feet as we hadn’t brought any shoes other than our hiking boots. We found our three bunks, built into the wall, all three stacked one above the other. I was on the bottom, Mia in the middle, Zoe on top.

Dinner was served family style at 6 pm, a four course meal: black bean soup, subalpine salad, stuffed shells, broccoli, and lemon poppyseed cake. The hut croo entertained and served us. We sat at a table with the family of ten.

Our final two bunkmates arrived just before dinner, a mother and her fourteen year old daughter.

Zoe found it helpful that we had time to get to know people before we had to go to sleep, so for her it was like sleeping in a room of friends, instead of strangers.

Quiet hours are 9:30 pm to 6:30 am. Mia was asleep well before quiet hours, Zoe just after. I took advantage of the free earplugs offered, and we all got a decent sleep.

Monday, July 11, 2016

Our original plan had been to climb Mt. Monroe on Sunday afternoon or evening, but the weather didn’t cooperate for us or anyone else. So, along with some others, we decided to do it before breakfast. It’s only 0.3 mile and 360 vertical feet from Lakes of the Clouds Hut up to the summit of Mt. Monroe.


Mia putting on gloves before climbing Monroe



Girls on the way up Monroe.


We made it up and down in about 45 minutes. Some kind folks took a couple sets of pictures of us. It was misty and wet on the climb. We saw a rainbow, and got some views. It was also very windy and quite cold. We all wore hats and gloves and rain pants and jackets.



View of Washington from Monroe



Mia on way down from Monroe

Breakfast was served family style: oatmeal, eggs, bacon, pancakes, tea, coffee, hot chocolate, juice.

The croo put on a Cinderella skit as they taught us how to fold up the wool blankets on our bunks. My girls and I had brought sleeping bag liners which worked well on the bunks with the provided pillows and blankets.

We loaded up our backpacks, and headed outside to start our hike at about 8:30 am. Some others took a picture of us in front of the hut.


It’s about 1.5 miles from the hut to the summit of Mt. Washington, and 1270 vertical feet. It was clear and sunny, though windy still. The girls started out slowly and we had to adjust clothing, take several breaks, and sort out whether Mia or Zoe was going to lead. Most of the other guests who had stayed at the hut passed us on their way up Mt. Washington, and that was definitely discouraging to the girls. Around this time, Mia also realized that she had been the youngest person in the hut that night. There were some other nine and ten year olds close in age to Zoe, but nobody Mia’s age. Zoe told me that she’d like to have a Feelings Class that took field trips then spent time thinking about and writing about the feelings of other classmates. I was in awe as she invented this concept in her mind, clearly recognizing her own spread of feelings and those of Mia and me as we confronted the elements and our own limitations.


As we were approaching the summit, a student intern with the U.S. Forest Service approached us to do a survey about use of the Crawford Path. The survey was asking about our experience in terms of our sense of whether it was too crowded on that day and what might make it too crowded. We had to estimate number of hikers per hour, and look at some pictures to see if that seemed too crowded. It was supposed to take us five minutes, but took more like fifteen.


We finally made it to the summit, about 3 hours after we had left the hut. We asked some folks to take a summit picture of us. There were a lot of people up there, most of them had come up by Cog Rail or in cars. There’s a full visitor center where we were happy to rest and eat hot food. The girls enjoyed pizza. I had chili. We saw our friends, the family of ten. We charged my cell phone which had run out of power on Sunday.

And, we conferred. I wasn’t at all sure we all had the energy for the descent we had planned. Mia seemed really tired and said she just wanted to take a nap. I asked her at one point what she wanted to do and she said she was okay to take a shuttle down. My right knee hurt. Zoe kept going back and forth. She asked what would happen if we got halfway down and one of us just couldn’t go anymore. I explained that we had enough food and warm clothes and gear to wait it out until we could go again. So, I posed it to Zoe that I thought we might need to take a shuttle down. She was very disappointed. Mia saw her upset and by then the hot food had reenergized her so she said she could walk it. I checked in again with each of them. Yes, they wanted to hike down, the Gulfside and Jewell Trails as planned, another 4.4 miles.

We all changed out of our long underwear and rain pants and put on hiking pants as it was dry and getting warmer, and would be getting even warmer as we descended. We filled our water bottles and Camelbaks, and set out just after 1 pm.

Zoe led most of the descent. We first had to get off the summit of Mt. Washington and down to the Gulfside Trail. Then, we headed along the Gulfside Trail, crossing the railroad tracks of the Cog Railway, and seeing some trains puttering up and down the mountain. The wind was bothering Zoe, and she decided she really wanted to be below treeline. I was especially enjoying the views and took a number of pictures. We all thought it was super cool when we spotted the Mount Washington Hotel and the Cog Railway Base Station, though the station looked really far away which was a bit discouraging.








White patch is Mount Washington Hotel



We continued on slowly and took a lot of breaks. There were definitely a lot more hikers out on Monday than Sunday. We passed a couple of the croo from the prior night. They had walked over to Madison Spring Hut and were on their way back to greet that night’s guests. They were practically running.

It was interesting to see how when the trail required us to climb before joining up with the Jewell Trail, the girls thought that we were going the wrong way. We weren’t, it’s just not all down, even as we were on the way down overall. Zoe was trying to see the way that the trail went as there were two sets of cairns and so I studied the map and showed her where I thought we needed to go. It was confusing to her as it didn’t seem like a direct way to the Cog Railway Base Station which we could see.

We all used our hiking poles on the descent and it definitely was helpful to maintain balance and to help me cushion some of the pounding for my knees. Zoe started an estimation problem. “If a quarter is about an inch in diameter and there are twelve inches in a foot,… How many feet in a mile? How many miles are we walking? How much money would that be if we lined up quarters all along the path?” I loved her questions but I had to tell her that her questions were beyond my mental math capacity in that moment. I was tired.

Mia started to talk to herself in the same sing-songy monologue she often uses in the bath or when she’s playing by herself. She was processing everything she’d seen, so there were stories in the snippets I heard about the hut stay, about the various phases of the hut. She was happy and just kept going.

We finally started to go down the Jewell Trail. A large group of fourteen and fifteen year old girls and their chaperones were also descending. We played leap frog with them for a while. Each time they took a break, we passed them, then we’d take a break, and they’d pass us.

The girls explained to me that it wasn’t like you immediately went from being above treeline to below treeline. It happened gradually. And so it did. The scrubby pine started to emerge after we’d been careful for hours of stepping on the fragile alpine flowers. Eventually, the trees were as tall as Mia, and then much taller than all of us. One of the chaperones of the group of girls took this picture of us, happy to be back in the trees!


Mia got really tired and started to whine. Zoe didn’t want to listen so she went a bit too far ahead. I had to corral everyone together, especially after Mia and I each slipped and I cautioned Zoe that we needed to stay together. I checked in with Mia who wanted to keep going despite some tears. We got low enough that we each had to take off our rain jacket. I stuffed each of our rain jackets into our respective backpacks. We descended further and the bugs came out. They were super annoying. Nobody wanted to stop to put on bug repellant. I eventually did because I couldn’t stand it, and I swabbed some on Mia’s neck and forehead too. We were all yelling at the bugs and at the missing trail branch that was supposed to be on the left any time now. Actually, the girls were confused as to how the trail could branch to the left as to the left was the slope of a hill going up. they didn’t want to go up.

We crossed a stream. I thought we were getting close. I went to look for my map which had been in the pocket of my red rain jacket. Uh oh. My red rain jacket was missing from the outer pouch of my pack where I had stuffed it. The kids were in good spirits at that point. I asked them to rest and eat another snack. I thought I might have snagged the jacket on a tree branch that I had to crawl under. I left them and my pack, took note of the time, determined to only go 10-15 minutes up trail to see if I could find my jacket. Not seven minutes later, I was beyond thrilled to see a family carrying my jacket. They were Austrian, had a couple of older kids, and had traveled in one day the same route that we’d done in two days. They said they’d found my jacket quite a way up the mountain. We walked out the final half mile with them. They even helped us with the last stream crossing which was a bit tricky. And, I shared some tips as they were headed to the Boston area for a few days after their White Mountain adventures.

We arrived at our car at 7 pm, took off our boots, stopped to get gas for the car and salt and vinegar potato chips for the girls, and drove the nearly three hours home without further stops. The girls were amped up and super goofy the first hour of the drive, but then slept the duration. Zoe claims she only slept twenty minutes. I know better. I tried to turn on my music. She awoke and asked me to turn it off. I kept it off as I wanted her to sleep.

Total distance hiked on Monday: ~6.5 miles