Author Archives: mara

Yard Work is Great Therapy

Both of my girls have long loved digging in the dirt each spring. Here they are at 4 and nearly 2 years old.

And, in the next picture, you can see how Mia is bearing weight on her right hand while digging with lefty in our backyard sandbox.

We also would play “wheelbarrow” where I’d hold her feet and she’d walk on her hands (not many pictures of that as I was usually the one holding her feet). This was great for weightbearing on both hands and for balance. Mia had a stroke at birth which largely affected her right hand and arm.

This afternoon, we set out to solve a puppy predicament. This morning, too early, our doorbell rang. I was asleep as the fifteen month old dog still wakes me up too early most days so I had fallen back asleep. The girls were up though and had let him out in the fenced back yard. Well, those holes he’s been digging finally panned out for him. He escaped into the neighbors fenced-in back yard, and was brought back to our front door by our lovely neighbor.

After researching a bit, and filling in the holes along the fence as best we could with bricks, dirt, and rocks, we decided to create a digging pit for Toby in a place where he already likes to dig. So, we dug a hole, and then used the wheelbarrow to transfer some sand from the sandbox that my kids have outgrown to the pit, layering sand and dirt, to make it a digging spot. Now, Mia can fill and push a wheelbarrow on her own, and it’s great for helping her use her whole self to coordinate balancing the wheelbarrow. She holds the metal rake the same way she holds a hockey stick when she’s skating out, and opposite from how she holds a lacrosse stick (for that she has her right hand near the end and her left hand near the head of the stick).

Zoe joined in the action for the training part. The girls buried Toby’s toys in the new pit and encouraged him to “find it.” Time will tell how effective this solution is for Toby. Meanwhile, he’s only allowed in the back yard with supervision. I’m pretty sure he’ll try to escape again.

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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