Mia had a stroke at birth. Bearing weight on righty has long been a goal to develop strength and dexterity. Mia is pretty brave, and she had to use both hands to climb safely. In this photo, Mia was five years old and we were visiting family in Boulder, Colorado.
Mia had a stroke around the time she was born. Here, she is using her left thumb to take a picture with the camera upside down. She was seven years old at the time of this picture in Zion National Park. We learned this technique from other families with a kid who has right hemiplegia, like Mia.
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.
Related Posts:
Changita means “little monkey” in Spanish. We are lucky to have Latina au pairs caring for my girls so here is “Mia Changita” doing her monkey thing!
Mia continues to amaze me, now at age six. This video is from a few weeks ago. Her inventiveness, strength, experimentation, and courage are all palpable. And, it’s really hard to tell that she had a stroke as she does most everything with both arms and hands and both legs and feet.
If you want to have some appreciation for this beyond imagining the abdominal strength needed to do this, check out my earlier post about Monkey Mia from when Mia first mastered the monkey bars at age four, or this one on neuroplasticity, or Mia learning to do skin the cat, and why Mia is an outlier as explained by Karen Pape, MD.
Tonight, Mia found the splint we used for constraint therapy when she was a toddler and until she was nearly 3 years old. She put it on even though it’s too small, and said she was going to give herself a “challenge” and give “righty” practice doing everything and that’s how she got ready for bed, using only her hand that doesn’t work quite as well as the other one for fine motor tasks. I asked her if she wants us to get a new splint that fits her better so she can do this “challenge” more often. She said yes. She asked me the name of the orthotist that we need to go see. I told her he’s Dr. Wall and he’s very funny. His name cracked her up.
Today was our fifth visit to the Pediatric Stroke Clinic at MGH. The first was when Mia was 2 months old, then 14 months, 26 months, 4 years and 2 months, and today at 6 years and 2 months. Every one of these appointments has been in mid August. The stroke clinic happens once a month, and we’re on an August schedule, at first once a year until Mia turned two, now once every two years. It’s a form of time travel for me, revisiting this place, with an older and more capable child each time, answering the same questions and some new ones, sharing information, seeing if I’ll learn anything useful.
The heat, the drive, the traffic, parking garage, finding the bathroom, remembering doing it all with a stroller, getting a snack at the cafeteria, finding the right elevator to the eighth floor, waiting, the really friendly staff in the waiting area as the stroke clinic shares space with the pediatric oncology team. They seem friendlier and more gentle with families than the other floor with pediatric neurology and gastroenterology. The toys in the waiting area are nicer. There are many books and a beautiful huge fish tank.
Today, there was a new neurologist on the team and she was great! She is an M.D./Ph.D. from Buenos Aires, spoke Spanish with Mia, and is eager to learn from me as they work to set up resources for families. Mia’s main pediatrician is a woman, and most of her therapists have been women, but this is only the second specialist we have seen who is a woman. She took time to get to know us, was patient when Mia wouldn’t answer her questions, gave her time to warm up, and asked really good questions. She asked me what kind of support system I have. She asked me to share resources with her as they are setting up a website to support families. She offered to write letters to support me in advocating for Mia to continue to receive occupational therapy through the school district and to get speech therapy too.
I found a sweet video of Mia at that first appointment six years ago. She was swatting at the toy horse hanging from her carseat, snapped into her stroller frame. Then and now, I watch this video clip and see that she is hitting the horse a bit more purposefully with her left hand than her right. It’s subtle but noticeable. And yet, her right hand is active too. I used to wonder what it meant, what would she be able to do with her hands.
Today, Mia read aloud for the new neurologist on the team. She ran down the hall, with no apparent gait issues. She hopped as easily on her right leg as her left. She turned pages in a book, took off her sandals, all using two hands in a very functional way. She can tie her shoes, paddle a kayak, climb trees and rock walls, swing across monkey bars, ride a bike, swim, waterski, play soccer, ice hockey, lacrosse, and piano. She is amazing and our journey has been rich with rewards and challenges.
I know a family new to this world of pediatric stroke. I know several such families in the online community of CHASA (Children’s Hemiplegia and Stroke Association). It’s a scary, bewildering journey. Love your child as if they are fine. Educate yourselves to advocate for the best care possible.
I have felt sick this week. It started as a bit of congestion Monday evening and then turned into intense fatigue Tuesday afternoon, worsened overnight as Mia needed some nighttime parenting. I did get good sleep Wednesday, night but still felt tired in my bones this morning. I felt sick again this afternoon from the heat and sun during the drive as I didn’t take the time to put on my sunglasses. I have been doing some amazing healing work with Irene Lyon to support my nervous system in healing from stress and traumas small and large, recent and distant. I sensed that my fatigue this week is a release of long held stress. And, then today, as I was trolling through my memories brought on by the heat and places on our route into Boston and through the MGH campus, I was moved to write here to process all of this, and it made sense all of a sudden. I am releasing some of that stored tension, the wonder and worry that started when I learned my two day old baby had suffered a stroke.
I felt it all today, the fear and uncertainty that made me anxious through the early days, weeks, months, and years, intense pride and connection with Mia as she showed off her many skills, compassion for my imperfect parenting of both of my children through a tough several years, and joy to have them both on this journey with me.
Since I had to take the afternoon off from work for the trip into Boston, after we finished with the appointment, Mia asked me to take her to get new sneakers before school starts next week. We found shoes she loves, blue boys’ ones, no laces please. And, I agreed because last year in Kindergarten, she learned to tie her shoes in September and had to practice all year with her lace sneakers that are now two sizes too small.
We met Zoe at home after her afternoon playdate and took her to soccer practice. Mostly now, life goes on like this with our full schedules of work and camp, soon shifting to work and school. We get help from our au pair to fit in all the activities, transportation, meal prep, and care needed to support the development of both of my girls. And, occasionally, I make time to pause, write, and share how much I appreciate the wonder of it all.
Mia and I like to joke that Zoe is becoming a Penderwick. You’d agree with us if you heard her exclaim things like, “Mama, Jane just said she’s lost count of how many times she has read ‘A Little Princess’!” We are into year three of our Reading Streak, that is reading aloud every day and logging our books.
To get to 800 days, we’ve had to invent some new rules. Guest readers are allowed and make it possible for me, Mara, to take a break from reading and parenting every once in a while. Zoe was recently sick and spent an entire day on the couch listening to “The Penderwicks on Gardam Street.” She fell asleep in the evening before Mara had a chance to read to her. We counted that as part of our streak anyway.
Coming out of her illness, Zoe decided to write to Jeanne Birdsall because she really can’t wait until the fourth Penderwick book is published in 2015. She tells me that we’ll keep on reading the three existing Penderwick books over and over until the fourth book becomes available. I keep introducing other options, and we come back to the Penderwicks again and again. This reading streak has echoes of life and parenting, dramatic tension, resistance, repetition. Here are the letters and art. Jeanne Birdsall has seven pets which is totally fascinating to Zoe since we currently have zero pets, having lost two fish and one hermit crab to the negligence of young children and their busy mother.
We are definitively done with the Little House books after traversing five generations of Little House girls and women over many months of reading aloud together.
Mia has an entirely different relationship to the Penderwicks and to the reading streak in general. There was the phase in which we read “Charlotte’s Web” something like eight times in a row at Mia’s repeated request. But, then there was the series of weeks in which Mia simply asked me for addition problems in lieu of her reading time. Other nights, she’ll want to play Go Fish or Crazy Eights. In the car, on a recent drive to Ithaca, we alternated hours, one hour we’d listen to The Penderwicks at Zoe’s request, the next hour we’d have “quiet” at Mia’s request. We did recently read “Matilda” which Mia chose from a stack I brought home from the library. Much as she sometimes protests “so many words,” I do believe Mia is listening too. She and Zoe were making up sounds and rhymes today about Jeanne Birdsall and Jane Goodall.
Our recent trip to NYC was made more fun by a quest to visit the Met as we’d just read “From the Mixed Up Files of Mrs. Basil E. Frankweiler.” Zoe was thrilled to find the mummies and see the fountains and Etruscan sculptures. Mia was tired and most interested in the gift shop where we found some novel toys and crafts.
In the summer, Zoe asked me one evening, “Does Einstein really exist?” And later, “How did they take his brain without killing him?” The questions continued so I said I have a book about him, “Einstein, His Life and Universe” by Walter Isaacson. It was my mother’s. I haven’t found time to read it. So, I pull it down off of the dusty shelf, and Zoe starts paging through the 675 page volume, asking if I’ll read it to her after we finish all our “Rose” books, and lands on the epilogue. “This is the chapter that mosts interests me, ‘Einstein’s Brain and Einstein’s Mind’.” She made a plea for me to read it, “Right now!” And, of course, I did. She listened to the whole epilogue, asking more questions. As I read one passage that quotes Einstein’s fundamental creed, “The development of science and of the creative activities of the spirit requires a freedom that consists in the independence of thought from the restrictions of authoritarian and social prejudice.” Zoe remarked, “He’s really smart. I don’t know most of those words.” She lugged it upstairs and continued to study the contents, reporting that there’s a chapter on “Divorce” and “a girl named Elsa” (think Frozen as do many 7 year olds), and asking, “What’s a Red Scare?” So, then I was trying to explain Communism and Democracy. But, later when I brought a close to the usual upstairs bedtime reading before she was ready, because we’d taken time out for Einstein, she lost it and we had a bedtime tantrum. Did I mention that while I was reading the epilogue to Zoe, Mia was blowing a high-pitched whistle loudly in protest?
Our reading streak continues, and while we started with a modest goal of making it to 100 consecutive days of reading aloud, 1000 now seems startlingly within reach. As always, we welcome suggestions on titles, authors, series, and all genres that might interest two girls, ages 5 and 7.
My last daycare check is in the mail. I reach this milestone with a mix of emotions.
In the first picture above, Zoe was visiting Mia and me in the hospital. Mia was just thirty-six hours old. It was a dozen hours before she had her first seizures which meant she had to be sent alone with medical staff by ambulance from the hospital where she was born to a bigger one across the river, with a full NICU, and the ability to diagnose her stroke.
In the second picture above, taken last week, Mia and Zoe are goofing around, far too big to be in the bike trailer, but asking me to take them for a ride for fun. Zoe is seven. Mia is nearly five.
In both pictures, their sisterhood is so present. It’s ironic to me now to see Mia sucking her left thumb and Zoe studying her right thumb. This was before, before we knew that Mia would become a lefty for sure.
It’s a leap of faith to have a child, perhaps a blind leap of faith to have a second as a single mom. I leapt twice and somehow we have all made it, not just surviving nearly five years as a family of three, but really thriving even in the face of some daunting challenges.
Last year, I actively participated in Pediatric Stroke Awareness Month, blogging daily through the month of May. That effort has had many benefits, new contacts with families and professionals interested in pediatric stroke, sharing information broadly that seems to benefit others, and most personally, helping me affirm how far Mia has come with my support. It was cathartic and healing to be able to share more details of our journey. And, we raised significant funds for Children’s Hemiplegia and Stroke Association.
This year, I considered repeating my blogging streak. I could easily have written updates on all the topics of a year ago, showing Mia as an even more competent kid, now almost five. But, I made an active choice not to blog. I am investing more this year in my own self-care. Blogging that intensively last year meant lost sleep. And, this spring, we are in a big transition. I wanted some space to feel my way through the changes.
To work full-time outside the home as a single parent requires tremendous logistical support. Zoe was in a family daycare in our neighborhood her first two-and-a-half years, but even before I was pregnant with my second child, I had visited the daycare/preschool where I would later send both girls. I loved it then and still do now. Some of the teachers have been there more than twenty years. They care for infants all the way through pre-K. Both girls started there when my maternity leave ended. Zoe was in the youngest preschool class and Mia was in the infant room. For three years, both girls went there full time. For the past two years, Mia has been in preschool there and on Monday she goes for kindergarten orientation at the bilingual school where she’ll join Zoe in the fall.
Mia has just three weeks left at this beloved school. Today, she hosted me as her special guest in her class brunch. I’ve been feeling nostalgic as the end of this era approaches. I’m putting some of that energy into making a special gift for the school and cards for the teachers.
Of course, my budget will be easier without having the expense of daycare. I look forward to seeing my bank balance when my mortgage payment exceeds my childcare expenses again. That has not been true since before I had my second child. I feel grateful to have been able to afford such excellent care, to have had the amazing continuity so that both children have had many of the same beloved teachers, and that we’ve been there long enough to feel like they are part of our family, certainly part of the village supporting me in raising these beautiful girls.
When I signed us up for two spots in this daycare, even before Mia had been born, I had no idea that she would have any special needs. And then she did, and I took a lot of time in the beginning to orient the caregivers to exactly how to handle Mia when picking her up, not to prop her in sitting but to let her lie down and find her own way there. As a toddler, she went to school wearing a splint on her unaffected left hand to give her time every day to practice with righty, modified constraint therapy. The teachers followed my suggestions for sensory play with my promise that whatever was good for Mia would be great for other children too. Mia played with shaving cream, sand, water, rice. And then, after eating snack with righty, the teachers could help her take off her splint so she could go outside to play and she could use both hands and arms to master the playground by climbing, swinging, traversing the monkey bars, and sliding.
Each year that Mia has transitioned, I have met with the new teachers to orient them to her needs. I have written up a one or two-page set of suggestions for how to best support Mia’s development. Remarkably, this year, both of Mia’s teachers have marveled at her curiosity, eagerness to participate, persistence and independence, and self-care skills that are on par or ahead of some of her peers. It’s through their eyes that I have come to see Mia as so ready to take the next step, to leap from the early childhood years into elementary school with her big sister leading the way.
And, it is nearly time for me to make that transition too, to escort Mia to kindergarten orientation, to believe that we made it, not just through the financial hurdle of getting care for two kids from birth to five while working full time, but through the developmental hurdles put in our path by Mia’s stroke.
Here are my girls in action recently, Mia on her 16″ bike, confidently making a turn, Zoe joyously swinging on the trapeze swing.
I will close with gratitude for making it to this transition with the love and support of many. Here’s one of Mia’s recent pieces of art, where she so clearly affirms her left-handedness.
I was just interviewed by Suzanne Kronisch for her “What’s YOUR Feldenkrais Story?” series.
One of the things that came up in our discussion was this essay I wrote in 2005 to my classmates when I was in a four-year Feldenkrais training program. I’m sharing it here so Suzanne can link to it and to give more context for some of my Feldenkrais musings on this blog.
Date: Tue, 25 Jan 2005
To: <My NY Feldenkrais Professional Training classmates>
Subject: shifting acture, shifting emotions
Hi,
Sunday morning of our last segment, David began by saying that he was going to teach a rarely taught lesson. It began something like this. Sit on the floor. Bring your left foot to standing, extend your right leg in front of you. Lean on your right arm behind you. Place your left hand on your left knee. Exhale and slowly push out your lower abdomen. Inhale and slowly pull in your lower abdomen….
I don’t want to repeat the lesson here as you were all there doing it with me. I do want to share my experience of doing the lesson, and the experiences I had immediately afterwards and continue to have now, more than a week after this lesson.
Sometimes I am fully present for an ATM, and this was one of those times. As I heard David say “rarely taught lesson” and then go into a story about where he remembered it being taught, I said to myself, I’m gong to do this lesson really carefully, really attentively. Of course, I’d love to do every lesson with these qualities but I’m not there, sometimes I am, sometimes I am not. This one particular lesson, I was there.
During the lesson I stayed in a tiny range. The position is not the most comfortable for me, but it is a whole lot more comfortable than it used to be. Even at the beginning of the lesson I could feel how my hip flexors were engaged. My lower leg was not quite standing vertically, but more at a 45 degree angle with the floor. Other people had their lower leg planted almost at 90 degrees to the floor which seemed closer to the instructions. I closed my eyes and told myself again to find my own ease, my own starting place. I kept coming back to this.
Part way through the lesson I began to feel the tonus in the leg that was long change for me. I could let it rest more fully on the floor. That was one of the first shifts that I noticed. I also noticed that for me to stay in the tiny range that was fruitful for me required just allowing a tiny movement in my hips and pelvis, really tiny, maybe not even visible, but I could feel it.
The lesson continued and I continued with the same quality of attention to myself. When I stood up, I was rewarded tremendously. My feet were making an entirely new pressure pattern on the floor, balanced more along the line between the heel and the ball of my foot towards the inner border of my feet. My legs felt as if they were completely underneath me. My knees felt free. And my low back and hips and pelvis felt remarkably free.
I happily wore this new pattern all day Sunday. I didn’t pay as close attention to any lesson after that, I had gotten my weekend’s fill. That evening, I got curious, I posed a problem to myself to try to find my way from my brand new pattern back to my old familiar pattern. I was afraid to do this, afraid I might lose this newfound freedom, but I was also curious to see just how much I could sense in the difference between what I was doing. And, I wanted to have a choice. I know from past experience that if I can find the way there and the way back, I can choose, just as Moshe taught, just as we’re taught, to stop any place along the way.
My sensations were there to guide me. Because standing was where I noticed the difference most clearly, I did my experiments in standing. At first, I used the new sensations as they were prominent – the pressure pattern of my feet on the floor, my sense that my legs had turned slightly inward and were somehow more aligned to support me, my sense that my low back was long. Then, I started to make small adjustments, thinking of changing the pressure pattern of my feet, thinking of rotating my legs outward a tiny bit as the outer borders of my feet accommodated more pressure, realizing this made my lower back arch more. I found my old pattern eventually. It’s a pretty strong magnet.
It was harder for me to find my way back to the new pattern from the old. The thing that was most dramatic was how far I had to shift my pelvis backwards to get there. That became the key, the place from where I could initiate the entire shift in pattern. It’s not a small change in terms of physical distance. My pelvis actually shifts several inches backwards to get to the new pattern and that’s accompanied by my low back lengthening, actually my entire spine lengthening and my neck becomes free. My legs rotate inward and under me, and my feet are there to help me easily balance.
I showed a few of you the old and new pattern on Monday. You told me that I grew in the new pattern. I do, at least an inch I’d guess. The shift is so amazing to me that now that I’m home, I’ve been playing a game in the mirror where I stand and look at myself in the mirror with something behind me that I can see to monitor my height. I shift from the old to the new pattern again and again almost to convince myself that I can, and I see with my own eyes that I grow in the new pattern. I feel all the openness that comes with this new pattern. Then I allow myself to shrink again and my chest collapses as my low back takes on too much work and my knees nearly lock and my ankles become stiff and my neck feels strained.
Monday, the last day of our segment, began with Marie-Lauren teaching a fun lesson that I approached with too much exuberance with my newfound freedom. The position of kneeling with one foot standing, and then doing all kinds of side bending, led me to do too much. I didn’t feel it at the time, just on the bus that evening, I felt my outside of my left leg as if I had strained a muscle. My low back and hips still felt free, but I knew I had overdone it. Tuesday, in my yoga class, I was careful to just work on allowing that muscle to let go again, and it did.
Thursday, I went again to yoga, and my teacher who is very tuned in to energy took one look at me and told me that my energy had shifted. She knows about my Feldenkrais training, so I told her about my breakthrough. I showed her the old and the new pattern. Again, she exclaimed how much my energy hadshifted.
I can’t see or sense energy in the same way that she can, at least not yet. But, I have noticed that my mood has been better than usual, my energy level has verged on manic over the past week, and my overall emotional tone has felt less anxious, more calm.
I’ll attempt to describe a little how I understand this. In my old pattern, it’s almost as if my neutral is very far forward of what’s possible for our human structure. For me this seems to fit with my alpha tendencies to often be first, to act quickly, to plow ahead, not always aware of all that’s around me. It’s almost a starting place that doesn’t allow so much reversibility because I’m already committed to going forward.
In my new pattern, I can sit back with comfort and ease, I can shift easily forward or backward or left or right. I can take in my whole environment and choose when and how to respond. I feel as if I have more time. I feel less tightly wound. I feel as if I need to get to know myself all over again, which is exciting and fun, and a little odd. Every little thing I do, from walking, yoga class, shoveling snow, even doing dishes and brushing my teeth, each is an opportunity to attend to my pattern, to catch myself if I fall back into the old pattern, to delight in new sensations and new options afforded by my new pattern.
Best,
Mara
Play detective with me as you follow along in this post and the videos.
Here’s Mia skating forward this past Monday, eight weeks into the hockey season, skating twice each week.
Note that when she skates forward, she can rotate her left leg (unaffected side) outward and push off on the inner edge of the skate blade. But, she is doing something else with her right leg and foot (affected side). She has the foot oriented such that she’s leaning on the outer edge of the blade and the foot is pointing straight ahead. When Mia skates fast at hockey practice across the ice, she literally starts at the goal line and ends up at the blue line and turns around and does the same thing again, progressing at roughly a forty-five degree angle across the ice from where she starts. At first, I thought she was trying to get to where Zoe was along the boards. But, now it makes sense. Her left leg is doing most of the work to propel her forward so she’s not skating in a straight line.
Here’s Mia skating backward from the same session.
Note that she has a hard time spending much time bearing weight on her right leg and doesn’t seem to know how to orient it. Unlike many beginning skaters, her ankle is bent outward.
Each practice, the kids do some routine skating drills including “making snow” where they brace one foot against the boards and use the other foot to repeatedly push outward to make a little pile of snow. They do this first with one foot and then with the other. After that, they do “C cuts” which helps them learn to skate backwards. Mia has complained that it’s hard for her to do these skills with righty. This might be her first direct experience of finding something difficult with her right leg and foot. She has expressed similar frustrations with her right hand when trying to do certain tasks.
Other coaches sometimes help orient Mia’s stick so it won’t trip the other kids, packed tightly, nearly forty of them lined up along the boards between the goal line and the blue line.
In my previous post about Preparing for First Hockey Season, Mia was not so advanced in her skating so she was essentially walking on ice, falling and getting up. There was no obvious difference in how she was using her legs in that video clip from two months ago, repeated here for reference.
When walking and running, Mia has no obvious issue with her gait, despite her early stroke. I’ve been wondering about her footedness. In soccer, she chooses to kick the ball with her left foot, and briefly balances on her right foot. She has grown skillful on a scooter, balancing on her left foot and pushing off with her right foot, even using her right foot to depress the rear brake on the scooter which is an advanced maneuver. Here she is on the scooter in early November.
In recent discussions on a forum for families with children who have hemiplegia or had a stroke, there’s been a discussion about how to support the development of these children’s affected foot or leg. I chimed in mentioning my observations about her scooter usage and her soccer preferences, and suggested that skating would be an excellent activity and indicated that Mia is learning now. Part of my goal in documenting Mia’s learning process in detail here is to share the nonlinearity of learning, even for Mia who by all accounts has so far had the best possible recovery from her early stroke.
Mia’s attitude continues to be incredibly determined. She was moved up from the “chair pushers” after just a few weeks to the Red group. Then, when she outgrew her skates and had a few rough practices as she adjusted to her new skates, I offered that she could go back to chair pushers. She declined. Then, in a moment of frustration, she asked to switch groups. She only stayed with the chair pushers a few minutes before returning to the Red group. She is starting to skate faster and wants to keep up and learn. She seems to not mind being among the slowest in the group, and may not notice as she’s so focused and determined.
As I observe and document Mia’s progress, I wonder what to do to help her. My goals are to support her in having fun and learning new skills that are good for her overall development, regardless of whether she wants to continue with hockey.
I could pursue a direct route and send her for private skating lessons or talk with Mia about what she’s doing and how it affects her skating. For now, at this age, I prefer a playful approach combined with giving her neuromuscular system time to mature and figure out how to skate.
I’ve been consulting with others and thinking myself of off-ice activities, inspired by Feldenkrais to introduce variablity in a playful way that will both wake up and strengthen Mia’s ability to stand upright on her skates, and freely shift her weight and use her legs and feet in a variety of ways that she will hopefully be able to transfer at some point into an improved skating stride. I will attempt to experiment with some new warm-up activities for all three of us, so it’s just something we do as a family to get ready for skating, and see what emerges.
The girls had a makeup class for gymnastics today as they missed their usual Wednesday class last week when we were traveling. I was able to go watch today for the first time, and was very happy to see them both enthusiastically practicing their skills.
As a young child, I was kicked out of gymnastics because I was not able to do handstands and cartwheels to someone’s satisfaction. And, then that story got told and retold by my mother in a way that was shaming. So, it’s with some relief and joy that I can see my kids in this environment that is clearly very fun and supportive.
Here’s Mia (purple leotard) in action, though somewhat distracted:
And, Zoe (black leotard) too, hamming it up for the camera:
Today, I chatted briefly with Mia’s teacher, who is not her usual teacher, and he hadn’t noticed her right side being weaker. He said she did great! It was hard to get good still pictures with the camera I had on hand so I’d like to go again with a longer lens to get some shots of Mia doing the crab walk and other weight bearing activities that are awesome for her strength and balance.
I struggle with wondering if our lives are oversheduled. It’s a lot to keep up with, even with the help of an au pair. But, then I saw the quality of teaching and therapeutic value of this activity and we’ll keep it for now. The next session starts next Wednesday for both girls.
In beginner hockey, the girls are improving their skating through practice twice a week, but the ratios are not great so it’s mostly through practice and less through instruction that they’ll learn. When we go to open skating, I can give my girls more 1-on-1 tips.
In contrast the gymnastics classes are small, and the teachers are insisting on proper form, offering lots of encouragement, and keeping an eye on helping the kids develop their skills. Mia’s class has three or four kids. Zoe’s may have six or seven.