Tag Archives: Feldenkrais

Shifting Acture, Shifting Emotions

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

Mia’s Skating, Play Detective with Me

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.

Pediatric Stroke Clinic – 4 Years Old

Two Thursdays ago, I took the morning off from work to take Mia to the pediatric stroke clinic. It was our fourth visit to the stroke clinic. We went when she was two months old, fourteen months old, two years old, and here we were again at four years old.

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Two years ago, when she was two years old, I agreed that she could be part of the International Pediatric Stroke Study. That means visits every two years until she turns ten.

Mia dozed in the car on the drive into Boston. As we descended into the parking garage, going around and around and down, she awoke and told me, “Park over there, Mommy.” She pointed to the left and the signs were telling me to go right. When I parked, she got upset, not quite understanding my explanation about why I couldn’t park where she wanted me to park. She recovered after a few minutes and noticed the numbers on the wall in front of us. Pointing, she said, “That one has two ‘5’s. And, that one has one ‘5’ and that one over there has one ‘5’ too. That one has a ‘6’ like Zoe. And, that one has a ‘4’ like me!” The numbers were 504, 505, 506. Zoe is six years old. Mia is four. Just a few months ago, Mia’s preschool teacher told me that Mia was not yet recognizing numbers.

As we walked through the garage to the elevator, she told me, “When I was a baby and toddler and you took me to the doctor, you used a stroller.” I said, “That’s right.” She continued, “Now I’m big and don’t need a stroller.” We haven’t used a stroller for more than a year. I find it fascinating to see what she remembers. I find it interesting to see what I remember. Summer visits to the hospital complex where she was in the NICU are tinged with post traumatic stress for me. The heat and humidity take me back to my early days finding my way around.

The stroke clinic is in the outpatient building on the eighth floor. We were on the sixth floor for Mia’s appointment with her neurologist just a month ago.

We stopped in the café on the ground floor for some snacks and to use up some of the time we had to wait. On the elevator, Mia asked me to show her the ‘8’ so she could push the button to get us up to the eighth floor.

The stroke clinic is run out of an office shared by hematology and oncology doctors. The toys are nicer. The atmosphere is quieter than the sixth floor wing shared by neurology and gastroenterology doctors. There seem to be more signs warning to wear masks if you are coughing. I started thinking of cancer patients with compromised immune systems. We walked past the resource center for cancer. Prayer flags, decorated to honor patients are strung along the sunlit hallway.

As we checked in, the administrator took special care to make Mia a patient wristband with stickers on it. Mia chose rainbows, one for the wristband and one for the back of her hand.

A huge bin of giant coloring books was on the floor with an inviting sign urging kids to take one. Mia chose a Noah’s Ark coloring book. She got busy playing with the toys and then spent some time looking at the fish in the giant tank.

We went back to use the bathroom and Mia was a little confused because it wasn’t in the same location as the one from a month ago. I reminded her that we’re on the eighth floor now, not the sixth.

The nurse weighed Mia, measured her height, took her blood pressure.

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We returned to the waiting area and Mia asked to use the iPad. She continued to play on it after we were taken back to our exam room.

They all came in together, two neurologists, a hematologist and four young women observers, at least thirty minutes after our scheduled appointment. One of them commented about the iPad, “It’s kind of distracting.” I managed to persuade Mia to turn it off. She did so spontaneously with her right index finger. Mia became alternately goofy and shy, leaning onto me and burying her head in my chest. She wouldn’t talk much. She did eventually finish eating her yogurt and used her right hand to bring the spoon to her mouth when they asked her to do that. She was eager to show them videos on my phone of herself riding her bike, swinging from the monkey bars, doing skin-the-cat. I answered their questions and tried to direct their attention to things I notice. I told them about the conversations while parking, about 504, 505, 506. One of the neurologists said, “It must take a long time to get out of the car.” I asked if they are familiar with Dr. Karen Pape and her work. I told them about her recent recognition of Mia as an outlier. I found the video of Mia doing skin-the-cat. They seemed rushed. Mia was eager to get to the part where they ask her to run up and down the hallway. She also got to hop on one leg down the hallway. All eight adults watched as she dashed back and forth.

Back in the room, one of the neurologists said, “Even though she’s doing great, we think you should go back for a neuropsych exam next year when she’s five, before kindergarten.” I said, “We went when she was three and the neuropsychologist wants to see her when she is six, before first grade.” They conceded, “Oh, she’s the expert.” Meanwhile, Mia grabbed both of my hands, and climbed up my front to flip over. One of the doctors got a tear in his eye as he remembered his younger daughter doing the same.

They asked us to come back in two years after the neuropsych exam and they mentioned that the administrator could help coordinate the scheduling. That’s another difference from the regular neurology office. There, I have to remember when to schedule the appointments. Back in the lobby, the friendly administrator asked for the plan and wrote some notes to contact me in March of 2015 to schedule the neuropsych appointment that June so the stroke clinic appointment can be in August after the report is available from the neuropsychologist.

While it’s a huge relief to not have to go back for two years, I find myself frustrated with the kind of disconnect that we experienced. It’s so stark in contrast to the validation from Karen Pape. It’s stark in contrast to the Feldenkrais lesson Mia received this morning. I understand that the standard time slots allotted even for clinic appointments don’t allow time for real observation or connection. But, it saddens me that their questions didn’t go deeper, that they didn’t take more of an interest in a kid doing as well as Mia. I left them with the address of this blog, unsure if anyone will take the time to learn more about our struggles and triumphs.

This morning, we went to see Matty Wilkinson and Jennifer Lee for a Feldenkrais lesson. Jennifer was visiting from California and mentoring Matty. Their approach was so gentle, and even when Mia resisted Jennifer’s touch at times, we three adults danced together in a way that gave Mia support for a full forty-five minutes to sense and feel herself in movement.

Reflections on Outliers Post by Dr. Karen Pape

This bench is in the Ithaca Children’s Garden which we visited last weekend. The image seems fitting here. Just as my girls are attempting to match their hands to hands in the bench, parents of all sorts are doing their best by their kids.

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Karen Pape, a remarkable physician focused on helping children with early neurological injury reach their fullest potential, recently wrote a post about Mia as an outlier, an outlier in the best possible sense as she’s doing more than expected. I feel deeply honored to be recognized by Karen Pape in this way. How can we get more children on track to reach their full potential?

I want to share the link here so others who may learn something or draw inspiration can find it if they happen to find their way here first. And, I also have some thoughts to share as the mom of Mia and Zoe. Parenting young children is relentlessly hard work. Parenting a child with special needs, specifically Mia who had a perinatal stroke, is a series of decisions, a lot of worry, educated guesses, trial-and-error, and a whole lot of wondering if those choices are right or wrong, too much or too little. In the early days, weeks, and months, darker worries and fears were more prominent for me.

Each of Mia’s birthdays has been another opportunity to see how much she has accomplished with support from me, Zoe, and many others whose help we have enlisted. Mia’s own accomplishments and her pride in tackling and mastering new challenges continues to be the greatest affirmation that some of those choices have served her well. My experience in a four-year Feldenkrais Method professional training prior to having children was the best possible education I could have had to parent Mia in recovering from her stroke. It taught me how to observe, to sense and feel, to give Mia the space and time to discover for herself how to do things. And, from the beginning, when Mia was first diagnosed, I understood that Feldenkrais lessons could be a key component in her development.

In starting this blog in May to support Pediatric Stroke Awareness Month, I have discovered my voice as an advocate and educator. That was not my intention, another welcome surprise on this parenting journey. I’m hearing from parents around the world that Mia’s story has inspired them. Some are even asking for specific suggestions about their children’s developmental needs.

I’m certain that there will be many more parenting decisions that challenge me with both of my girls. And, I’m sure that I will make many more mistakes. But, I no longer wonder if my overall approach to meeting Mia’s early developmental needs is appropriate. Mia has confirmed that over and over. Zoe continues to lead the way in modeling things that Mia can do. And, this recent validation from Karen Pape has motivated me to continue to share more details about how I have supported Mia’s development in this critical period of early childhood when brains are most plastic. Specifically, I have two more case study posts in mind using words, video, and still images. One will show Mia’s early locomotion from rolling and reaching to commando crawling to crawling on hands and knees and walking. The other will show Mia’s process in learning to ride a bicycle, starting with a balance bike and progressing to a two-wheeler, skipping training wheels.

Case Study: Skin-the-Cat

Mia taught herself to do skin-the-cat the weekend of her birthday party, days before turning four. This is one of many seemingly amazing milestones she’s hit this spring and summer. I’ve been celebrating them along with her and Zoe. In fact, the first time she did it I was not watching and Zoe helped her. Mia came to tell me and repeatedly told me, “I’m so proud of myself!” And, she was, she owned her new accomplishment.

Here she is, the morning of her birthday party in full action.

I have a series of posts in mind that I’d like to write over time to show and tell how I think it’s been possible for Mia to master so much. I happen to have a lot of photos and videos of her development. This is the first such post. Mia is incredibly determined and courageous and always has been. I’m quite attuned to her needs and goals and have focused a lot of attention on providing an environment where she can continue to thrive and learn, sometimes in surprising ways. Mia has been pretty persistent at mastering her world since infancy and that continues. Her repeated practice in different settings allows her many “successive approximations” until she masters a new skill. This notion of “successive approximations” is one that Feldenkrais wrote and spoke of often.

At four years old, Mia definitely owns her “I can” attitude. She has many experiences of watching her older sister, Zoe, master one thing after another. And, Mia comes along finding her own way to do many of the same things in her own time. Just this week, she surprised me in the lake where we swim. She’s swimming farther each day than the last without assistance or floatation and now she’s asking to dive under my legs, just like Zoe. And, she surfaces with rocks in her clenched fists asking me to guess which one has the rock and which one has just sand.

This story goes way back to when Zoe was an infant and some friends lent us this baby hammock for her to sleep in. Zoe was so mobile that she only lasted a couple of months in this hammock because I was afraid she’d end up on her belly in the soft hammock and obstruct her breathing.

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Those friends needed it to lend to another family so we gave it back but I asked to borrow it again when I was expecting my second child. I had it set up days before Mia was born, and Zoe discovered that it worked pretty well as a place to swing like a monkey. Zoe was nearly 2.5 at the time.

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Mia did sleep in it too for a few months. By the time she was done with it as a sleeping hammock, Zoe’s habit of swinging from it was so established that I put the hammock away and left the frame in my bedroom for daily gymnastics practice.

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Mia started to swing from it a couple months after turning two.

Zoe taught herself to do skin-the-cat on the hammock frame when she was 4 years, 8 months.

When Mia was nearly 3, she could swing from rings like these. Soon after this picture, we got our own set for our outdoor playset.

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At Zoe’s, sixth birthday party, when Mia was 3.5, Mia was able to support herself well on the bar and pull her knees to her chest.

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So, Mia’s seemingly sudden mastery of skin-the-cat on the triple trapeze swing featured at the top of this post really can be traced all the way back to Zoe discovering what a wonderful piece of equipment that baby hammock could be, without the hammock of course.

The frame remains in my bedroom. I’ll close with a video clip of Mia working and working to get her feet on the frame of it. She had done it several times before I started trying to capture it on video so by this time she was tired. But, you can still see her determination, intense persistent efforts and  good attitude. Note how she experiments with placing her hands in many different spots to see how that feels and works. Allowing all of these attempts is what ultimately helps Mia build strength to master these skills and many others. And, she can transfer the same skills to doing the monkey bars.

Mia Learning to do a Headstand

Last weekend, Mia had another pair of Feldenkrais lessons with Matty Wilkinson. On Sunday, Matty was working with Mia on her back and Mia was hanging out playing the harmonica. Then, Mia started to get a bit restless with being on the table and so she was hanging her whole body off as in the third picture below. She did this a few times. Matty used some of his playful strategies to get her back on the table but she had decided that she wanted to practice doing headstands with Matty and she told him that.

Thankfully, Matty embraced Mia’s new direction for the lesson, and supported her in many different attempts at headstands, even a couple tries at a handstand, and he introduced Judo rolls to get her into and out of the headstand position.

We had to move the table out of the way, bring in a padded rug, and use the wall for support. Zoe was there too and enjoyed watching and even helped take some pictures.

Mia was focused, driven to learn, and joyful. I’ll let the pictures show some of that progression.

At the end of the lesson, Matty said that he now has a better sense of what Mia is like when she decides she wants to learn something. Her drive and persistence are contagious.

All week, Mia has continued to practice her headstands and tumbling with new skill in all aspects of the movements.

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Health Care, Logistics, and Finances

As I wind down my Streak for Mia in the month of May to raise awareness about pediatric stroke, I realize I haven’t yet written much about navigating the health care system, insurance, and out-of-pocket expenses.

We are lucky in many ways. Our health insurance is excellent. We live in the Greater Boston area with its phenomenal health care services. I have enough room in my family budget to pay for expenses as they arise, to see a toy as potentially therapeutic and make the investment, to travel to other states to seek out special Feldenkrais practitioners. I am lucky to have a job and employer that have given me enough flexibility to attend all of Mia’s medical appointments and most of her therapy appointments.

Many people who parent children with special needs, including stroke survivors, don’t have the same resources. I believe that for Mia, early diagnosis, treatment, and ongoing support have been critical to her recovery. One study estimates that in the year after a childhood stroke, medical expenses average $43,000.

I haven’t taken the time to add up all of Mia’s medical expenses. Fortunately, I haven’t had to do that. Insurance covers most of it. I have made spreadsheets to track her appointments, to plan upcoming ones at a pace that is sustainable for our lives. I figured out early on that it was helpful to schedule one per week for a  number of weeks in a row and then to have a break before the next round. In the early days, some of her doctors wanted to see her every 3 or 4 months. Having more than one appointment per week stressed our family schedule. Having weeks with no appointments was liberating and let us establish some normalcy. I also have spreadsheets that I have used to plan for and recover money from both health care and dependent care flexible spending accounts.

The hardest financial battle I had to fight was with the flexible spending account administrator over Mia’s “participation fee” for Early Intervention services. The fee is based on family income and size. When she entered the program it was $250 for six months of participation. When she had about a year left in the program, it tripled to $750 for six months. I knew about the increase far enough in advance to allocate pretax money for it in my flexible spending account. I debated about whether to continue with these services or to switch to outpatient services through Spaulding Rehabilitation Hospital. There was no way that I could have gotten Mia to a weekly session of occupational therapy at one of the rehab hospitals. Early Intervention came to us at home or daycare. Logistics won over pure finances.

A copay for one occupational therapy session is $20. So, even if we could go once a week, the copays for 26 outpatient therapy sessions would have been $520. I decided to stick with Early Intervention and pay the extra fees, counting on the flexible spending account to reduce the fee by using pretax dollars. I think it took three rounds of submitting the paperwork to finally get the reimbursement approved over a period of many months. They quibbled with it being called a “participation fee” even though they would have readily approved comparable outpatient expense of copays. I had to ask our Early Intervention liaison to make up different paperwork as justification. This was all very stressful. I can only imagine what others have to go through to justify insurance expenses routinely.

We have traveled to New York City and to New Jersey for Mia to have intensive series of Feldenkrais lessons over a period of days from two different practitioners who are particularly gifted in working with children. These trips have been paid for entirely by me, thousands of dollars and worth every penny for the gains Mia made in those trips.

My childcare expenses have also been impacted. Before this year, Zoe and Mia were both at the same daycare/preschool for the prior three years. When Mia was a little over a year old and Zoe was approaching four, a friend helped me realize that I needed more help as a full-time working single mom to two kids, one with special needs and extra appointments. So, in addition to two full-time daycare spots, I added a sitter three afternoons a week. Having another adult available to pick up my girls three days a week and to help with the crazy afternoon and evening routine helped tremendously. On the weeks when I had to take Mia to a late afternoon appointment, the sitter could pick up Zoe and play with her until we got home. A second sitter also came regularly on weekends for a four or five hour stretch to play with the girls so I could run errands or go exercise by myself or even just sit still and read a book. I gave myself a gift of four Thursday evenings out in the month of December 2011 with a sitter referred to me by a friend. After that, I kept her coming every other week for close to a year. While I really benefitted from having so much help, it was expensive to pay three different sitters hourly and a lot to manage logistically.

This year, with Zoe and Mia in different schools for the first time, I switched from daycare plus multiple sitters to having an au pair. Mia still goes to the same preschool. Zoe is in public school for Kindergarten and the au pair is available to work up to 45 hours each week so I am not attempting to handle getting two kids to and from two different schools. I consistently take one evening off each week from kid-duty. This has made a huge difference in my life and sanity this year! It’s definitely the right childcare solution for our family for the next few years and gives me a lot more flexibility, some built in times for respite, and continuity of care for my girls.

I’ll close this second-to-last post of the streak with a picture of just how crazy things can get around here. One night last fall, I was reading to Zoe in my room while Mia was playing in their room (too quietly). When Zoe and I went to investigate, we discovered that Mia had emptied every single item of clothing from her dresser. At moments like this, you can sit down and cry or laugh and go grab a camera. I chose the latter.

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Parenting Reflections at 3 years 11 months

As part of my Streak for Mia, I am writing daily in the month of May to raise awareness and funds for pediatric stroke survivors.

In a month, Mia will turn 4. Most people who look at her wouldn’t know that she had a stroke at birth. I know this because I’ve had this conversation many times. Another parent will marvel at how fearless she is, how skillful on the playground. I will appreciate the comment and sometimes add that it’s even more remarkable given her early beginnings. Then I share that she had a stroke and most people are completely caught off guard. Really, babies can have strokes too. Mine did.

Here she is at 4 days old, having an EEG to characterize her early seizure activity. She also has a feeding tube in this picture which she needed briefly as I was working hard to reestablish breastfeeding when she was extra sleepy because of the antiseizure medications.

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I see her stroke in everything she does. I see some of her quirky patterns of movement. I see all that she can do, all these newly emerging skills like her bicycling and monkey bar feats, and it all seems that much more significant because there was a time when I really didn’t know how her stroke would affect her.

I have looked with these eyes, seeing everything and doing everything to ensure the best possible learning environment for Mia. I’ve worked hard to find the right balance of approaches, some combination of Feldenkrais, occupational therapy, constraint induced movement therapy, and fun everyday life with me and Zoe at home and with friends and teachers at preschool. I’ve managed countless doctor’s appointments, navigated the IEP process, advocated for Mia with each new set of therapists and caregivers. All the while I have had an ongoing sense of not know if I am doing enough or maybe I am doing too much. Self doubt like this is hard to grapple with when life feels a lot like treading water. Being a single mom to two young girls while working full time is already more than enough to fill my days. Adding in the extra work of tending to Mia’s special needs has kept me just this side of survival mode for most of the past four years. Each year as we approach her birthday, I have a little bit of PTSD as I remember how intense it was at the beginning, the not knowing was as intense as the actual day-to-day realities.

But, here we are, approaching four years and I am starting to feel really different. I feel great joy at seeing Mia blossom in every way. I’ve been able to make enough time and space to blog here, to share some of our exciting triumphs and ongoing challenges. I have enough perspective to celebrate our accomplishments as a little family.

We have a dinnertime ritual of sharing a rose, a thorn, and a bud where the rose is something good that happened, the thorn is something challenging, and the bud is something that you’re looking forward to soon. Tonight, I shared a combination rose and bud. I told Zoe and Mia and our au pair that I am really happy because today, I got e-mail from Dr. Karen Pape whom I wrote about in my Neuroplasticity post and wrote to within the past week with some questions and observations. She replied today and wants to feature excerpts from my Monkey Mia post in her blog and direct her readers to my blog. This feels like such an honor.  Her vision is maximal recovery from early neurological injuries so each child can achieve his or her personal best. At the dinner table, we all celebrated the news, Mia for learning the monkey bars, Zoe for being her inspiration and cheering her on, Citlali for taking her to the park and sharing the joy I have in seeing these skills emerge. What a gift.

All the while, Mia feels like she can do anything. And, that’s by design. Here she is enjoying a rope swing yesterday!

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Constraint Induced Movement Therapy

This may be my longest post so far as part of my streak in the month of May to spread awareness about pediatric stroke. Please consider donating to support Children’s Hemiplegia and Stroke Association, an organization that has helped our family tremendously with support and information.

When Mia was nearly 12 months old, her physical therapist suggested that a splint might help her right thumb abduct better. She tended to keep it tucked in next to her hand. With my Feldenkrais orientation, I was really opposed to any kind of stretching for Mia’s right hand, wrist, or arm. I didn’t want to splint her right arm. From what I knew, that would only cause her brain to work harder against the resistance of the splint. So began a research project that led me to Children’s Hemiplegia and Stroke Association (CHASA) which helped me discover Constraint Induced Movement Therapy (CIMT), and make my own conclusions about what to try with Mia.

Here’s Mia on her first birthday, chewing on a watermelon rind that she’s holding with lefty. You can see that her right hand is in a fist and her right thumb is tucked in between her index finger and her middle finger. This was a common position for Mia at that age.

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When Mia was first diagnosed, I think I did find CHASA but I didn’t want to sign on to the support group there. I don’t know if it was because I was in shock, denial, or just didn’t want to fully identify with the group. I was doing everything I could to ensure Mia’s recovery. In any case, after a year, I was on a mission to avoid the recommended splint for righty, and needed to search the archives of posts of other families who were dealing with similar challenges, similar decisions. I found many discussions of splints for the affected hand and also for the unaffected hand in the context of CIMT. So what is it?

Constraint Induced Movement Therapy is an approach where you restrict the movement of the unaffected hand and arm, usually through casting or splinting it, so the person is given the opportunity to learn to use the affected hand and arm, of necessity. Intensive therapy is given at the same time so progressively more challenging tasks can be mastered over a period of days or weeks. Often, significant improvement can be seen over an intensive period of a few weeks. This work was pioneered by Edward Taub in controversial research with monkeys but later accepted for adult stroke patients and more recently adapted for kids.

I found all the articles I could on pediatric CIMT, took them with me on vacation, read The Brain That Changes Itself, and went to the pharmacy for self-adhesive ace bandages to use to fashion my own constraint for Mia who was just starting to walk but still crawling quite a lot. I wanted a constraint that limited her ability to use her left fingers but allowed her to crawl and pull to standing. I covered the bandage with a sock. Mia’s vacation was spent with her left hand and wrist in this constraint for all her waking hours except if we went swimming. She played on the beach like that, she ate like that, she seemed to adapt.

Here she is at 12 months old, working hard to get a blueberry into her mouth.

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I had some tough conversations with family members and strangers. Everyone wanted to know why I was taking away her “good hand.” Strangers wanted to express empathy that my baby had broken her arm. But, then if I replied that she’d had a stroke, they were in shock. I was learning too, dancing between sharing our truth, and just getting on with helping Mia. In that week, Mia gained some skill with her grasping and releasing. I brought out new toys and fun finger foods. Food is highly motivating so if she was successful in eating with righty, she’d keep at it.

Sometimes we took the wrap off because it was hot or annoying. Mia started to spontaneously open her hand a lot more to do things like grab a sand shovel while playing in water.

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Over the next few months, I got more professional resources to help support our experiments. We saw a physiatrist, that is a doctor of rehabilitative medicine. She connected us with an occupational therapist who specialized in CIMT at Spaulding Rehabilitation Hospital. Another parent on the Hemi-Kids mailing list referred me to a fabulous orthotist who made a hot pink neoprene splint for Mia to wear on lefty.

Here’s Mia playing with a magnetic monster with righty and sporting her new splint on lefty. She was 15 months old.

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Once we had that splint that was easy to put on and take off, we tried a new routine where the splint was just another thing that Mia had to put on each morning while getting dressed. She wore it from about 7 am until 10:30 am so she ate breakfast at home with righty and snack at daycare also with righty. I oriented her daycare teachers about good activities to do in the classroom – lots of sensory stuff like sand, rice, beans, water and shaving cream, puzzles, toys, balls.

Mia could point well with her right index finger by the age of 2 years.

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The splints that Mia has had all stopped below the elbow so she could always do bimanual things too. That helped cut down on frustration. Mia eventually outgrew the pink splint and by then she was old enough to request her own color – green! By the time she was 2.5, she had developed both the ability to point and a decent pincer grasp. She had also developed the ability to take off her splint and she started to protest wearing it every day. So we stopped.

By then, Mia could respond to verbal prompts to, “Give righty a turn.” Or, “Use both hands.” Or, “High five with righty!” Try asking most 2-year-olds to do something with righty or lefty and they won’t know what you’re talking about. Typically, handedness doesn’t develop until age 3.

Here’s a video of Mia working hard to do a puzzle, she’s practicing her pincer grasp and doing a nice palmar grasp and working on supinating too, that is to rotate her arm so her palm is up.

Neuroplasticity

This post is part of my streak of posts in the month of May to spread awareness about pediatric stroke. Please consider donating to support Children’s Hemiplegia and Stroke Association, an organization that has helped our family with support and information.

When 8-month-old Mia started to crawl with her right hand fisted, it was unclear when she’d be able to open that hand consistently and at will, unclear that a month before turning 4-years-old, she’d be able to teach herself to swing like a monkey. But, here she is doing that. I think neuroplasticity can explain it, and all the supports that I have put in place for Mia to continue to learn.

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My own journey with neuroplasticity began more than 20 years ago when I first experienced the Feldenkrais Method® via an Awareness Through Movement® class in La Jolla, California. Moshe Feldenkrais was way ahead of his time, inventing a method to rehabilitate his knee based on his knowledge of physics, judo, and his observations of how babies naturally learn and develop. He soon found applications for all kinds of people of all ages who wanted to improve their functioning. I went to that same class every Thursday at 6 pm for six years all through graduate school and my postdoc. I went initially to help heal a shoulder injury suffered shot putting in high school and exacerbated by playing varsity ice hockey in college. I kept going because the lessons taught me something about myself, about going at a pace that was not my habit. I moved to Ann Arbor, had enough disposable income to seek private Functional Integration® lessons. After a year, I moved to Massachusetts where I still live and once again, I sought out new practitioners. After a few years, I still couldn’t get enough so I entered a professional training program in New York City for four years in the Feldenkrais Method.

It’s as if my apprenticeship in the Feldenkrais Method perfectly prepared me to parent Mia with acute mindfulness about her development and the power of neuroplasticity that modern science is now substantiating in concrete ways.

Through Children’s Hemiplegia and Stroke Association, I am part of a mailing list for families of “Hemi-Kids” – that is children who have impaired use of one side of their bodies. This week, on the Hemi-Kids list, I read of Karen Pape, a neonatologist who has a very progressive approach towards treating children who had early neurological problems. She has a fascinating Ted talk on her site.

Pape’s ideas are completely aligned with those of Moshe Feldenkrais and with how I have been parenting Mia and advocating for her for nearly four years. Habits can get in the way of better functioning and the best way to shake up habits to retrain the brain is to introduce novelty in a challenging situation where some focus is required. In Pape’s Ted talk, she shows a little girl reaching above her head with both arms while standing. She has difficulty doing so fully with her left arm. But, when asked to do jumping jacks, the extension is much more complete and natural. When I saw that, I was immediately reminded of Mia’s monkey bar adventures from last Friday when I captured her extending her right arm beautifully to accomplish her own self-defined goal of mastering the monkey bars.

Zoe is 6 and Mia is nearly 4 and so Zoe has a lot more questions about Mia’s differences than Mia does at this point. In a recent conversation, Zoe stated, “Mia has had two things wrong with her body, her ears and her righty.” As a baby, Mia had recurrent ear infections, ear tubes, and recently a procedure to remove the one tube that didn’t fall out on its own. I reframed for Zoe and for Mia who was in the car too. I offered, “There’s nothing wrong with Mia’s right arm or hand. She had a stroke near birth and that injury in her brain means she needs to work a bit harder and smarter to learn to use righty.”

Pape asserts that baby brains recover better than adult brains in rats and monkeys and she thinks humans too, though not enough research has been done to fully validate the human conclusion. I believe it to be true too since young brains start out as a tabula rasa. Pape’s vision of continual improvement being possible is consistent with my view that the sky is the limit for Mia’s functioning and potential. One of my favorite Feldenkrais quotes goes something like this, “Make the impossible possible, the possible easy, and the easy elegant.”