Tag Archives: stroke

Mia Changita

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.

Pediatric Stroke Clinic – 6 Years Old

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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 all 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.

My Last Daycare Check

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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.

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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.

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Case Study: Ponytails and Folding Socks

Zoe is a great inspiration to Mia. Just this morning, Zoe put her hair in pigtails, and before I knew it, Mia had too. Zoe is seven. Mia will be four years and nine months old tomorrow. Zoe wasn’t even aware of the idea of doing her own ponytail or pigtails until she was in kindergarten last year and saw a classmate doing it. Mia has the good fortune of watching Zoe do everything day after day so she gets the idea that she can too.

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I don’t always see it coming with these new challenges that Mia defines for herself. A couple of weeks ago at bedtime, I noticed that Mia was brushing her hair a ton with leave-in-conditioner and getting frustrated with the tangles. I thought her frustration was related to hairbrushing. It wasn’t until the next morning, when I was sitting on the couch reading to them and Mia was attempting a ponytail and getting frustrated and then going into the extensive brushing routine again that I realized her quest to give herself a ponytail.

Mia is very dominantly left handed and she can do a lot with her right hand, especially in bimanual (two-handed) activities, but learning a new skill behind her head seemed pretty daunting to me as the observer.

So, here’s what I observed in an e-mail I sent to her occupational therapist. “Mia has embarked on teaching herself to do a ponytail on her own hair. She has many of the concepts and steps but not all so is getting frustrated. I am looking for ideas and ways to support her. She puts the elastic on her left hand, uses both hands to gather the hair into her right hand to hold it there. She uses her teeth to get the elastic from her left wrist onto her left hand, and then manages to get it around the bunch of hair somehow but gets frustrated and stuck after that. She then claims her hair is tangled and embarks on a lot of spraying of leave-in-conditioner and brushing with her left hand which migrates her part further to the right. Can you help Mia work on this, break it down, etc?”

Then, I went online and searched for “one-handed ponytail” and posted to ask other families with stroke survivors for their experience with kids learning to do ponytails. One replied that her daughter had learned at age eight. Another told me how ambitious Mia is to be attempting this so young.

I thought about putting out elastics of various size and texture to let Mia experiment. But, life is busy, and I haven’t done much to support her, and still she’s learning, very much on her own initiative and with the ongoing model of Zoe.

At Mia’s weekly occupational therapy, that first week of March, they talked about how frustration comes with learning something challenging. They experimented with doing things in front of Mia so she could see and feel to get the concepts more solid. The therapist even offered that Mia could try on her hair. Instead, they made a bunch of yarn to use for practice. And, in that way, Mia learned the concept of twisting and doubling over the elastic to loop it through a second time.

I’ve seen Mia successfully make a ponytail in her hair once. Even doubled over, the elastic was too loose and fell out after about half an hour. I had no idea she could do pigtails, and since I didn’t see her doing them, I don’t know exactly how she managed, except that she must have reached over around her head to do the major work with lefty.

Since I don’t have good video of her working on this new skill, I thought I’d share another recent clip of a different self-defined fine-motor task. I got the girls new socks and Mia set herself the task of folding them all into balls. Enjoy and look to see how she uses her two hands differently. And, if you listen, you’ll hear Zoe in the background, alternately vying for attention and cheering Mia on as she folds socks. That’s our normal. Zoe said just this morning, “Mia’s learning early with the pigtails and ponytails!” Mia’s persistence, determination and inner drive are all quite remarkable, even more so because she’s not yet five.

Update from March 21, 2014

I managed to capture a video of Mia making a pigtail. Notice how she gives each of her hands different jobs at every stage of the process. And, you can see her moment of pride as she accomplishes what she set out to do. Enjoy!

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.

Gymnastics Update – December 2013

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.

Preparing for First Hockey Season

My girls think it’s hysterical that my first hockey shin guards were improvised, soccer shin guards paired with foam knee pads. That didn’t hold me back. I played one year with boys, starting when I was eight, and then joined the girls’ league. I went on to play Division I hockey at Brown University, just as the game was shifting to a more competitive level.

Two weeks ago, I signed the girls up for hockey and myself up to coach. The season has already started, but soccer still fills our Saturdays for another couple weeks. After figuring out that their skates still fit, and Zoe had a helmet, but Mia did not, we went shopping. I bought full sets of equipment the first weekend we decided the girls want to play but we hadn’t had time to touch it since. Sunday, they tried it all on, I showed them how to tape their sticks, we labeled it all with their names and color-coded tape (green for Mia, pink for Zoe), and the girls got so excited that they wanted to go to public skating.

October 2013 – Mia 4.25 years old, Zoe 6.75 years old
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It was not crowded, skating was fun and leisurely. Both girls wore their hockey gloves. Mia brought me her right one and asked for help to find spots for each finger. She kept it on easily throughout the hour of skating.

Both girls picked up where they had left off with their skating after a season of lessons last winter. Zoe was too fast to capture well on video in the low light. She progressed a great deal last winter, which was the first year when it was feasible for me to take both girls skating regularly, both to open skate and to weekly lessons for four months.

Here’s a moment when Zoe wanted to skate with Mia. For me, it was so lovely to be on the ice with them both. They needed much less help from me than last year, or any prior year, and I can glimpse ahead that in a few years, they’ll be skating circles around me. Zoe told me that she feels lucky that I know all about the equipment and about hockey. She has noticed that most of the soccer coaches are men and it already makes a difference to her to have me there on the ice with her.

In this tiny clip, I captured Mia falling and getting up quickly and easily. Anyone familiar with hockey knows this is the first and most important skill. The notable moment of this video for me is that to stand up, Mia first stands her right foot. Last winter, she used her left foot exclusively. Her right side is the side affected by her stroke. I’m so happy to see her using both sides now to fall and get up. And, I was also happy that she was able to manage her glove on her right hand.

The girls wanted to stay to watch the Zamboni clear the ice but there had been so few skaters that they didn’t need the Zamboni. I promised many more opportunities to watch the Zamboni.

Just to show our history of attempting to skate each winter, here’s a photo log. We missed one winter when Mia was an infant.

January 2008 – Zoe, 1 year old
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January 2009 – Zoe, 2 years old, with Mara (pregnant with Mia)
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January 2011 – Mara helping Mia get her skates on
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January 2011 – Mia, 18 months, with Mara
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January 2011 – Mia, 18 months
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January 2011 – Zoe, 4 years old
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Thanksgiving 2011 – Zoe, almost 5 years old, with cousin Alex
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Thanksgiving 2011 – Mia, 2-and-a-half
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Thanksgiving 2012 – Mia, 3-and-a-half
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Thanksgiving 2012 – Zoe, almost 6 years old
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October 2013 – Mia 4.25 years old, Zoe 6.75 years old
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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.

HandsBenchIthaca

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.

Mirror Neurons – Who is the Mirror?

Butterfly Hunting

We’ve been traveling a lot. This picture is from this past weekend when Zoe and Mia spent a lot of time hunting butterflies in Vermont.

Modern neuroscience is fueled by brain imaging and many new theories about how we learn what we learn. One such concept is that of mirror neurons, that by watching someone else do something, one can gain neural activity in the corresponding neurons.

Another is that “Cells that fire together, wire together.” This theory is attributed to Donald Hebb but popularized by Norman Doidge in The Brain That Changes Itself, worth reading for anyone interested in better understanding neuroplasticity.

A friend shared a short TED Talk with me that I include below. It’s an honest emotional account by first time parents of a young stroke survivor who is a year-and-a-half younger than Mia. Much of it resonates with me. While I was not a first-time parent, I was taking a leap in having a second child as a single mother about to turn forty. When Mia was a full-term healthy baby weighing 9 pounds 5 ounces with excellent Apgar scores, I was relieved and so happy. I too was not ready for the sudden hospital transfer when Mia was two days old, the news after many tests that she had had a stroke. I also asked impossible questions. Why me? What will she be like? What can I do to make her better? Mia wasn’t part of a Mirror Neuron Pilot but she has piloted her share of therapies and approaches. She has definitely taught me more than I’ve taught her, and she is an incredible gift. As the parents in the TED Talk conclude, “Consider what you have as a gift, what you miss as an opportunity.”

When Mia was about two months old, a wise friend gave me sound advice to love her as a whole child, not less than because of her stroke. There’s been an active discussion within the community of parents of pediatric stroke survivors about the risk of treating the affected arm or leg at the expense of the child’s sense of wholeness. Many of these kids face challenges with anxiety as older kids, teenagers, and young adults. And, their parents find themselves wondering once again if they chose the right therapies to do and not do.

I embrace the approach of the parents in this TED Talk. Shower all children with love, and show them what you know and love. The world is an incredible mirror. They will find their way.