Author Archives: mara

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.

20140318-210659.jpg20140318-210712.jpg

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!

500 Days of Reading Aloud

Today marks 500 consecutive days of reading aloud to my children. We’ve been recording every book we’ve read. If you want the full list, check out our Reading Streak page. Most of the time we have at least two chapter books going in parallel, one chosen by Zoe and one chosen by Mia. I make suggestions too but the girls have veto power.

Right now, we have three books in circulation. We are reading “Saige Paints the Sky” and “Charlotte’s Web,” and we are part way through our third reading of “The Long Winter” expecting to finish it after Saige.

Our reading streak means many things. It means that we make time for 10-20 minutes of reading every morning, even on school days. We alternate whose day it is and so on Sundays, Wednesdays, and Fridays, Zoe gets to hear her book being read first. On Mondays, Thursdays, and Saturdays, Mia gets to hear her book first. Tuesdays, I choose theoretically, though both girls lobby for me to let them go first on my day.

Our reading streak also means lots of bedtime reading snuggles. We don’t time our reading at night, we finish chapters, and occasionally get to read extra, depending on how late it is.

And, our streak means math. We log what we read each day with the date and the day of the streak. As Zoe pointed out this morning,, “Five hundred is half way to one thousand.” She’s got big goals, and seems to want this streak to go on and on.

Zoe wanted to celebrate the reading streak with an extra big dose of reading this morning, five chapters for each girl. Mia was done after listening to two chapters of “Charlotte’s Web” and Zoe didn’t want me to stop after I read her five chapters of “Saige Paints the Sky” so I read the final two chapters, a reading marathon on a day when we skipped Saturday morning hockey as Zoe was performing in “The Wizard of Oz” as a jitterbug and cyclone. We also celebrated today with twilight sledding and pizza for dinner.

And, uncharacteristically, we skipped bedtime reading to spend time cuddled together on the couch watching the Olympics, “because we read so much this morning.”

Recently, we had to adapt the rules of our streak to allow for a guest reader. Thankfully, the girls’ Uncle Steve was delighted to fill in for four days while I was out of town.

Zoe continues to want to see through our Little House theme. We are on our third reading of book 6 (of 9) of the Laura books. Then, we’ll likely read the Rose books one more time to complete the chronological reading of all five generations of Little House women. It’s been quite a journey through history and geography.

Meanwhile, Mia has continued to return to “Charlotte’s Web” again and again. We may be on our ninth reading. Zoe practically knows it by heart now so if I misread some sentence about a “fish getting a friend,” Zoe is quick to tell me, “It’s fried, Mommy, not friend!”

But, we have branched out too. Mia found the “Freddy” series at the library, and we enjoyed the first three books of the golden hamster saga. The fourth got scary and so we stopped reading that.

Both girls have recently discovered American Girl dolls and associated books. So, we’re working our way through the two Saige books and have read the first Molly book. We currently have all the other Molly books out from the library. Molly books are set during World War Two, so we’ll be delving into some new themes and questions with that series.

I also keep a list of suggestions from others and books I want to introduce to the girls. And, I make extensive use of our library through online requests that get delivered to our local library.

All three of us are proud of our reading streak. I love that the best celebration for its longevity is to read more!

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
20131029-214955.jpg

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
DSCN9235

January 2009 – Zoe, 2 years old, with Mara (pregnant with Mia)
DSCN9742

January 2011 – Mara helping Mia get her skates on
P1080011

January 2011 – Mia, 18 months, with Mara
P1080017

January 2011 – Mia, 18 months
IMG_2383

January 2011 – Zoe, 4 years old
IMG_2384

Thanksgiving 2011 – Zoe, almost 5 years old, with cousin Alex
IMG_4626

Thanksgiving 2011 – Mia, 2-and-a-half
IMG_4629

Thanksgiving 2012 – Mia, 3-and-a-half
P1000520

Thanksgiving 2012 – Zoe, almost 6 years old
P1000521

October 2013 – Mia 4.25 years old, Zoe 6.75 years old
20131029-214955.jpg

Occupational Therapy – October 4

Mia has her weekly half-hour occupational therapy session on Friday mornings. Tighter school security means I can no longer observe. Fortunately, Mia’s therapist takes time to describe what they did together, sometimes using pictures as she did this past Friday. The sequences are so compelling that I want to share them.

Mia chooses where she wants to start and the therapist goes with Mia’s preferences while still keeping her goals in mind.

On Friday, Mia wanted to start in the gross motor area, throwing balls from inside the ball-pit Jump-o-lene into an inner tube with righty.

Here, Mia is carefully using her right hand to pick up a ball. Notice how she is concentrating.

WP_002010

Really beautiful extension with her right arm as she throws a ball.

WP_002016

Cleanup time. Mia spontaneously used both arms to help put all the balls back in the ball pit!

WP_002020

WP_002021

WP_002022

Fine motor practice next. Mia was feeding the ball pennies. She initially tried to pick up the ball and squeeze it with her right hand but that was too challenging so she switched hands and held the ball with her stronger left hand while practicing pincer grasp with righty.

WP_002024

WP_002026

Picking pennies up off the table with pincer is tricky so you can see in the final picture that Mia got creative using righty pointer to slide the penny to the edge of the table.

WP_002028

365 Days of Reading Aloud

Tonight, I gave each of my girls a gift certificate to get a book of their choice at Barnes & Noble this weekend.

A year ago, Zoe and I made a reading promise after I read Alice Ozma’s “The Reading Promise” which I had picked up at the Scholastic book fair on Zoe’s curriculum night for kindergarten. Zoe and I agreed that I would read aloud to her every night for one-hundred nights. Like Alice and her father, we couldn’t stop. We’ve read aloud every day, most mornings and most nights, sometimes only one or the other but more often both for the past 365 days and there is no plan to stop. We’ve read forty-seven chapter books this year and countless picture books. I love reading high quality literature to my girls and love that they seem to have an almost insatiable appetite for listening. It’s usually the first thing we do together in the morning and the last thing we do together before they go to bed. Occasionally, busy schedules mean we skip one or the other on any particular day, but never both. We have made sure of that!

For our full reading list over the past year (and even the year before that before our reading streak was official), check out our Reading Streak page.

Their reading endurance has increased tremendously so I get frequent requests for “one more chapter” which I only am able to honor sometimes.

This summer, we listened to several chapter books either on CD in the car or on my iPhone via Overdrive (digital audio loaned through public library).

  • “Harriet the Spy” by Louise Fitzhugh
  • “Matilda” by Roald Dahl
  • “Island of the Blue Dolphins” by Scott O’Dell
  • “Mr. Popper’s Penguins” by Richard and Florence Atwater
  • “Because of Winn-Dixie” by Kate DiCamillo
  • “All of a Kind Family” by Sydney Taylor
  • “A Little Princess” by Frances Hodgsen Burnett
  • “The Boxcar Children Collection” (all 3 books)

Here are some others we also enjoyed on the car rides that were more accessible to Mia and still enjoyable for Zoe:

  • “The Bippolo Seed and Other Lost Stories” by Dr. Seuss
  • “Horton Hears a Who! and Other Sounds” by Dr. Seuss
  • “Frog and Toad” by Arnold Lobel
  • “Tikki Tikki Tembo” retold by Arlene Mosel
  • “The Velveteen Rabbit” by Margery Williams

Mia has joined in the reading streak, requesting Charlotte’s Web repeatedly and snuggling with us to enjoy part of whatever we are reading.

Our mainstay continues to be the Little House books and we have now covered all five generations of Little House women (Martha, Charlotte, Caroline, Laura, Rose). Just tonight, we finished reading, “Little Clearing in the Woods” by Maria D. Wilkes, which is the third of seven Caroline books. Once we finish the final four books of the Caroline series, Zoe says she wants to read the Laura and Rose books for the third time.

Despite this devotion to the Little House books, we have gradually introduced other books.

We borrow extensively from our local library which conveniently has a branch across the street from Mia’s daycare. And, since many of the titles are out of print or less readily available, I have developed a routine of making requests through interlibrary loan. We also used interlibrary loan and weekly library visits over the summer to read more than fifty of the picture books on the list of suggested reading options for kids entering first grade.

I get inspiration from friends and family who make suggestions and from some lists of books including those from A Mighty Girl and this list of Teachers’ Top 100. We are even using these lists and our emerging favorites to choose books as gifts for the many birthday parties the girls get invited to attend.

We welcome new reading suggestions and look forward to many more days and years of reading aloud together.

 

 

Fall Activities 2013

School has started for both girls. Zoe is in first grade. Mia is in Pre-K. Along with school, come the fall activities. Here are the girls last Saturday at their first soccer games. Mia has a half hour of practice before a half hour scrimmage. Zoe practices on Mondays and plays on Saturdays.

MiaSoccer

ZoeGoalie

Last fall, as Zoe was entering kindergarten, and Mia was moving up to a preschool classroom, and we were preparing to welcome our first au pair, we kept activities to a minimum. Mia had occupational therapy once a week. Zoe joined the cast of her school play in October. And, we waited until November to add swimming and skating lessons.

I wasn’t as careful this fall. Both girls have been asking to play soccer and to try gymnastics. I agreed to both. Zoe swims well enough now that I’ve decided she can continue with swimming lessons in summer camps unless she wants to swim instead of some other activity during the school year. Mia is still learning to swim independently and it’s very therapeutic for her to be in the water so she has swimming lessons once a week.

Activities started last week. Here’s our crazy schedule on top of school:

  • Monday evening: Zoe’s U8 soccer practice
  • Tuesday early afternoon: Mia’s swimming lesson
  • Wednesday right after Zoe’s school: Gymnastics for both girls
  • Friday morning: Mia’s occupational therapy
  • Saturday: Both girls have soccer at various times that sometimes conflict
  • Sunday morning: Hebrew School for Zoe

I expect that Zoe will want to participate again in her school’s bilingual musical, with rehearsals roughly every other Thursday starting in October and going into February.

Zoe wants to play ice hockey. It’s hard for me to resist this one as I played from age eight through college, and more occasionally after that. It’s possible she’ll start hockey in late November after soccer season is finished. She could have started in September but it felt like too much with soccer being brand new. Last spring, Zoe also took an art class which she loved. She’s asked about that again too and I said not now.

I could not possibly do this level of activities without the assistance of our au pair who helps with gear and transportation and snacks. We’re getting ready to transition our second au pair in less than three weeks. I have created a detailed schedule and Google Map with the locations of the girls’ schools and all these activities for she will have to learn fast how to help transport them to most of their weekday activities.

For Mia, the structured activities are definitely therapeutic. Swimming, soccer, gymnastics will all help with balance and coordination. Having some variety is good. I just need to see how the fall goes and find out if we have enough time to integrate all the variety.

I struggle with finding the balance. Is this too much? I want my kids to have down time too. I felt a little better as I sorted through pictures for this post and found plenty of them playing outside in unstructured ways in the past few weeks. I hope we don’t lose that.

Making mud pies
P1020940

Hiking through the woods
P1020963

Riding bikes through the neighborhood
ZoeMiaBikes

Mia just running at the park!
MiaRunning

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.

20130825-214037.jpg

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.

20130825-214018.jpg

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.