Category Archives: Pediatric Stroke Awareness Month 2013

Vision Statement, IEP 2013

This is one in an ongoing streak of posts everyday through May to raise awareness about pediatric stroke. If you’re able, please contribute to my fundraising efforts.


This vision statement below is also something I had to write to prepare for Mia’s Individualized Education Program (IEP) meeting on Friday. I’ve been writing this kind of statement at least once a year since Mia was an infant. Before she turned three, she had Individualized Family Service Plan (IFSP) meetings and documents. Now that she’s three, she has an IEP.

Last spring, I was very anxious as we approached her first IEP meeting. When she was receiving Early Intervention services from about 1 month until 3 years, she qualified simply due to her diagnosis. They have a list of diagnoses that automatically qualify and stroke is on it. Every six months, they would adjust her services based on her developmental needs but there was never a question of her not qualifying. The Early Intervention program is pretty warm and fuzzy, at least in our experience. They made house calls to visit Mia at home or daycare, and the support is for the whole family. We didn’t need many of the supports they could have offered but I felt glad knowing that if someone needed help with transportation or interpreting what doctors were saying, they’d do all that.

The rules change once kids turn three. Services are only approved if a child’s impairment limits their ability to learn in school. I educated myself by attending a couple of workshops run by Federation for Children with Special Needs. These workshops scared me. The parents who teach these workshops have become advocates and teachers because of really awful situations where services were denied. I feared a very adversarial first IEP meeting. I took our former physical therapist with me to that meeting. The meeting was fine. The public preschool occupational therapist said Mia barely qualified. The public preschool physical therapist said she didn’t qualify. That was fine with me as I wanted Mia to have occupational therapy but not physical therapy. I requested that Mia get to work directly with the occupational therapist instead of the occupational therapist assistant. I also requested an 8 am time slot. All of my very reasonable requests were honored and we have been working with the same therapist since September. She’s told me that she plans to recommend Mia continue occupational therapy one more year so I’m not particularly nervous for Friday.

Here’s the vision statement.

Vision Statement for Students Eligible for Special Education

Parent: Mara
Student: Mia

1. My child’s strengths are:

Mia is happy, curious, motivated, has good attention, perseveres, has strong problem solving skills, and is very empathetic.

2. My child’s areas of significant interest are:

Mia loves books, climbing, jumping, running, riding her bike, doing the monkey bars, talking, singing, puzzles, arts and crafts, playing with her sister and her friends.

3. My concerns about my child’s educational progress are:

Given Mia’s medical history and limited functional use of her right arm and hand for fine motor tasks, I am concerned primarily with optimizing her dexterity for an increasing range of tasks of daily living and learning. I am concerned about both fine motor skills needed for academic tasks like coloring and writing and skills needed for independence in manipulating the objects in her daily life like clothing and food containers so she can be as independent as her peers with toileting, managing her snack and lunch, and helping in the classroom.

4. My goals for my child over the school year are:

I expect Mia to adapt to her new preschool classroom (transitioning in June) and fully participate in all classroom activities developing socially, emotionally, physically, and cognitively as appropriate for a 4 year old.

In terms of Mia’s functional use of her right hand and arm, my goal is that Mia gains control and dexterity to do increasingly complex functional tasks that require her to relax excess tone, supinate her arm, and use differentiated movements of her thumb and fingers. I believe that strength and dexterity support each other. As Mia can do more, she will gain strength, which will support her further development.

5. My vision for my child over the next three to five years is:

Over the next three to five years, I expect Mia to enter elementary school with her peers, capable of mastering the independent skills of learning and the life of the school needed to thrive in her early elementary years.

Potty Talk

We have a lot of potty talk around here. At dinner tonight, it started as the game of telephone where each person was supposed to keep the same first word and change the rest. The variants ran along these lines, “Poopy, patter, paw, paw!” And so it goes. I let the potty talk go on freely, hoping it will help everyone feel less inhibited with the actual act.

Humor is essential here as it’s a mighty serious subject and without some levity, I would have lost my mind a long time ago. This may be the hardest aspect so far in parenting Mia through her recovery from her stroke. It may be too much information for some of you but I am sharing it so it’s not such a taboo subject as I think that just makes it that much harder.

First the facts. Both of my girls struggled some with constipation as older infants and toddlers. Zoe learned relatively early to use the potty for both pee and poop, well before age 2.5. And, at around 2 years 8 months, she complained that the night time pullups were giving her a rash and went cold turkey.

Things with Mia have taken a different path. Her constipation was a bit more intractable. I asked her neurologists about it when she was 2. They denied any relationship between her stroke and digestive issues. This is interesting because among the families on the Hemi-Kids mailing list and Facebook group it is a frequent issue for kids who have had neurological injury early in life. Conventional treatment is to use Miralax but that’s not actually been demonstrated to be safe for children for years on end which is how it’s often used. I was uncomfortable going that route. So, as usual, I researched and experimented until I found my own way.

Last February when Mia was 2 years 8 months old, we were on vacation and she hadn’t pooped in a few days. When she finally did, we completely changed her diet to cut out most grains and dairy. She went 4 days in a row and spontaneously started to ask to pee on the potty. At the time, I thought this was our breakthrough and we’d be doing the elimination diet for a week or two more and then slowly reintroducing foods to figure out which ones to avoid. Here we are more than a year later.

The elimination diet was not the magic bullet. We tried an even more strict version of it with everything homemade from whole foods, absolutely no packaged or processed foods at all for a month. Try that. Completely impractical for me as a working single mom. We introduced probiotics. I started buying raw milk and fermenting my own kefir to make smoothies every morning. And, we started a behavior-based program called Soiling Solutions last June. It’s essentially a program to help Mia poop every single day. Thankfully, our new pediatrician is on board with this approach. At least she was last year when I shared a letter with her explaining it. We’ll see what she says at Mia’s four year well visit.

We schedule our “poopy time” to be right after dinner. The program consists of up to four rounds of this routine – sit on potty for 3 minutes, relax and play elsewhere for 10-12 minutes, repeat. On the best days, she goes on her own before the designated time. On the worst days, it takes an hour including a gentle inducer (glycerin suppository) after the second unsuccessful sit and occasionally a more harsh inducer (saline enema) after the fourth sit if she still hasn’t produced.

When we started this last June, it was pure torture for Mia, me, and Zoe. Zoe became the hero because in the early days we were having to do the full routine almost every day and since I was bad cop, Mia needed Zoe to comfort her. Now, it’s almost Pavlovian. We use kitchen timers for the 3 minute part and the 10 minute part. The girls watch a show on Netflix Instant in between the sits and Mia likes to pause the TV when she goes to sit. She still asks for Zoe to sing or hum to her if we have to do “bum bum blastoff” which is the name they coined for the suppository because it looks like a rocket ship, of course.

Even this protocol has not completely resolved the issues but it does ensure that Mia goes every day and that means she can be in underwear at school and all day, staying clean and dry which is hugely important for her self esteem.

She goes more often on her own initiation than she used to and I keep hoping that soon she’ll figure out she can go on her own all the time. But, in the meantime, we have a strict routine that we follow 6 nights a week. The one night I am out for the evening, our au pair asks Mia to sit and she occasionally poops for her. But, more often, she skips a day and then spontaneously initiates on her own sometime the following afternoon.

We’re gluten-free at home and a bit more flexible when out and about, but still really careful. I still make kefir from raw milk and send smoothies with Mia each morning. Zoe has a love hate relationship with these smoothies. I  like them. Mia has special gluten-free treats in the freezer at preschool so she can have something at times when others bring in birthday cupcakes. Her teacher checks with me regarding ingredients if they are doing a class baking project or taste test.

We ended the evening with another potty ditty, “Girls go to college to get more knowledge. Boys go to Jupiter to play with all the poop there.”


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.


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!



It’s Sometimes Tough to Be the Big Sister

Continuing my writing and fundraising Streak for Mia, I am going to attempt to share something that’s tougher for us right now.

Zoe was nearly two-and-a-half when her world was changed by the birth of Mia. She had my full attention for all that time. It can be hard for older kids to adjust to a new member of the family under ordinary circumstances. But, the days, weeks, months, and years since Mia’s birth have been a little out of the ordinary, with a crisis time around when Mia was diagnosed and then a lot of ongoing extra needs that have consumed my time and energy. Zoe notices. It’d be hard for her not to notice.

Zoe is 6 now. Here she is this morning at our CSA farm where we spent the morning working and playing. Zoe and Mia got to spend a couple hours in the Children’s Garden while I helped plant and weed in the flower beds.


Zoe is delightful, smart, funny, very intense, and rather competitive. She is quite agile, loves art, is comfortably speaking Spanish at school and with our au pair, and has a phenomenal attention span for chapter books. The reading streak that Zoe and I have going is now on day 234! Mia sometimes joins us but it’s Zoe who is the one asking for and choosing book after book, requesting chapter after chapter. It’s the one sustained thing that she and I have together that feels very connecting for her.

She’s had a challenging time at school for the past 5 months of Kindergarten and just got a new teacher two weeks ago so we’re in a stressful transition time, working toward a positive end to the school year.  I’ve been struggling since January to make sense of her difficulties at school. I have had many theories and done many experiments to try to help. The latest one seems like it may be closer to the root. Clearly, there have been classroom issues or they wouldn’t have abruptly changed the teacher with just seven weeks left in the school year. But, now that I know the kind of behavioral challenges Zoe is having at school, I see many of them seem to be related to the world not being fair. It’s not.

Last night, I started to talk with Zoe in more detail about what happened when Mia was born and in the NICU and how that might have felt to Zoe. We talked about all of Mia’s appointments and all the extra time she gets with me because of her stroke. Zoe was engaged, attentive, and at times upset and angry. She also had new insight when she told me, “I’m lucky.” I asked her why and she explained that she only has one thing wrong with her, big tonsils. She doesn’t like it when the doctors say she has big tonsils, she feels self-conscious about it. She asked me just last Saturday on the way to the doctor how many doctors she has compared to Mia, and she told me that Mia has had two problems – her ears and her right hand. I helped her reframe to focus on Mia’s stroke. Mia was in the car.

After our talk last night, I glanced at Facebook and Zoe was still with me. She saw a picture of a boy with some kind of bandage or cap covering his head and asked about it. I explained that boy had just had a hemispherectomy, a procedure to take out part of his brain so he wouldn’t have seizures any more. She had lots of questions and more empathy than usual. We talked about how that boy may have a sister or brother who might have feelings too. She got it. I hope we’re making progress. It’s true, life is not fair.

At every age and stage, Zoe is a bit older, a bit ahead on her ability to ask questions and that’s pushing me to figure out the language to use in front of Mia and Zoe to help them both feel whole, well, and fully part of our little family.

Here they are, in the Children’s Garden sandbox, playing nicely together.


Mia Practicing Writing her Name

First some news. My Streak for Mia is raising awareness about pediatric stroke, raising money for Children’s Hemiplegia and Stroke Association, and giving me a chance to share our story with friends and family and others who can learn from our experiences. All that’s been very rewarding to me. I enjoy writing for a purpose and feel gratitude that my efforts are being recognized in many ways. I was honored to be invited to be a guest blogger for the blog. Thanks to generous donors including many of my coworkers, my fundraising total is up to $2560 including an anticipated match by my employer. Thank you for reading and for supporting us!

Mia had her weekly session of occupational therapy this morning. I had suggested she put on a sweatshirt. She found one and was working on zipping it all by herself. Then, she asked for her favorite vest which has a zipper that she has completely mastered. I got the vest and another on the same hanger. All of a sudden, Mia appeared beaming because she had zipped the sweatshirt and both vests!

We managed to get out of the house after some typical weekday morning craziness for the 8 am appointment. I hesitate to share all of Mia’s accomplishments with her therapist for reasons that have nothing to do with her therapist and everything to do with how services are determined for children with special needs in Massachusetts. I did show her a video of Mia riding her bike last week. I was wanting to share the pictures of Mia on the monkey bars. And, with Mia’s permission, I wanted to tell her that Mia had zipped all three zippers herself this morning. But, I didn’t want to tell her these things if it would jeopardize Mia’s chances of continuing to receive occupational therapy for another year.

Last week, the therapist said she goes back and forth on what to recommend but she plans to suggest we continue another year. Mia’s pride and mine were too strong not to share this morning so we told the story about the zippers, and we showed pictures and videos of the monkey bar adventures. She had tears in her eyes with joy to see what Mia can do on her own.

They went off together for the half hour therapy session. Last fall, I had advocated to be allowed to join in for the last 10 minutes to see what they were doing and learn some things to do at home but since the Newtown shootings that’s no longer permitted. So, I get a brief update in the school entryway after Mia’s session about what they did. Today, the occupational therapist shared this awesome picture. Mia had tried to write her name and she gets the letters kind of mixed up, upside down, backwards. So, this is a subsequent attempt with dots to help. Proud Mia, proud Mommy!



This post on bicycling is 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.

Both my girls started riding balance bikes (2 wheels, no pedals) when they were two years old.


In late March, Zoe asked me to go to the bike store to look at bikes. She’d been outgrowing her 16″ bike which she rides well. I had raised the seat but then the handlebars were too low. Of course, Mia also chimed in with, “I want a new bike too!” That wasn’t part of my original plan. She was on track to stay on the balance bike a while longer and then get Zoe’s 16″ hand-me-down.

For historical reference, Zoe could ride her Skuut balance bike the mile to their daycare before I got her the 16″ “pedal bike” which was in the spring after she turned 4. We skipped training wheels. The 16″ bike was a little too big. She could pedal right away and balance and steer but it took her a while to be able to start and stop with confidence and she went back and forth between the balance bike and the pedal bike for more than a year before things clicked on the pedal bike.

On that shopping day, I ended up getting Zoe a 20″ bike with hand brakes and gears. It seems like she is a really big kid all of a sudden. She can ride it well and independently. I even let her go up and down the street by herself. She’s good about going to the side of the road when a car is coming.

Mia fell in love with a little red 12″ pedal bike so I indulged her too. Mia could pedal, balance, and steer on day 1. She still needed help to get started over and over again, but she mastered her 12″ 2-wheeler faster than Zoe did the 16″ just because it’s more her size. Bicycling is an excellent skill and activity for Mia with her right-side challenges as it requires that she use her whole self in a balanced way. The grip on the handlebars and the pressure up through the arms is good for her. On her first day, she seemed to need to look at her feet to make sure they are on the pedals and some of that could be that she’s learning but some could be that she uses her eyes on the right foot particularly since her sensation is less developed there. I kept reminding her to look up at Zoe who was off in front most of the time.

Here’s Mia after just three weeks on her new pedal bike. She can pedal, steer, turn around to come back, and stop in a controlled way. You may notice that she does let go first with her right hand when stopping at the end of this video. Since that video, she has taught herself how to start on her own, all before turning 4 in June!

My lessons from this experiment in supporting two children in learning to ride bicycles:

  • Balance bikes are awesome! Kids learn to balance and steer and go fast without also dealing with pedals.
  • It’s possible and faster to skip training wheels.
  • The right size bike makes learning much easier. I don’t mind that Mia will outgrow her 12″ bike after a season if she has used that season to master the skills.

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.


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.


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.


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.


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.


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.


It’s hard to find time to post every day. Right now my girls are taking a bath together splashing up the bathroom. I’m going to make it quick tonight with a photo celebration of their sisterhood.

Here’s Zoe holding newborn Mia, before Mia showed any signs of seizures or stroke. Mia is sucking her thumb and Zoe is studying hers as if to learn how.


Zoe got to visit Mia in the NICU.


Zoe and Mia both mastered their balance bikes. This is from August 2012. Zoe was 5.5 and Mia was 3.


And, this spring, Mia has learned to ride her pedal bike. They both skipped training wheels and went right from balance bike to pedal bike.


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 tremendously with support and information. My employer will match donations from coworkers so your gift can be doubled.


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.



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.”

Happy Mother’s Day

This morning, my girls raced down to our au pair’s bedroom to gather their stash of cards for me. They brought them up to me and some flowers too! That was novel to receive flowers for Mother’s Day. Mia had made her card during her past two sessions of occupational therapy. Zoe made one card in art class and another on her own.

Zoe was recovering from strep throat, which sadly arrived on Friday night, so we had a kind of quiet morning. Zoe and Mia got crafty with some headbands and at one point, Zoe wanted to show me all of them and asked me to post the picture – so here she is in all her headband glory!


In the afternoon, we managed to get out of the house and Mia buckled herself into her carseat for the first time. She’s been doing the top buckle for a while. As I went to help her with the bottom buckles, as usual, I found her grinning with her own accomplishment, “Mommy, I did it all by myself!” I’m pretty excited about this milestone too. As Mia gets more and more independent, I find we are entering a new era where both girls can help quite a bit more and so some of the labor of mothering shifts.


We ended the day with a brief visit to a small carnival that was set up near our house. Here are the girls in the little car ride that they enjoyed twice. All three of us also got to go on the Ferris wheel twice. No pictures of that though as I couldn’t figure out how to take one without worrying about dropping the camera.


After the carnival, Mia didn’t want my help with her buckles and she managed to get two of three together but was struggling with the final one as she was tired. She asked for help. But, now that she knows she can do it, I expect she’s persist until she is fully independent with buckling. Unbuckling is still challenging for her and I’m okay with that.

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.