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 www.chasa.org 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.
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.”
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.
Before I had Mia, I had no idea what occupational therapy might look like for a child. I had a concept that occupational therapists help people regain the skills of daily living. But, what does that mean if you’re too young to have acquired those skills in the first place?
It turns out, at least in our experience, that the pediatric occupational therapists still focus on tasks of daily living but in a developmentally appropriate way. And, instead of focusing on regaining those skills, they focus on helping the child acquire those skills.
Mia qualified for Early Intervention services when she was just one month old. Her diagnosis (stroke) meant that she was eligible until she turned 3 and aged out of the Early Intervention program. Early on, we worked with a developmental specialist and a physical therapist. But, as Mia’s gross motor skills emerged very much on track for age, the physical therapist started to increasingly do more occupational therapy things with Mia to focus on developing functional use of her right arm and hand. Through the Early Intervention program, we switched to weekly sessions with an occupational therapist who continued to help Mia work on her grasp and release and finger dexterity in the context of play, using toys that required one hand or two. Bimanual activities and toys are particularly motivating.
All the while, I was constantly vigilant to make sense of the therapy she was receiving in the context of my own Feldenkrais training and approach to learning which is rather different from conventional approaches. More on that later in a post focused on Feldenkrais.
The Early Intervention program in our area is wonderful. The therapists made house calls or met us at Mia’s daycare. They really got to know us and when we had to switch from one to another, they took great care with the transitions.
Mia also saw an outpatient occupational therapist who specialized in constraint therapy from when she was one until she was about two-and-a-half. We saw that therapist every few months for ideas related to constraint therapy, which is yet another post. The picture that leads this post is from our first experiments with constraint therapy. I wrapped Mia’s lefty all her waking hours that week of vacation and let her spontaneously discover more of her world with righty.
Last spring, we went through a formal “Turning Three” process of graduating from Early Intervention and so now Mia receives services through the public schools. Our town has a public preschool and while Mia doesn’t go there for school, she goes once a week for a 30 minute occupational therapy session. Since September, her regular time slot has been 8-8:30 am on Friday mornings. We all go together, Zoe, Mia, myself, and our au pair in two cars so I can go to work afterwards and the au pair can take the girls to their respective schools. Zoe and I get to have some 1-on-1 time while Mia is in her session.
Just yesterday, I spoke with the therapist about what she plans to recommend for Mia as her annual IEP (Individualized Education Program) meeting is coming up in a couple weeks. Last year, I was very nervous about the first such meeting. Mia barely qualified for services because she’s so strong functionally. So, I thought the therapist might say that she would end services at the end of this school year. She honestly said she goes back and forth about what to recommend but she thinks that she plans to recommend continuing services at a half hour per week for the next year. She and I both see benefits. Mia likes going there most of the time. Once Mia enters Kindergarten, it’ll be a new set of decisions. Even if she’s deemed eligible, I’ll have to decide if it’s more worthwhile for her to stay in her classroom or be pulled out for therapy. I expect that as she gets older, sports and other activities of her choosing will take the place of these weekly OT sessions but for now, I’m glad to hear they’ll likely continue.
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.
There is a place on the west coast of Australia called Monkey Mia. It’s famous for the dolphins that come ashore. I was there in about 1995 after a research cruise that ended in Perth. But, we never saw any dolphins.
“Monkey Mia” is a good nickname for my Mia now who seems utterly determined to master the monkey bars as soon as she can.
This evening, we went to the park. Zoe is a pro at the monkey bars, so fast that I couldn’t get any pictures of her on them. I was also trying to help spot Mia. Little did I know that Mia had moved on and no longer wanted my help.
Zoe is trying to master her next challenge with climbing trees with branches that are kind of hard to reach.
So, here’s Mia in a series of action shots. Her focus and motor planning are palpable. She makes the riskier big reach with lefty as she knows that’s safer for her and then she’s able to reach and extend her fingers to grasp with righty.
Every occupational therapist who has worked with Mia has focused on helping her extend her right arm, hand, and wrist. This shot below is an incredibly clear view of how well she has to do that to succeed in her goal of mastering the monkey bars.
And, here’s a video of Mia putting it all together on the monkey bars.
Earlier this week, Mia figured out how to get started on her bike on her own. She’s been riding it well for a few weeks but still needed a tiny push to get going. No longer. It’s almost as if each new motor skill she masters drives her to find the next challenge. In the last picture above, she’s reaching for the fifth bar. There are only two or three after that. And, she wants to go back to the park to practice so she can go all the way across. She did the monkey bars so many times this evening, dropping to the ground each time her arms gave out. She’d get up and say, “I need to try again.” I started to worry that her determination was so intense she might keep trying past the point of fatigue and injure herself. I gave my 5 minute warning and we biked home for bedtime snack.
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.
Update on September 3, 2013
Here’s Mia yesterday at 4 years 2 months old (four months after her early forays shown above) showing me that she has been practicing and can go all the way across the monkey bars. Note how confident and nonchalant she is. She just knows she can do it and she does. You might also notice that she consistently reaches first with her left arm (unaffected) and then with her right arm (affected by stroke). She does this for every one of the seven bars, reaching first with lefty, then with righty. She happens to be wearing the same lucky butterfly shirt she wore in May when I first captured her learning to swing on the monkey bars in the still and video images above.
Today is a busy day and I know I won’t have time for a longer post so I am sharing a fact sheet about pediatric stroke. I am taking a writing class on Thursday evenings – so happy to get to do something for myself!
Mia’s stroke happened sometime in the week before her MRI which was done when she was 3 days old, so it could have been in utero or during or shortly after birth. Nurses noticed her seizure activity and that led to the diagnosis of her stroke.
Early diagnosis and very proactive care and support for Mia’s development are a huge part of what has helped Mia to thrive.
Here’s a picture of Zoe from yesterday. Sometimes it’s tough to be the typically developing sister. I think that’ll be the subject of another post.
This post is part of my streak of posts in the month of May to spread awareness about pediatric stroke. If you’re able, please consider donating to support Children’s Hemiplegia and Stroke Association.
Mia goes to a preschool (that Zoe also attended for the past 3 years) where they celebrate seasons but not holidays. One of the highlights of the year is when each preschool class hosts a brunch. Each child gets to invite one special guest. They go all out to prepare decorations and food and to welcome their special guests.
Here’s Mia this morning, all ready for starting her brunch day.
I was honored to be Mia’s special guest.
Just to include a little stroke-related observation, here’s Mia eating her yogurt parfait. Note how she is using the spoon with lefty and keeping the cup from tipping over with righty in her own style. It’s challenging for her to open her right hand wide enough to hold a cup of that size so she sort of braces her thumb and other fingers to keep it from tipping over. I read a really interesting essay today on Adaptation versus Innovation by a college student who is a stroke survivor. It’s on the Children’s Hemiplegia and Stroke Association blog. Last summer when Mia would eat ice cream from a cup, she would get her right hand really messy before she had refined this strategy she is using in the picture below. I suggested that she switch hands and use righty to hold the spoon while holding the cup with lefty. That was much tidier and she has enough control to use righty to scoop ice cream and eat it. But, recently when I suggested the same strategy, she had an emphatic, “No, mommy. I don’t want to do it that way.” After reading the essay on Adaptation versus Innovation, I’m more inclined to let her continue to figure out what works for her as she’s the expert on how it feels. And, so what if we have messy clothes for a few more months or years while she sorts it out.
For historical reference, here are shots of Zoe from her brunches in May of 2010, 2011, and 2012.
This post is part of my streak of posts in the month of May to spread awareness about pediatric stroke. If you’re able, please consider donating to support Children’s Hemiplegia and Stroke Association.
