Tag Archives: righty

Triple Trapeze Stunts – Age 8

While Mia is more drawn to team sports than gymnastics, she continues to challenge herself on our backyard play structure and on similar challenges at larger playgrounds.

She’s come so far from five years ago when she first managed to skin-the-cat, as the flip over is called on this triple trapeze bar with two rings.

I love her inventiveness, how she does the movement to get her feet to flip over and then reverses it, then she starts from the midpoint, to flip back, again and again. As you watch the videos, notice how she is patient with herself, giving her right hand time to find its way into the ring, to grip, how she leads with her left hand but waits until both hands are participating to flip herself over. She uses her eyes to help make sure her right hand is where she wants it to be as her sensation in righty is reduced.

Mia had a stroke at birth and has right hemiplegia, affecting her right arm and hand.

Cutting with a Knife with Hemiplegia

  

At age 5, Mia was able to peel and cut a cucumber independently with some supervision. She has more limited use of her right hand due to a stroke at birth and resulting hemiplegia. Notice how she’s using her right thumb to hold the cucumber in place. For kids and adults with more limited use of their affected hand, cutting boards are available that hold things in place.

Today, at age 8, she used a utility knife to cut through cardboard for a school project. I don’t have a picture of that because I was supervising a bit more closely.

 

Monkey Bars at 5 and 8

Mia mastered lower monkey bars when she was turning four. Here she is traversing the high ones for the first time as an almost six year old. And, about six months after this picture, she did her improvisational routine on the parallel bars. She continues to enjoy all kinds of climbing, on play structures, rock walls, and natural environments. Hanging from bars or rings and bearing weight on both arms are both very important for developing and maintaining strength in her right hand and arm. Also, the problem solving, coordination, and tenacity to truly master these play structures is fantastic.

Here’s today’s video of her crossing the same monkey bars in an almost effortless way at age 8, almost 9, so 3 years after the picture above.

Playing Piano with Right Hemiplegia

Imagine that you are learning to play piano and your left hand and fingers seem to follow your brain’s plan with ease but your right hand and fingers do not. So it is for Mia, practicing playing piano. She uses her left hand to help position the fingers of her right hand on the keys. Messages travel fairly effectively to Thumbkin and Pointer on Righty but the other three fingers are much tougher to control. Mia was five years old at the time of this picture. More recently, she tried ukulele, but that’ll be another post.

Mia Changita

Changita means “little monkey” in Spanish. We are lucky to have Latina au pairs caring for my girls so here is “Mia Changita” doing her monkey thing!

Mia continues to amaze me, now at age six. This video is from a few weeks ago. Her inventiveness, strength, experimentation, and courage are all palpable. And, it’s really hard to tell that she had a stroke as she does most everything with both arms and hands and both legs and feet.

If you want to have some appreciation for this beyond imagining the abdominal strength needed to do this, check out my earlier post about Monkey Mia from when Mia first mastered the monkey bars at age four, or this one on neuroplasticity, or Mia learning to do skin the cat, and why Mia is an outlier as explained by Karen Pape, MD.

Tonight, Mia found the splint we used for constraint therapy when she was a toddler and until she was nearly 3 years old. She put it on even though it’s too small, and said she was going to give herself a “challenge” and give “righty” practice doing everything and that’s how she got ready for bed, using only her hand that doesn’t work quite as well as the other one for fine motor tasks. I asked her if she wants us to get a new splint that fits her better so she can do this “challenge” more often. She said yes. She asked me the name of the orthotist that we need to go see. I told her he’s Dr. Wall and he’s very funny. His name cracked her up.

My Last Daycare Check

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My last daycare check is in the mail. I reach this milestone with a mix of emotions.

In the first picture above, Zoe was visiting Mia and me in the hospital. Mia was just thirty-six hours old. It was a dozen hours before she had her first seizures which meant she had to be sent alone with medical staff by ambulance from the hospital where she was born to a bigger one across the river, with a full NICU, and the ability to diagnose her stroke.

In the second picture above, taken last week, Mia and Zoe are goofing around, far too big to be in the bike trailer, but asking me to take them for a ride for fun. Zoe is seven. Mia is nearly five.

In both pictures, their sisterhood is so present. It’s ironic to me now to see Mia sucking her left thumb and Zoe studying her right thumb. This was before, before we knew that Mia would become a lefty for sure.

It’s a leap of faith to have a child, perhaps a blind leap of faith to have a second as a single mom. I leapt twice and somehow we have all made it, not just surviving nearly five years as a family of three, but really thriving even in the face of some daunting challenges.

Last year, I actively participated in Pediatric Stroke Awareness Month, blogging daily through the month of May. That effort has had many benefits, new contacts with families and professionals interested in pediatric stroke, sharing information broadly that seems to benefit others, and most personally, helping me affirm how far Mia has come with my support. It was cathartic and healing to be able to share more details of our journey. And, we raised significant funds for Children’s Hemiplegia and Stroke Association.

This year, I considered repeating my blogging streak. I could easily have written updates on all the topics of a year ago, showing Mia as an even more competent kid, now almost five. But, I made an active choice not to blog. I am investing more this year in my own self-care. Blogging that intensively last year meant lost sleep. And, this spring, we are in a big transition. I wanted some space to feel my way through the changes.

To work full-time outside the home as a single parent requires tremendous logistical support. Zoe was in a family daycare in our neighborhood her first two-and-a-half years, but even before I was pregnant with my second child, I had visited the daycare/preschool where I would later send both girls. I loved it then and still do now. Some of the teachers have been there more than twenty years. They care for infants all the way through pre-K. Both girls started there when my maternity leave ended. Zoe was in the youngest preschool class and Mia was in the infant room. For three years, both girls went there full time. For the past two years, Mia has been in preschool there and on Monday she goes for kindergarten orientation at the bilingual school where she’ll join Zoe in the fall.

Mia has just three weeks left at this beloved school. Today, she hosted me as her special guest in her class brunch. I’ve been feeling nostalgic as the end of this era approaches. I’m putting some of that energy into making a special gift for the school and cards for the teachers.

Of course, my budget will be easier without having the expense of daycare. I look forward to seeing my bank balance when my mortgage payment exceeds my childcare expenses again. That has not been true since before I had my second child. I feel grateful to have been able to afford such excellent care, to have had the amazing continuity so that both children have had many of the same beloved teachers, and that we’ve been there long enough to feel like they are part of our family, certainly part of the village supporting me in raising these beautiful girls.

When I signed us up for two spots in this daycare, even before Mia had been born, I had no idea that she would have any special needs. And then she did, and I took a lot of time in the beginning to orient the caregivers to exactly how to handle Mia when picking her up, not to prop her in sitting but to let her lie down and find her own way there. As a toddler, she went to school wearing a splint on her unaffected left hand to give her time every day to practice with righty, modified constraint therapy. The teachers followed my suggestions for sensory play with my promise that whatever was good for Mia would be great for other children too. Mia played with shaving cream, sand, water, rice. And then, after eating snack with righty, the teachers could help her take off her splint so she could go outside to play and she could use both hands and arms to master the playground by climbing, swinging, traversing the monkey bars, and sliding.

Each year that Mia has transitioned, I have met with the new teachers to orient them to her needs. I have written up a one or two-page set of suggestions for how to best support Mia’s development. Remarkably, this year, both of Mia’s teachers have marveled at her curiosity, eagerness to participate, persistence and independence, and self-care skills that are on par or ahead of some of her peers. It’s through their eyes that I have come to see Mia as so ready to take the next step, to leap from the early childhood years into elementary school with her big sister leading the way.

And, it is nearly time for me to make that transition too, to escort Mia to kindergarten orientation, to believe that we made it, not just through the financial hurdle of getting care for two kids from birth to five while working full time, but through the developmental hurdles put in our path by Mia’s stroke.

Here are my girls in action recently, Mia on her 16″ bike, confidently making a turn, Zoe joyously swinging on the trapeze swing.

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I will close with gratitude for making it to this transition with the love and support of many. Here’s one of Mia’s recent pieces of art, where she so clearly affirms her left-handedness.

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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.

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

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

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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.

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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.

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Letter to Mia’s Teachers

Tomorrow morning at my office, I am staffing a table to spread the word about pediatric stroke and to raise money for Children’s Hemiplegia and Stroke Association as part of my Streak for Mia. Many of my coworkers have already donated and with the company match, my fundraising total is up to $2910. It’s possible with tomorrow’s donations and match that I may make it to $4000 which would be fantastic. This post is one in a series through the month of May, only 3 more days left after today! Please follow the link above to donate, if you haven’t yet. If you have, thank you!

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As we returned home after the long weekend away, I am met with the seemingly unending task of managing our schedules and logistics. The school year is winding down, vacations and camps are scheduled. I think it’s a really good thing that I have a planning mind. I actually enjoy and am good at keeping track of many moving parts. Though, I often feel like I’d like the parts to stop moving and so I can get a break.

Mia’s preschool year ends next week. She’ll transition to the next class on June 10. To prepare, I asked the director of her preschool to set up a meeting with her teachers for next year so I can orient them to Mia’s medical history and developmental needs. I’ve done this with Mia’s teachers and caregivers every year. I explain that Mia had a stroke and how it has impacted her. I have a set of notes that I update each year and then review with the teachers so they can use it for reference. It’s time to update that. Here’s this year’s version of “How to Support Mia’s Development.”

How to Support Mia’s Development

Mia is a happy and curious little girl. She seems to be quite motivated to figure out how to do everything herself including gross motor and fine motor tasks. She loves to sit and read books to herself. She also is an avid climber outside. And, she loves doing puzzles.

Let Mia do as much as she can do herself, she will let you know if she needs help.

A rich sensory environment is helpful to Mia. Suggested activities: rice table, bean bin, bubbles in table, blowing and popping bubbles, play dough, slime, beading, cutting with scissors, all kinds of arts and crafts. Mia loves most sensory activities and will spontaneously use both hands.

Weight bearing on open palms is also really important for Mia, and easy to incorporate for all kids. Suggested activities: crawling through tunnels, animal walks (bear, dog, etc.), rolling over balls, wheelbarrows, climbing up and down climbing structures, side sitting with both feet to left while weight bearing on right open palm and playing with left hand.

Encourage Mia to use both hands, routinely. Bimanual (2-handed) activities are great, self-care is excellent. She can handle most of her clothing herself. She can use a soap dispenser to squirt soap into her own right hand, pushing with her left and supinating (turning hand palm up) with her right. She can do buckles, and other kinds of fasteners will be good practice for her. Bubbles (no spill container) and big balls are great two-handed options.
Also, do thumb and finger songs with both hands – “Where’s Thumbkin?”,  “high five” with both hands or “thumbs up” for good work.

It’s helpful to Mia to have activities that she can do on a vertical surface like a wall or easel (either table-top or standing easel). This helps her reach in a way that she will extend her right wrist and her fingers and her thumb will be more available for a proper grasp. Art, puzzles, felt board, magnets can all be set up on a vertical or inclined surface.

Mia may take more time to do things with righty, or to figure things out with righty. Please help support her by making her feel that she has enough time. Offer gentle encouragement, don’t jump in too quickly to help her.
Offer verbal prompts – “Remember to use righty.” “Point with righty.” “High 5 with both hands.”

Therapy: Mia receives occupational therapy at BLOCKS once a week. It’s usually on Fridays at 8 am so Mia arrives at school a little after 9 am those days as our au pair typically drives Zoe to school first then Mia.

Nutrition: Mia can drink water from an open cup. And, I will continue to send a water bottle and smoothie so she can drink frequently throughout the day. Mia is on a gluten-free diet to support better digestion and elimination. I will continue to send her snacks in addition to her lunch. I request that you not give her any of the standard snacks or classroom baked goods that contain grains. Please offer her water or her smoothie to drink but not milk. If snack includes fresh fruit or vegetables, she is welcome to have those. If you have any questions, please check with me before offering Mia something I did not send.

Thanks,

Mara

Constraint Induced Movement Therapy

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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