How Community Matters – 2018 CHASA Family Retreat

When my second daughter was two days old, she had seizures. The seizures were a blessing as they alerted us that something was happening inside her brain. She was transferred to Massachusetts General Hospital, where doctors performed a slew of tests while I remained at Mount Auburn Hospital, just two days post Cesarean birth. By phone, I gave permission for them to run blood work and brain scans. And, by phone, I received a diagnosis, “Your baby had a stroke, left MCA infarct, no midline shift.”

Mia is now nine years old, and thriving in every possible way. In the early days, I shared posts via a private blog to update family and friends and that sustained me while Mia was in the NICU and I was commuting from home where Zoe, my then 2.5 year old was also needing my attention as she wondered, “Where is my baby sister? Why isn’t she home?” Coworkers offered me rides and meals, and even childcare for Zoe in those early days. Friends and family from further away sent moral support.

I was working as a software engineer but had completed a Feldenkrais Method® professional training program prior to having children. In addition to starting Early Intervention services when Mia was one month old, she was in the hands of Sheryl Field, founder of The Field Center for Integrative Development from early days as I knew from my own experience that Feldenkrais would be essential to my daughter’s development.

I may have heard of Children’s Hemiplegia and Stroke Association (CHASA) during Mia’s first year, but was reluctant to join. Based on my Feldenkrais training, I was focused on the best possible outcome for Mia, and didn’t understand the value of community. I only began to engage with the CHASA community as Mia approached twelve months. Her Early Intervention physical therapist recommended a hand brace for her affected right hand. From a Feldenkrais point-of-view, I was opposed to a hand brace. The brace would pull Mia’s thumb out but her muscles would contract more tightly against the brace and worsen her chronically tight and tucked thumb. I found CHASA, and learned about constraint therapy from another mother who turned out to live in a neighboring state, and shared her knowledge generously, including referrals to an orthotist, a physiatrist, and an occupational therapist specializing in constraint therapy. This mother and her daughter visited us, and handed-down many high-quality toys that promoted bimanual use and functional use of an affected hand and arm. It was an amazing gift to make this connection first online, then later in person, to learn from a parent of an older child who was further along the journey.

At that time, the CHASA community existed in a basic website and via a HemiKids listserv. I lurked, occasionally gleaning ideas about new toys, therapies, and possible struggles. After a few years, CHASA Facebook groups were added, and the community had many faces as families started to share photos and videos. In 2013, when Mia was four years old, I created this blog and wrote posts throughout the month of May to raise awareness about pediatric stroke. Through my writing, I connected with more families but it was still online, aside from that one mom from Maine.

I knew that CHASA had family retreats, but when my children were young, the idea of traveling to a family retreat in a southern state in July didn’t seem feasible or appealing to me as a single mother. But, then the 2016 retreat site was announced. Lexington, Kentucky was close enough that we could drive. My kids were seven and nine years old, old enough to make the trip meaningful for them, and enjoyable for me. And it was in ways that I couldn’t have anticipated. My girls met other children from families impacted by hemiplegia or stroke. We all made friends, shared meals, swapped stories, and connected with about four hundred other people from families that had walked some part of our journey. We received and offered support and encouragement.

Now, these CHASA family retreats are every two years. We were lucky that the 2018 retreat was planned for Denton, Texas, near where one of my brothers lives, so we again planned to attend, and combined the retreat with a family visit in Texas. We saw old friends and met new families, including a neuroscientist mom who now works at the U.S. Patent Office, families from all over the U.S. and even one that currently lives in Moscow, Russia. We met kids and young adults who have hemiplegia due to many different causes: stroke, brain tumor and surgery, hemispherectomy for intractible epilepsy, twin-to-twin transfusion with in-the-womb surgery.

We took over a bowling alley as CHASA sponsored more than 100 kids in bowling, a fun activity that is possible with use of one hand, and doesn’t require a ton of walking. We swam with, played cards with, and danced with other families just like ours. We interacted with several service dogs. We heard a talk by and watched a demo of adaptive table tennis with paralympic hopeful, Danny Scrivano, taking on members of the North Texas University Table Tennis Team. We sat in a circle with tens of daughters and their moms talking authentically about aspects of growing up with hemiplegia, how to manage self-care with one hand, or limited use of a helper hand, how to deal socially with the real risk of seizures, how to advocate for independence within one’s family and in the wider world. We saw a demo of a glove that with gaming technology can improve one’s functional use of an affected hand. I participated in discussion groups on alternative therapies and alternatives to therapy. With 370 others whose lives and families have been changed by hemiplegia or stroke, we connected, learned, and dined together for seventy-two hours.

And, perhaps most meaningfully to me, I was truly able to give back at this retreat. I taught a Feldenkrais lesson on turning and twisting. It was done in chairs and in standing. I invited people of all abilities, ages ten and up. Several kids and young adults with hemiplegia participated and noticed differences throughout the lesson and from side to side. Parents joined in too and felt how this way of attending to oneself can be of benefit. I shared a recording of the lesson with those in attendance at the retreat who were not up early enough for my 8 am class, and will gladly share with you if you contact me. Beyond this lesson, I taught a family with a child who is not yet crawling that it doesn’t serve their son to put him in sitting or standing before he’s ready. He’ll own his movement and move with higher quality if they can respect his developmental pace.

We left the retreat hotel on Wednesday, grateful for all the new connections and sad to say goodbye for now. For the adults and teens, online connections will only be strengthened by this time spent in face-to-face contact. For the kids, they’ve made memories to last until the next national retreat or more local gathering.

The Child Neurology Foundation has recently formed a Collaborative Peer Support Work Group to improve opportunities and access for peer support. As my family has personally benefitted from direct peer support, I heartily endorse these efforts and hope to attend their Peer Support Boot Camp on October 2, 2018.

A True Outlier: Mia Skins the Cat

Dr. Karen Pape wrote the following post on her site in August 2013. Sadly, Dr. Pape died on June 2, 2018. As a tribute to her, I’m reposting it here. Below her post, I share a comment about falling that I wrote in response to her original post. Shortly after Dr. Pape wrote this, I shared my  Reflections on Outliers Post by Dr. Karen Pape which in many ways was the seed for the career transformation that I have undertaken this year.  

In a previous post, I asked people to write me about Outliers…children who were doing more than expected after an early brain or nerve injury. This is Mia, demonstrating a new skill on her 4th birthday.

When you watch her “Skinning the Cat”, it is hard to believe that she had a stroke in the early days of life. The damage was to the left side of her brain, causing a right hemiplegia. Yet holding on to the rings, both hands and arms are working equally hard. Both legs swing up and over. There is no evidence of the hemiplegia. This result is not magic – it is the result of a determined child who has adopted the “I can do it” philosophy taught to her by an equally determined mother. I think both of them qualify as Outliers!

This is the link to the full story of how Mia first learned to swing, then to lift her legs up and finally over the top. http://marazoemia.net/2013/07/11/case-study-skin-the-cat/

Her mother’s description, still shots and videos, take you step-by-step through Mia’s learning process. First and foremost, Mia expects to be able to accomplish this task and she works hard, through many failures, until she reaches her goal. She is encouraged by her mother and also has the added role model of her older sister. If Zoe can do it, then I can do it! I am quite sure that during the learning process, Mia has taken some falls. She probably had a few bruises as well. Learning a new skill is a series of failures, trying new methodologies and finally success. Mia has the advantage of watching her older sister work through the same sequence of learning and she is up to the challenge.

How many children with an early brain or nerve problem are allowed to fall? When I was in clinical practice, I always checked young children for bruises on the legs. It is a normal finding in growing, exploring children. The absence of bruises often means there is an excess of watchful helpfulness. The cognitive neuroscience experts…and master coaches…understand the simple reality that learning is an experiential process. No able-bodied child has ever learned to walk without a lot of falls. Brain neuroplasticity is activated by a novel challenge. In the absence of challenge, the child’s normal habits dominate. In the past, many therapists had tried to get Mia to extend her arm and grasp. She learned how to do it when she had to…new habits are formed by novel, challenging tasks that have consequences. Read the whole post about Mia’s learning process. Her mother and sister offer some guidance and ensure her safety, but the process of trial and error…by Mia…is the way her brain learns the task.

At the end of the video, Mia says, “I flipped”. Her pride in herself is a precious gift and I am grateful to Mia’s Mom for sharing her story. We need more of them.

August 7, 2013 
Mara commented:

It’s such an honor to have Mia featured here along with Zoe and me. Thank you.

And, you guessed right, she definitely has fallen over and over. She falls all the time and happily proclaims before I can say anything, “I’m okay Mommy!” Then, she hops up and continues doing whatever has captured her attention. And manipulating band-aids for all those little boo-boos is excellent fine-motor practice for both hands, fundamentally a bimanual task.

Just yesterday, we were at a play structure and Mia was playing on a triple trapeze swing, similar to the one in the video above. Just six weeks after first doing skin-the-cat, she continues to take new risks. She can hook her legs with knees bent over the bar and hang head down. She was so bold as to let go with her hands and hang there for a few seconds seeking a thrill. And then, just as I was starting to panic wondering if she’d be able to find her grasp again on the rings she did and she flipped off the bar and had the biggest smile.

It take some training as the parent to stand by and witness this kind of courage and determination, but the rewards are tremendous and often surprising.

Sisters Pogo Sticking

This morning, I mentioned to my girls that a year ago I had posted about their pogo sticking feats. Zoe reminded me that she led the way and inspired Mia to want to learn this new skill. When I commented that Zoe hasn’t been pogo sticking lately, she said that she has outgrown the one pogo stick we have so it’s time to upgrade.

Here’s Zoe in action with Head-and-Shoulders thrown in for fun in March 2017 at age 10.

Zoe’s tricks on the pogo stick motivated Mia to master her own tricks. A year prior to this, Mia had a hard time making the pogo stick go down.  Here is Mia “one handed” with her tongue out to help focus! Variety is one ingredient in healthy movement development so part of what I am sharing this month are many of the different activities Mia tries. Pogo sticking requires balance, timing, and comfort with falling. Here’s Mia in 2017 at age 7.

And, here is Mia this year in 2018 at 8 years old.

Library Brick – A Permanent Marker of Reading Streak

This picture is from the grand opening celebration of the Christa McAuliffe Branch Library in May 2016. An artist drew these fun henna tattoos on the girls’ hands. I bought this brick nearly a year prior to support the library construction. At the time of the brick installation, we were at 1327 consecutive days of our reading streak. Now, we are a month beyond 2000 Days of Reading Aloud.

These days, I spend a lot of time at the Christa McAuliffe Branch Library. It has great light, tons of windows, and plenty of quiet working space. Each time I enter, I find our brick.

While I’ve read to both girls since birth, Zoe initiated the reading streak, and we have promised to keep it going as long as we can. Mia’s interest and endurance come and go, sometimes it’s “too many words” and other times she joins us. Both girls are capable readers and still love being read to at least once and sometimes twice each day. Sometimes we have two read-aloud books going at the same time, one of each girl’s choice. Car rides got easier once both girls were interested in the same books. This beats the couple of years when our long drives alternated between an hour of quiet (Mia’s frequent choice) and an hour of listening (Zoe’s preference), and all the associated negotiations about who gets to go first and when it’s time to transition, especially if we were mid-chapter.

About ten days ago, in anticipation of the release of The Penderwicks at Last, the fifth and final book in the series by Jeanne Birdsall, Zoe was rereading Harry Potter, and she told me that she planned to finish reading the sixth and seventh Harry Potter books then reread all four Penderwicks books so she’d be ready for the fifth book. She did it. The newest Penderwicks book arrived yesterday and she read it straight through. Some school and household tasks get put off when she’s in a reading burst like this; it’s hard even to convince her to stop to eat or move her body.

Remembering Nightly Conversations with Grandma Barb

I wrote the post below when Mia was eight months old and Zoe was newly 3 years old. I was thinking about my mother yesterday, on Mother’s Day, how complicated relationships between mothers and daughters can be, how messy ours was. I was thinking about my own girls, about the imperfect parenting I’m doing. I was thinking about how all mothers do the best they can with the resources they have. And, now eight years after I first wrote this, I’m sharing it again here, even more grateful that I made the effort to repair my relationship with my mother in the limited time she had as a grandmother to my children, as a mother to me as a mother.

November 2007, Grandma Barb holding Zoe (10 months old).

August 2009, Grandma Barb holding Mia (2 months old).

August 2009, Grandma Barb reading “The Little Red Hen” to Zoe (2.5 years old).

March 14, 2010

A month ago, I drove to Ithaca for my last visit to see my mother. Two days before that was our last of many hundreds of nearly nightly phone conversations over the past three years.

I didn’t always talk with her daily. There were many years where I understood that her expectation was that I’d call each week and I dutifully did so, sometimes with stressful anticipation for many days worrying about what zinger of a remark she might make, what questions she might ask that I’d need to artfully avoid, and of course what small parts of my life I felt comfortable and safe to share with her.

But, something shifted when I became a mother myself. My mother’s last visit to the Boston area was for a baby shower when I was 7 months pregnant with Zoe. My sister Amy brought our mother and they stayed at Nan’s house where together my sisters threw me a beautiful baby shower. My mother enjoyed the trip, delighting in being part of the celebration of another grandbaby-to-be, reconnecting with friends of mine from high school, college, and meeting some more recent ones for the first time.

Her ability to travel was limited. Her health was fragile even then. And, her days were pretty monotonous. She spent a lot of time watching TV. She managed to get out to the pool 3-4 times a week for some water exercise. She had home health aides to help her get to her appointments and manage her own selfcare. She saw my 2 siblings who live in Ithaca frequently, and the rest of us less often.

So, I started to call, daily. In the early days when I was on maternity leave and spending great amounts of time sitting around nursing Zoe, it was fairly easy to call, and it helped the time pass. My mother enjoyed hearing about every little milestone, hearing Zoe’s coos through the phone, and I suppose remembering her own days nursing each of her 6 babies as newborns. Then, there were the few months that I started working part time while my house was also being renovated. She was interested in everything, Zoe’s adjustment to daycare, my return to work, progress on the house. We visited Ithaca every 2-3 months during Zoe’s first year so my mother often would say that she couldn’t wait to see Zoe doing this or that, whatever I had told her she was doing now. I also sent pictures every month. And, when I visited, she had albums ready waiting for me to fill with these pictures of Zoe. I have all those albums now. In fact, they’re the only photo albums I have of either of my kids. All my pictures are in digital albums and any prints are in a big box. There are several more months worth of prints that are in the basket where my mom collected them. I suppose they’re waiting for me to continue the tradition, to find an album and fill it. I might just need to make time for that.

As Zoe started to eat solid food, I adapted our phone conversations. I turned on speaker phone so I had both hands free to manage the feeding process. My mother wanted to know each night what Zoe was tasting now. “Is it all over her face?” “Does she like it?” “Did she make a face?”

Sometimes these conversations were as brief as 5 minutes, other times they were longer. It really depended on what was going on with us, how much attention Zoe needed, what else I needed to get done.

As Zoe started to talk, she could say things directly to Grandma Barb. At some point, they began a nightly tradition of “Night, night, don’t let the bedbugs bite!” Only, my mother didn’t like bedbugs, so she asked Zoe to start a variation on the game. So, bedbugs were replaced by monkeys, kangaroos, koalas, and tens of other silly things that do and don’t really bite.

At times, mostly when Zoe was two, she didn’t want to call Grandma Barb, so I struggled to keep it interesting for her. Sometimes, we read stories together over the phone to Grandma Barb. Sometimes, Zoe’d be contentedly playing and I’d get to have an adult conversation with my mother, usually brief, often interrupted, but still a useful break from an evening of chatter with my extremely verbal toddler then preschooler.

These conversations went on through my whole second pregnancy. I didn’t know if I was having a boy or a girl. My mother wanted to know. She was impatient to find out. She was very excited that I had a second girl. And, then she was as worried as anyone when Mia’s early health complications arose.

At first, I was too overwhelmed to call her. Eventually, I did. She was frustrated and felt left out because a lot of the fast, real time communication in the days immediately before and after Mia’s birth went via text messages and e-mail, media she was not able to manage herself. My brother Andrew printed hard copies of these sagebaby posts and brought them to her. I have her stack of them, in the folder with flowers on it, where she kept them. She read them so carefully, and followed up with questions when we talked. At one point, she corrected me about Mia’s weight. She was sure that I had gotten it wrong in a post. In fact, she was right, I had made a typo off by a pound, and I went back and fixed it after she told me. Unbelievable.

She tried to keep track of every early appointment that Mia and I had. It was a lot to remember and so she’d ask me over and over again for the details and the sequence. She’d follow up to learn what had happened. She was remarkably understanding when I was unable to plan to visit until late August when Mia was almost 2 months old. On that visit, she enjoyed Mia so much. Mostly, I’d put Mia in a spot where my mom could watch her – in her carseat with a toy dangling for Mia to bat at with her hands, or on the baby gym mat where Mia looked at her toys and started to hit them. And, she held Mia too as much as she could. Even in August, it was tricky for me. I had to make sure my mother was in a chair with enough support that I thought Mia would be safe.

In September, my mother was hospitalized with pneumonia for 5 days. She was released with round-the-clock care at home and lived most of her last 5 months in one room. And still we called. I took Mia to Ithaca to visit right away, left Zoe for 2 nights with a friend from work. We all visited her in Ithaca again for Thanksgiving. And then, one last trip – Valentine’s Day. All together my mom saw Mia on 4 trips we made to Ithaca in her first 8 months. Mia had started to “talk” in our phone conversations, jabbering loudly enough that my mom would talk back to her.

In the weeks before her final illness, my mother said so many times that she wished she could come help us. She knew I was stressed juggling my two girls and work and the household maintenance. She tried to suggest things that might help. She was eager for us to visit again, though she knew that we were not ready to travel because of illness, weather, and my work. She said that she couldn’t wait for spring so I could bring my girls to visit again.

Spring is coming soon, perhaps jump-started today by the clocks springing ahead and the rain falling all day long.

We can’t visit her now. All we can do is remember and find small meaningful ways to keep her spirit alive for these girls who only barely knew her. I can continue the photo album tradition. I can wish Zoe “Night, night, don’t let the *** bite.” Lately, Zoe’s been wanting me to say “bedbugs!” Funny. I can go shopping for a baby doll for Mia. I had told my mom that Mia recently started to play with Zoe’s two baby dolls. My mom wanted me to get one (from her) for Mia that’s exactly like the one she gave Zoe at Thanksgiving 2008. I was busy. I didn’t go right out to get it even though she kept asking me about it. Soon, I will.

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.

Yard Work is Great Therapy

Both of my girls have long loved digging in the dirt each spring. Here they are at 4 and nearly 2 years old.

And, in the next picture, you can see how Mia is bearing weight on her right hand while digging with lefty in our backyard sandbox.

We also would play “wheelbarrow” where I’d hold her feet and she’d walk on her hands (not many pictures of that as I was usually the one holding her feet). This was great for weightbearing on both hands and for balance. Mia had a stroke at birth which largely affected her right hand and arm.

This afternoon, we set out to solve a puppy predicament. This morning, too early, our doorbell rang. I was asleep as the fifteen month old dog still wakes me up too early most days so I had fallen back asleep. The girls were up though and had let him out in the fenced back yard. Well, those holes he’s been digging finally panned out for him. He escaped into the neighbors fenced-in back yard, and was brought back to our front door by our lovely neighbor.

After researching a bit, and filling in the holes along the fence as best we could with bricks, dirt, and rocks, we decided to create a digging pit for Toby in a place where he already likes to dig. So, we dug a hole, and then used the wheelbarrow to transfer some sand from the sandbox that my kids have outgrown to the pit, layering sand and dirt, to make it a digging spot. Now, Mia can fill and push a wheelbarrow on her own, and it’s great for helping her use her whole self to coordinate balancing the wheelbarrow. She holds the metal rake the same way she holds a hockey stick when she’s skating out, and opposite from how she holds a lacrosse stick (for that she has her right hand near the end and her left hand near the head of the stick).

Zoe joined in the action for the training part. The girls buried Toby’s toys in the new pit and encouraged him to “find it.” Time will tell how effective this solution is for Toby. Meanwhile, he’s only allowed in the back yard with supervision. I’m pretty sure he’ll try to escape again.

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.