Monthly Archives: August 2013

Pediatric Stroke Clinic – 4 Years Old

Two Thursdays ago, I took the morning off from work to take Mia to the pediatric stroke clinic. It was our fourth visit to the stroke clinic. We went when she was two months old, fourteen months old, two years old, and here we were again at four years old.


Two years ago, when she was two years old, I agreed that she could be part of the International Pediatric Stroke Study. That means visits every two years until she turns ten.

Mia dozed in the car on the drive into Boston. As we descended into the parking garage, going around and around and down, she awoke and told me, “Park over there, Mommy.” She pointed to the left and the signs were telling me to go right. When I parked, she got upset, not quite understanding my explanation about why I couldn’t park where she wanted me to park. She recovered after a few minutes and noticed the numbers on the wall in front of us. Pointing, she said, “That one has two ‘5’s. And, that one has one ‘5’ and that one over there has one ‘5’ too. That one has a ‘6’ like Zoe. And, that one has a ‘4’ like me!” The numbers were 504, 505, 506. Zoe is six years old. Mia is four. Just a few months ago, Mia’s preschool teacher told me that Mia was not yet recognizing numbers.

As we walked through the garage to the elevator, she told me, “When I was a baby and toddler and you took me to the doctor, you used a stroller.” I said, “That’s right.” She continued, “Now I’m big and don’t need a stroller.” We haven’t used a stroller for more than a year. I find it fascinating to see what she remembers. I find it interesting to see what I remember. Summer visits to the hospital complex where she was in the NICU are tinged with post traumatic stress for me. The heat and humidity take me back to my early days finding my way around.

The stroke clinic is in the outpatient building on the eighth floor. We were on the sixth floor for Mia’s appointment with her neurologist just a month ago.

We stopped in the café on the ground floor for some snacks and to use up some of the time we had to wait. On the elevator, Mia asked me to show her the ‘8’ so she could push the button to get us up to the eighth floor.

The stroke clinic is run out of an office shared by hematology and oncology doctors. The toys are nicer. The atmosphere is quieter than the sixth floor wing shared by neurology and gastroenterology doctors. There seem to be more signs warning to wear masks if you are coughing. I started thinking of cancer patients with compromised immune systems. We walked past the resource center for cancer. Prayer flags, decorated to honor patients are strung along the sunlit hallway.

As we checked in, the administrator took special care to make Mia a patient wristband with stickers on it. Mia chose rainbows, one for the wristband and one for the back of her hand.

A huge bin of giant coloring books was on the floor with an inviting sign urging kids to take one. Mia chose a Noah’s Ark coloring book. She got busy playing with the toys and then spent some time looking at the fish in the giant tank.

We went back to use the bathroom and Mia was a little confused because it wasn’t in the same location as the one from a month ago. I reminded her that we’re on the eighth floor now, not the sixth.

The nurse weighed Mia, measured her height, took her blood pressure.


We returned to the waiting area and Mia asked to use the iPad. She continued to play on it after we were taken back to our exam room.

They all came in together, two neurologists, a hematologist and four young women observers, at least thirty minutes after our scheduled appointment. One of them commented about the iPad, “It’s kind of distracting.” I managed to persuade Mia to turn it off. She did so spontaneously with her right index finger. Mia became alternately goofy and shy, leaning onto me and burying her head in my chest. She wouldn’t talk much. She did eventually finish eating her yogurt and used her right hand to bring the spoon to her mouth when they asked her to do that. She was eager to show them videos on my phone of herself riding her bike, swinging from the monkey bars, doing skin-the-cat. I answered their questions and tried to direct their attention to things I notice. I told them about the conversations while parking, about 504, 505, 506. One of the neurologists said, “It must take a long time to get out of the car.” I asked if they are familiar with Dr. Karen Pape and her work. I told them about her recent recognition of Mia as an outlier. I found the video of Mia doing skin-the-cat. They seemed rushed. Mia was eager to get to the part where they ask her to run up and down the hallway. She also got to hop on one leg down the hallway. All eight adults watched as she dashed back and forth.

Back in the room, one of the neurologists said, “Even though she’s doing great, we think you should go back for a neuropsych exam next year when she’s five, before kindergarten.” I said, “We went when she was three and the neuropsychologist wants to see her when she is six, before first grade.” They conceded, “Oh, she’s the expert.” Meanwhile, Mia grabbed both of my hands, and climbed up my front to flip over. One of the doctors got a tear in his eye as he remembered his younger daughter doing the same.

They asked us to come back in two years after the neuropsych exam and they mentioned that the administrator could help coordinate the scheduling. That’s another difference from the regular neurology office. There, I have to remember when to schedule the appointments. Back in the lobby, the friendly administrator asked for the plan and wrote some notes to contact me in March of 2015 to schedule the neuropsych appointment that June so the stroke clinic appointment can be in August after the report is available from the neuropsychologist.

While it’s a huge relief to not have to go back for two years, I find myself frustrated with the kind of disconnect that we experienced. It’s so stark in contrast to the validation from Karen Pape. It’s stark in contrast to the Feldenkrais lesson Mia received this morning. I understand that the standard time slots allotted even for clinic appointments don’t allow time for real observation or connection. But, it saddens me that their questions didn’t go deeper, that they didn’t take more of an interest in a kid doing as well as Mia. I left them with the address of this blog, unsure if anyone will take the time to learn more about our struggles and triumphs.

This morning, we went to see Matty Wilkinson and Jennifer Lee for a Feldenkrais lesson. Jennifer was visiting from California and mentoring Matty. Their approach was so gentle, and even when Mia resisted Jennifer’s touch at times, we three adults danced together in a way that gave Mia support for a full forty-five minutes to sense and feel herself in movement.

Reflections on Outliers Post by Dr. Karen Pape

This bench is in the Ithaca Children’s Garden which we visited last weekend. The image seems fitting here. Just as my girls are attempting to match their hands to hands in the bench, parents of all sorts are doing their best by their kids.


Karen Pape, a remarkable physician focused on helping children with early neurological injury reach their fullest potential, recently wrote a post about Mia as an outlier, an outlier in the best possible sense as she’s doing more than expected. I feel deeply honored to be recognized by Karen Pape in this way. How can we get more children on track to reach their full potential?

I want to share the link here so others who may learn something or draw inspiration can find it if they happen to find their way here first. And, I also have some thoughts to share as the mom of Mia and Zoe. Parenting young children is relentlessly hard work. Parenting a child with special needs, specifically Mia who had a perinatal stroke, is a series of decisions, a lot of worry, educated guesses, trial-and-error, and a whole lot of wondering if those choices are right or wrong, too much or too little. In the early days, weeks, and months, darker worries and fears were more prominent for me.

Each of Mia’s birthdays has been another opportunity to see how much she has accomplished with support from me, Zoe, and many others whose help we have enlisted. Mia’s own accomplishments and her pride in tackling and mastering new challenges continues to be the greatest affirmation that some of those choices have served her well. My experience in a four-year Feldenkrais Method professional training prior to having children was the best possible education I could have had to parent Mia in recovering from her stroke. It taught me how to observe, to sense and feel, to give Mia the space and time to discover for herself how to do things. And, from the beginning, when Mia was first diagnosed, I understood that Feldenkrais lessons could be a key component in her development.

In starting this blog in May to support Pediatric Stroke Awareness Month, I have discovered my voice as an advocate and educator. That was not my intention, another welcome surprise on this parenting journey. I’m hearing from parents around the world that Mia’s story has inspired them. Some are even asking for specific suggestions about their children’s developmental needs.

I’m certain that there will be many more parenting decisions that challenge me with both of my girls. And, I’m sure that I will make many more mistakes. But, I no longer wonder if my overall approach to meeting Mia’s early developmental needs is appropriate. Mia has confirmed that over and over. Zoe continues to lead the way in modeling things that Mia can do. And, this recent validation from Karen Pape has motivated me to continue to share more details about how I have supported Mia’s development in this critical period of early childhood when brains are most plastic. Specifically, I have two more case study posts in mind using words, video, and still images. One will show Mia’s early locomotion from rolling and reaching to commando crawling to crawling on hands and knees and walking. The other will show Mia’s process in learning to ride a bicycle, starting with a balance bike and progressing to a two-wheeler, skipping training wheels.