Category Archives: Pediatric Stroke Awareness Month 2013

Occupational Therapy – What’s it mean for infants, toddlers, and kids?

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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.

Monkey Mia

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.

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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.

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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.

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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.

Pediatric Stroke Facts

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.

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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.

Preschool Brunch Tradition

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.

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I was honored to be Mia’s special guest.

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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.

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For historical reference, here are shots of Zoe from her brunches in May of 2010, 2011, and 2012.

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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.

Streak for Mia

I sort of launched into the middle of this blog as if it was obvious why I am starting a blog now. There’s a bit about that on the “About” page. I’ll write more soon.

For the month of May, the blog is a place to capture my streak of writing and sharing about pediatric stroke to spread awareness and to raise money for Children’s Hemiplegia and Stroke Association, chasa.org.

Please visit my fundraising page for more information about my streak and for an easy way to support an organization that has helped our family.

Mia, Ellie, and the Lacing Animals

On Sunday, Mia (almost 4) and her friend Ellie (almost 5) were playing while Zoe and Ellie’s big brother were in Hebrew School. I carry around a bag of toys for such occasions that includes crayons and coloring books and also developmental toys that require two hands, like the lacing animals featured in this video clip below.

Notice that both girls, Ellie (left) and Mia (right) are initially working on lacing. Ellie switches hands repeatedly, handing the lace from one hand to the other. Mia is holding her string in her left hand. She’s left handed. Mia’s stroke was in the left side of her brain, impacting the right side of her body. She started to show left-hand dominance when reaching for toys as an infant. Typically, handedness does not develop until much later.

Mia then gets interested in her buckle on her shoe. It’s the first day she is wearing these sandals, discovered in the switchover to warm-weather clothes. She continues to hold her animal in her right hand while she tries to manipulate the buckle with her left hand only. When Ellie shows the long string, Mia spontaneously points with her right hand and arm. And, after that, she does bring her right hand to help manipulate the buckle.

This is just a tiny vignette of one minute from one of Mia’s days but I notice stuff like this all the time. I think of it as a sort of constant state of awareness about how much Mia is spontaneously bringing her whole self into action for any given task. I try to create conditions that invite her to do this as often as possible without it being part of her conscious awareness. Fundamentally two-handed toys help. Bike riding definitely helps. And, tricky aspects of clothing and shoes like zippers, snaps, buttons, and buckles really are easier to make work if you can bring two hands to the task.

We went to the playground this evening and Mia proudly showed me her new skills on the monkey bars. She can reach one hand to the first bar and the other hand the second bar. With some help she can reach repeatedly. She has callouses on her hands from practicing at preschool. This too is a highly motivating two-handed activity that I fully expect her to master in time.

May is pediatric stroke awareness month and I am sharing tidbits learned while parenting Mia, who had a stroke around the time of her birth, almost 4 years ago.

Three Years of Walking to School

In the fall of 2009, when Mia was 3 months old, both girls started together at the same preschool/daycare. It’s a mile from our house and I committed to walk them there as many days as weather and schedules allowed. We walked 253 times over those three years. This slideshow captures a sampling of our walks.

If you view it while thinking about Mia’s development, there’s a lot to see. She learns to reach, point and eat with righty, she wears her constraint splint (first hot pink later green on lefty), she learns to sit, walk, ride a balance bike. You can also see the developing relationship between the girls. And, I treated this as hardiness training so we walked in all seasons, with appropriate gear, and as a result my girls are quite comfortable and capable to be outside all year long. Mia’s determination is a huge asset as she has worked hard to gain skills and functioning. Zoe is a fantastic motivator to Mia as she wants to keep up and do everything that she sees Zoe doing.

May is pediatric stroke awareness month and I am sharing tidbits learned while parenting Mia, who had a stroke around the time of her birth, almost 4 years ago.

Feldenkrais Lesson – “I’m running!”

Mia had a Feldenkrais lesson with Matty Wilkinson this morning. Note how happy and playful the lesson is. Play promotes learning.

The Feldenkrais method has been the most effective of all approaches we’ve used to support Mia’s development. Mia has had lessons with several practitioners since she was an infant.

May is pediatric stroke awareness month. Mia had a stroke around the time of her birth. I’m attempting to post daily throughout the month to share tidbits I’ve learned from parenting a stroke survivor.