Tag Archives: occupational therapy

Pediatric Stroke Clinic – 6 Years Old

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Today was our fifth visit to the Pediatric Stroke Clinic at MGH. The first was when Mia was 2 months old, then 14 months, 26 months, 4 years and 2 months, and today at 6 years and 2 months. Every one of these appointments has been in mid August. The stroke clinic happens once a month, and we’re on an August schedule, at first once a year until Mia turned two, now once every two years. It’s a form of time travel for me, revisiting this place, with an older and more capable child each time, answering the same questions and some new ones, sharing information, seeing if I’ll learn anything useful.

The heat, the drive, the traffic, parking garage, finding the bathroom, remembering doing it all with a stroller, getting a snack at the cafeteria, finding the right elevator to the eighth floor, waiting, the really friendly staff in the waiting area as the stroke clinic shares space with the pediatric oncology team. They seem friendlier and more gentle with families than the other floor with pediatric neurology and gastroenterology. The toys in the waiting area are nicer. There are many books and a beautiful huge fish tank.

Today, there was a new neurologist on the team and she was great! She is an M.D./Ph.D. from Buenos Aires, spoke Spanish with Mia, and is eager to learn from me as they work to set up resources for families. Mia’s main pediatrician is a woman, and all of her therapists have been women, but this is only the second specialist we have seen who is a woman. She took time to get to know us, was patient when Mia wouldn’t answer her questions, gave her time to warm up, and asked really good questions. She asked me what kind of support system I have. She asked me to share resources with her as they are setting up a website to support families. She offered to write letters to support me in advocating for Mia to continue to receive occupational therapy through the school district and to get speech therapy too.

I found a sweet video of Mia at that first appointment six years ago. She was swatting at the toy horse hanging from her carseat, snapped into her stroller frame. Then and now, I watch this video clip and see that she is hitting the horse a bit more purposefully with her left hand than her right. It’s subtle but noticeable. And yet, her right hand is active too. I used to wonder what it meant, what would she be able to do with her hands.

Today, Mia read aloud for the new neurologist on the team. She ran down the hall, with no apparent gait issues. She hopped as easily on her right leg as her left. She turned pages in a book, took off her sandals, all using two hands in a very functional way. She can tie her shoes, paddle a kayak, climb trees and rock walls, swing across monkey bars, ride a bike, swim, waterski, play soccer, ice hockey, lacrosse, and piano. She is amazing and our journey has been rich with rewards and challenges.

I know a family new to this world of pediatric stroke. I know several such families in the online community of CHASA (Children’s Hemiplegia and Stroke Association). It’s a scary, bewildering journey. Love your child as if they are fine. Educate yourselves to advocate for the best care possible.

I have felt sick this week. It started as a bit of congestion Monday evening and then turned into intense fatigue Tuesday afternoon, worsened overnight as Mia needed some nighttime parenting. I did get good sleep Wednesday, night but still felt tired in my bones this morning. I felt sick again this afternoon from the heat and sun during the drive as I didn’t take the time to put on my sunglasses. I have been doing some amazing healing work with Irene Lyon to support my nervous system in healing from stress and traumas small and large, recent and distant. I sensed that my fatigue this week is a release of long held stress. And, then today, as I was trolling through my memories brought on by the heat and places on our route into Boston and through the MGH campus, I was moved to write here to process all of this, and it made sense all of a sudden. I am releasing some of that stored tension, the wonder and worry that started when I learned my two day old baby had suffered a stroke.

I felt it all today, the fear and uncertainty that made me anxious through the early days, weeks, months, and years, intense pride and connection with Mia as she showed off her many skills, compassion for my imperfect parenting of both of my children through a tough several years, and joy to have them both on this journey with me.

Since I had to take the afternoon off from work for the trip into Boston, after we finished with the appointment, Mia asked me to take her to get new sneakers before school starts next week. We found shoes she loves, blue boys’ ones, no laces please. And, I agreed because last year in Kindergarten, she learned to tie her shoes in September and had to practice all year with her lace sneakers that are now two sizes too small.

We met Zoe at home after her afternoon playdate and took her to soccer practice. Mostly now, life goes on like this with our full schedules of work and camp, soon shifting to work and school. We get help from our au pair to fit in all the activities, transportation, meal prep, and care needed to support the development of both of my girls. And, occasionally, I make time to pause, write, and share how much I appreciate the wonder of it all.

Case Study: Ponytails and Folding Socks

Zoe is a great inspiration to Mia. Just this morning, Zoe put her hair in pigtails, and before I knew it, Mia had too. Zoe is seven. Mia will be four years and nine months old tomorrow. Zoe wasn’t even aware of the idea of doing her own ponytail or pigtails until she was in kindergarten last year and saw a classmate doing it. Mia has the good fortune of watching Zoe do everything day after day so she gets the idea that she can too.

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I don’t always see it coming with these new challenges that Mia defines for herself. A couple of weeks ago at bedtime, I noticed that Mia was brushing her hair a ton with leave-in-conditioner and getting frustrated with the tangles. I thought her frustration was related to hairbrushing. It wasn’t until the next morning, when I was sitting on the couch reading to them and Mia was attempting a ponytail and getting frustrated and then going into the extensive brushing routine again that I realized her quest to give herself a ponytail.

Mia is very dominantly left handed and she can do a lot with her right hand, especially in bimanual (two-handed) activities, but learning a new skill behind her head seemed pretty daunting to me as the observer.

So, here’s what I observed in an e-mail I sent to her occupational therapist. “Mia has embarked on teaching herself to do a ponytail on her own hair. She has many of the concepts and steps but not all so is getting frustrated. I am looking for ideas and ways to support her. She puts the elastic on her left hand, uses both hands to gather the hair into her right hand to hold it there. She uses her teeth to get the elastic from her left wrist onto her left hand, and then manages to get it around the bunch of hair somehow but gets frustrated and stuck after that. She then claims her hair is tangled and embarks on a lot of spraying of leave-in-conditioner and brushing with her left hand which migrates her part further to the right. Can you help Mia work on this, break it down, etc?”

Then, I went online and searched for “one-handed ponytail” and posted to ask other families with stroke survivors for their experience with kids learning to do ponytails. One replied that her daughter had learned at age eight. Another told me how ambitious Mia is to be attempting this so young.

I thought about putting out elastics of various size and texture to let Mia experiment. But, life is busy, and I haven’t done much to support her, and still she’s learning, very much on her own initiative and with the ongoing model of Zoe.

At Mia’s weekly occupational therapy, that first week of March, they talked about how frustration comes with learning something challenging. They experimented with doing things in front of Mia so she could see and feel to get the concepts more solid. The therapist even offered that Mia could try on her hair. Instead, they made a bunch of yarn to use for practice. And, in that way, Mia learned the concept of twisting and doubling over the elastic to loop it through a second time.

I’ve seen Mia successfully make a ponytail in her hair once. Even doubled over, the elastic was too loose and fell out after about half an hour. I had no idea she could do pigtails, and since I didn’t see her doing them, I don’t know exactly how she managed, except that she must have reached over around her head to do the major work with lefty.

Since I don’t have good video of her working on this new skill, I thought I’d share another recent clip of a different self-defined fine-motor task. I got the girls new socks and Mia set herself the task of folding them all into balls. Enjoy and look to see how she uses her two hands differently. And, if you listen, you’ll hear Zoe in the background, alternately vying for attention and cheering Mia on as she folds socks. That’s our normal. Zoe said just this morning, “Mia’s learning early with the pigtails and ponytails!” Mia’s persistence, determination and inner drive are all quite remarkable, even more so because she’s not yet five.

Update from March 21, 2014

I managed to capture a video of Mia making a pigtail. Notice how she gives each of her hands different jobs at every stage of the process. And, you can see her moment of pride as she accomplishes what she set out to do. Enjoy!

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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Fall Activities 2013

School has started for both girls. Zoe is in first grade. Mia is in Pre-K. Along with school, come the fall activities. Here are the girls last Saturday at their first soccer games. Mia has a half hour of practice before a half hour scrimmage. Zoe practices on Mondays and plays on Saturdays.

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Last fall, as Zoe was entering kindergarten, and Mia was moving up to a preschool classroom, and we were preparing to welcome our first au pair, we kept activities to a minimum. Mia had occupational therapy once a week. Zoe joined the cast of her school play in October. And, we waited until November to add swimming and skating lessons.

I wasn’t as careful this fall. Both girls have been asking to play soccer and to try gymnastics. I agreed to both. Zoe swims well enough now that I’ve decided she can continue with swimming lessons in summer camps unless she wants to swim instead of some other activity during the school year. Mia is still learning to swim independently and it’s very therapeutic for her to be in the water so she has swimming lessons once a week.

Activities started last week. Here’s our crazy schedule on top of school:

  • Monday evening: Zoe’s U8 soccer practice
  • Tuesday early afternoon: Mia’s swimming lesson
  • Wednesday right after Zoe’s school: Gymnastics for both girls
  • Friday morning: Mia’s occupational therapy
  • Saturday: Both girls have soccer at various times that sometimes conflict
  • Sunday morning: Hebrew School for Zoe

I expect that Zoe will want to participate again in her school’s bilingual musical, with rehearsals roughly every other Thursday starting in October and going into February.

Zoe wants to play ice hockey. It’s hard for me to resist this one as I played from age eight through college, and more occasionally after that. It’s possible she’ll start hockey in late November after soccer season is finished. She could have started in September but it felt like too much with soccer being brand new. Last spring, Zoe also took an art class which she loved. She’s asked about that again too and I said not now.

I could not possibly do this level of activities without the assistance of our au pair who helps with gear and transportation and snacks. We’re getting ready to transition our second au pair in less than three weeks. I have created a detailed schedule and Google Map with the locations of the girls’ schools and all these activities for she will have to learn fast how to help transport them to most of their weekday activities.

For Mia, the structured activities are definitely therapeutic. Swimming, soccer, gymnastics will all help with balance and coordination. Having some variety is good. I just need to see how the fall goes and find out if we have enough time to integrate all the variety.

I struggle with finding the balance. Is this too much? I want my kids to have down time too. I felt a little better as I sorted through pictures for this post and found plenty of them playing outside in unstructured ways in the past few weeks. I hope we don’t lose that.

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Hiking through the woods
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Riding bikes through the neighborhood
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Mia just running at the park!
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IEP Meeting a Success

This is one in my May streak of posts to raise awareness about pediatric stroke. If you’re able, please contribute to my fundraising efforts which will help support Children’s Hemiplegia and Stroke Association, an organization that has given our family much support and information.

This morning after Mia’s Friday morning occupational therapy (OT) session, I had her Individualized Education Program (IEP) meeting with the therapist while our au pair took the girls to school. It was really easy and straightforward and Mia will continue to receive OT for another year once a week for 30 minutes at the public preschool. A few days ago, I wrote about my Vision Statement which is part of this process.

The goals in the IEP, drafted by the occupational therapist and jointly discussed and revised, are required to be extremely specific and quantifiable even when a lot of interpretation is needed to see if Mia is meeting the objectives.

Her overall goal is:

Mia will demonstrate improved functional upper extremity and hand skills as evidenced by the following objectives.

Here are some of her new objectives:

1) Mia will demonstrate improved fine motor control and dexterity as noted by her ability to utilize pincer grasp patterns, with her right hand, to independently string four 1″ beads, on 75% of opportunities. [Needs to be edited to specify that the beads be in Mia’s right hand as it’s easier for her to put the string in her right hand.]

2) Mia will demonstrate  improved bilateral and fine motor control as noted by her ability to complete a 2-4 step origami paper project, demonstrating 1/3″ accuracy and precision of each fold on 75% of opportunities.

3) Mia will demonstrate improved active range of motion of her forearm as noted by her ability to achieve at least 55 degrees of supination [palm up] during functional tasks, on 75% of opportunities.

4) Mia will effectively incorporate the use of both hands to complete a multi-step fine motor project requiring coloring, cutting and/or gluing, following a visual model of the project, on 75% of opportunities.

I am really happy with these objectives. They are realistic, creative, challenging, and appropriate for Mia who will be turning four in less than a month.

I’m also happy that now that she’s already on an IEP and just continuing it, there’s no need for a break in services. She will continue to see our awesome occupational therapist through late June when the school year ends, and she’ll resume again in September. This is in contrast to last spring and summer when we had a 5 month break in services because her occupational therapist through early intervention moved in April so Mia lost out on her last few months of Early Intervention services and the school-based IEP services didn’t start until September. Only kids who would show a greater than typical regression over the summer qualify for summer services. All kids are expected to regress some over the summer which baffles me, at least at this age. I hope to see Mia progress over the summer.

And, I’m happy that we have a wonderful occupational therapist to work with Mia every Friday morning. When I was first approaching this world of the IEP, I wasn’t at all sure how it would be and I was reserving my options to decline services and figure out another way if it wasn’t working for Mia or for me. For example, she could go to outpatient occupational therapy, which our health insurance would cover for some number of sessions per year. Logistically, that’d be more complicated, requiring more driving and scheduling and copays. I’m glad we don’t have to do that right now!

Sadly, I don’t get to observe Mia’s OT sessions anymore. Here’s an old video from January 2012 when she was 2.5 in her junior preschool classroom. Notice how well she is connecting the elephants and how she uses both hands to do it. Every day, her teachers would put out activities on that round table that were good fine motor practice. They took suggestions from me and from Mia’s therapists through Early Intervention but they also know that what’s good for a child with any kind of special needs is often good for all the children in the class.

Vision Statement, IEP 2013

This is one in an ongoing streak of posts everyday through May to raise awareness about pediatric stroke. If you’re able, please contribute to my fundraising efforts.

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This vision statement below is also something I had to write to prepare for Mia’s Individualized Education Program (IEP) meeting on Friday. I’ve been writing this kind of statement at least once a year since Mia was an infant. Before she turned three, she had Individualized Family Service Plan (IFSP) meetings and documents. Now that she’s three, she has an IEP.

Last spring, I was very anxious as we approached her first IEP meeting. When she was receiving Early Intervention services from about 1 month until 3 years, she qualified simply due to her diagnosis. They have a list of diagnoses that automatically qualify and stroke is on it. Every six months, they would adjust her services based on her developmental needs but there was never a question of her not qualifying. The Early Intervention program is pretty warm and fuzzy, at least in our experience. They made house calls to visit Mia at home or daycare, and the support is for the whole family. We didn’t need many of the supports they could have offered but I felt glad knowing that if someone needed help with transportation or interpreting what doctors were saying, they’d do all that.

The rules change once kids turn three. Services are only approved if a child’s impairment limits their ability to learn in school. I educated myself by attending a couple of workshops run by Federation for Children with Special Needs. These workshops scared me. The parents who teach these workshops have become advocates and teachers because of really awful situations where services were denied. I feared a very adversarial first IEP meeting. I took our former physical therapist with me to that meeting. The meeting was fine. The public preschool occupational therapist said Mia barely qualified. The public preschool physical therapist said she didn’t qualify. That was fine with me as I wanted Mia to have occupational therapy but not physical therapy. I requested that Mia get to work directly with the occupational therapist instead of the occupational therapist assistant. I also requested an 8 am time slot. All of my very reasonable requests were honored and we have been working with the same therapist since September. She’s told me that she plans to recommend Mia continue occupational therapy one more year so I’m not particularly nervous for Friday.

Here’s the vision statement.

Vision Statement for Students Eligible for Special Education

Parent: Mara
Student: Mia

1. My child’s strengths are:

Mia is happy, curious, motivated, has good attention, perseveres, has strong problem solving skills, and is very empathetic.

2. My child’s areas of significant interest are:

Mia loves books, climbing, jumping, running, riding her bike, doing the monkey bars, talking, singing, puzzles, arts and crafts, playing with her sister and her friends.

3. My concerns about my child’s educational progress are:

Given Mia’s medical history and limited functional use of her right arm and hand for fine motor tasks, I am concerned primarily with optimizing her dexterity for an increasing range of tasks of daily living and learning. I am concerned about both fine motor skills needed for academic tasks like coloring and writing and skills needed for independence in manipulating the objects in her daily life like clothing and food containers so she can be as independent as her peers with toileting, managing her snack and lunch, and helping in the classroom.

4. My goals for my child over the school year are:

I expect Mia to adapt to her new preschool classroom (transitioning in June) and fully participate in all classroom activities developing socially, emotionally, physically, and cognitively as appropriate for a 4 year old.

In terms of Mia’s functional use of her right hand and arm, my goal is that Mia gains control and dexterity to do increasingly complex functional tasks that require her to relax excess tone, supinate her arm, and use differentiated movements of her thumb and fingers. I believe that strength and dexterity support each other. As Mia can do more, she will gain strength, which will support her further development.

5. My vision for my child over the next three to five years is:

Over the next three to five years, I expect Mia to enter elementary school with her peers, capable of mastering the independent skills of learning and the life of the school needed to thrive in her early elementary years.

Parenting Reflections at 3 years 11 months

As part of my Streak for Mia, I am writing daily in the month of May to raise awareness and funds for pediatric stroke survivors.

In a month, Mia will turn 4. Most people who look at her wouldn’t know that she had a stroke at birth. I know this because I’ve had this conversation many times. Another parent will marvel at how fearless she is, how skillful on the playground. I will appreciate the comment and sometimes add that it’s even more remarkable given her early beginnings. Then I share that she had a stroke and most people are completely caught off guard. Really, babies can have strokes too. Mine did.

Here she is at 4 days old, having an EEG to characterize her early seizure activity. She also has a feeding tube in this picture which she needed briefly as I was working hard to reestablish breastfeeding when she was extra sleepy because of the antiseizure medications.

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I see her stroke in everything she does. I see some of her quirky patterns of movement. I see all that she can do, all these newly emerging skills like her bicycling and monkey bar feats, and it all seems that much more significant because there was a time when I really didn’t know how her stroke would affect her.

I have looked with these eyes, seeing everything and doing everything to ensure the best possible learning environment for Mia. I’ve worked hard to find the right balance of approaches, some combination of Feldenkrais, occupational therapy, constraint induced movement therapy, and fun everyday life with me and Zoe at home and with friends and teachers at preschool. I’ve managed countless doctor’s appointments, navigated the IEP process, advocated for Mia with each new set of therapists and caregivers. All the while I have had an ongoing sense of not know if I am doing enough or maybe I am doing too much. Self doubt like this is hard to grapple with when life feels a lot like treading water. Being a single mom to two young girls while working full time is already more than enough to fill my days. Adding in the extra work of tending to Mia’s special needs has kept me just this side of survival mode for most of the past four years. Each year as we approach her birthday, I have a little bit of PTSD as I remember how intense it was at the beginning, the not knowing was as intense as the actual day-to-day realities.

But, here we are, approaching four years and I am starting to feel really different. I feel great joy at seeing Mia blossom in every way. I’ve been able to make enough time and space to blog here, to share some of our exciting triumphs and ongoing challenges. I have enough perspective to celebrate our accomplishments as a little family.

We have a dinnertime ritual of sharing a rose, a thorn, and a bud where the rose is something good that happened, the thorn is something challenging, and the bud is something that you’re looking forward to soon. Tonight, I shared a combination rose and bud. I told Zoe and Mia and our au pair that I am really happy because today, I got e-mail from Dr. Karen Pape whom I wrote about in my Neuroplasticity post and wrote to within the past week with some questions and observations. She replied today and wants to feature excerpts from my Monkey Mia post in her blog and direct her readers to my blog. This feels like such an honor.  Her vision is maximal recovery from early neurological injuries so each child can achieve his or her personal best. At the dinner table, we all celebrated the news, Mia for learning the monkey bars, Zoe for being her inspiration and cheering her on, Citlali for taking her to the park and sharing the joy I have in seeing these skills emerge. What a gift.

All the while, Mia feels like she can do anything. And, that’s by design. Here she is enjoying a rope swing yesterday!

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Mia Practicing Writing her Name

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!

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Happy Mother’s Day

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!

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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.

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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.

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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.