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.
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 most 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.
The girls had a makeup class for gymnastics today as they missed their usual Wednesday class last week when we were traveling. I was able to go watch today for the first time, and was very happy to see them both enthusiastically practicing their skills.
As a young child, I was kicked out of gymnastics because I was not able to do handstands and cartwheels to someone’s satisfaction. And, then that story got told and retold by my mother in a way that was shaming. So, it’s with some relief and joy that I can see my kids in this environment that is clearly very fun and supportive.
Here’s Mia (purple leotard) in action, though somewhat distracted:
And, Zoe (black leotard) too, hamming it up for the camera:
Today, I chatted briefly with Mia’s teacher, who is not her usual teacher, and he hadn’t noticed her right side being weaker. He said she did great! It was hard to get good still pictures with the camera I had on hand so I’d like to go again with a longer lens to get some shots of Mia doing the crab walk and other weight bearing activities that are awesome for her strength and balance.
I struggle with wondering if our lives are oversheduled. It’s a lot to keep up with, even with the help of an au pair. But, then I saw the quality of teaching and therapeutic value of this activity and we’ll keep it for now. The next session starts next Wednesday for both girls.
In beginner hockey, the girls are improving their skating through practice twice a week, but the ratios are not great so it’s mostly through practice and less through instruction that they’ll learn. When we go to open skating, I can give my girls more 1-on-1 tips.
In contrast the gymnastics classes are small, and the teachers are insisting on proper form, offering lots of encouragement, and keeping an eye on helping the kids develop their skills. Mia’s class has three or four kids. Zoe’s may have six or seven.
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.
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.
As I wind down my Streak for Mia in the month of May to raise awareness about pediatric stroke, I realize I haven’t yet written much about navigating the health care system, insurance, and out-of-pocket expenses.
We are lucky in many ways. Our health insurance is excellent. We live in the Greater Boston area with its phenomenal health care services. I have enough room in my family budget to pay for expenses as they arise, to see a toy as potentially therapeutic and make the investment, to travel to other states to seek out special Feldenkrais practitioners. I am lucky to have a job and employer that have given me enough flexibility to attend all of Mia’s medical appointments and most of her therapy appointments.
Many people who parent children with special needs, including stroke survivors, don’t have the same resources. I believe that for Mia, early diagnosis, treatment, and ongoing support have been critical to her recovery. One study estimates that in the year after a childhood stroke, medical expenses average $43,000.
I haven’t taken the time to add up all of Mia’s medical expenses. Fortunately, I haven’t had to do that. Insurance covers most of it. I have made spreadsheets to track her appointments, to plan upcoming ones at a pace that is sustainable for our lives. I figured out early on that it was helpful to schedule one per week for a number of weeks in a row and then to have a break before the next round. In the early days, some of her doctors wanted to see her every 3 or 4 months. Having more than one appointment per week stressed our family schedule. Having weeks with no appointments was liberating and let us establish some normalcy. I also have spreadsheets that I have used to plan for and recover money from both health care and dependent care flexible spending accounts.
The hardest financial battle I had to fight was with the flexible spending account administrator over Mia’s “participation fee” for Early Intervention services. The fee is based on family income and size. When she entered the program it was $250 for six months of participation. When she had about a year left in the program, it tripled to $750 for six months. I knew about the increase far enough in advance to allocate pretax money for it in my flexible spending account. I debated about whether to continue with these services or to switch to outpatient services through Spaulding Rehabilitation Hospital. There was no way that I could have gotten Mia to a weekly session of occupational therapy at one of the rehab hospitals. Early Intervention came to us at home or daycare. Logistics won over pure finances.
A copay for one occupational therapy session is $20. So, even if we could go once a week, the copays for 26 outpatient therapy sessions would have been $520. I decided to stick with Early Intervention and pay the extra fees, counting on the flexible spending account to reduce the fee by using pretax dollars. I think it took three rounds of submitting the paperwork to finally get the reimbursement approved over a period of many months. They quibbled with it being called a “participation fee” even though they would have readily approved comparable outpatient expense of copays. I had to ask our Early Intervention liaison to make up different paperwork as justification. This was all very stressful. I can only imagine what others have to go through to justify insurance expenses routinely.
We have traveled to New York City and to New Jersey for Mia to have intensive series of Feldenkrais lessons over a period of days from two different practitioners who are particularly gifted in working with children. These trips have been paid for entirely by me, thousands of dollars and worth every penny for the gains Mia made in those trips.
My childcare expenses have also been impacted. Before this year, Zoe and Mia were both at the same daycare/preschool for the prior three years. When Mia was a little over a year old and Zoe was approaching four, a friend helped me realize that I needed more help as a full-time working single mom to two kids, one with special needs and extra appointments. So, in addition to two full-time daycare spots, I added a sitter three afternoons a week. Having another adult available to pick up my girls three days a week and to help with the crazy afternoon and evening routine helped tremendously. On the weeks when I had to take Mia to a late afternoon appointment, the sitter could pick up Zoe and play with her until we got home. A second sitter also came regularly on weekends for a four or five hour stretch to play with the girls so I could run errands or go exercise by myself or even just sit still and read a book. I gave myself a gift of four Thursday evenings out in the month of December 2011 with a sitter referred to me by a friend. After that, I kept her coming every other week for close to a year. While I really benefitted from having so much help, it was expensive to pay three different sitters hourly and a lot to manage logistically.
This year, with Zoe and Mia in different schools for the first time, I switched from daycare plus multiple sitters to having an au pair. Mia still goes to the same preschool. Zoe is in public school for Kindergarten and the au pair is available to work up to 45 hours each week so I am not attempting to handle getting two kids to and from two different schools. I consistently take one evening off each week from kid-duty. This has made a huge difference in my life and sanity this year! It’s definitely the right childcare solution for our family for the next few years and gives me a lot more flexibility, some built in times for respite, and continuity of care for my girls.
I’ll close this second-to-last post of the streak with a picture of just how crazy things can get around here. One night last fall, I was reading to Zoe in my room while Mia was playing in their room (too quietly). When Zoe and I went to investigate, we discovered that Mia had emptied every single item of clothing from her dresser. At moments like this, you can sit down and cry or laugh and go grab a camera. I chose the latter.
This post is to extend my Streak for Mia to raise awareness for pediatric stroke and funds for Children’s Hemiplegia and Stroke Association.
We’re home from Cape Cod, exhausted and overstimulated. I think both girls grew up overnight. When I said that out loud, Mia tried to show me how much taller she had gotten. I feel gratitude for our wonderful friends that make trips like this so fun, and for our au pair for being here at home to greet us and help pack lunches for tomorrow and handle some of the laundry. Reentry is going to be tough. My children did not go to sleep until after 9:30 pm tonight.
Like yesterday, I’m mostly sharing pictures to show what our day was like. We rose early, left the hotel, but not before having someone knock on the door for the second day in a row to complain that we were being too noisy above them from 6 am – 7 am. Yesterday, I opened the door and today I did not. I simply ignored it in favor of comforting one of my girls. They were not being excessively noisy, just early for someone who apparently was hoping to sleep in.
We had two big adventures with different families. First, we met up with Gabrielle and Patrick for a bike ride. We rode 10 miles! Having company definitely makes more miles easier to manage.
Then, we met Patricia, Avery, and Scarlett for some beach time on the bay side. It was cold in the water but delightful to be on the sand. The girls all played beautifully together.
Unfortunately, I got a speeding ticket as we were leaving the Cape. I was definitely speeding, and didn’t quite have my wits about me to justify it to the officer as my fight-or-flight reaction to being in the car as the only adult while driving my girls who were having the predictable but still challenging vacation-withdrawal meltdown. In fact, I think between where the officer claimed to catch me speeding and where he pulled me over, one of my girls fell asleep and missed the whole thing.
Zoe and Mia waiting in hotel while I go for one more load of our stuff:
Mia and Zoe resting and snacking during our bike ride:
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.
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 which will help support Children’s Hemiplegia and Stroke Association, an organization that has given our family much support and information.
“Mommy, can you help me put this glove on?” Mia requests at 10 pm, on a night when she wasn’t sleepy because she had napped. I look at my 3-year-old daughter dressed up in her big sister’s construction worker get up. She has on the hard hat, goggles, and a glove on her left hand.
I smile at how much ease and grace she shows when asking for help. I grab my camera to take a picture of her before I help her. The deal is that after I’ve given them bedtime snacks, a bath, helped with PJs, and read stories, it’s time for bed and if Mia isn’t tired, she can play by herself until she’s ready to be tucked in and then she can call for me to rub her back.
I squat down to help her thread her right fingers into the glove. It’s tricky for me. The glove is big. Her fingers on her right hand want to go together in pairs. She is patient as I work to find a spot for thumbkin, pointer, tall man, ring man, and pinky. She plays a few more minutes and then tells me she’s ready for bed.
When both of my girls were babies, I taught them sign language so they could share their needs before they had spoken words. They both learned signs for “more,” “milk” and “eat.” Animal signs were fun too. “Help” was one of the earliest signs I taught.
For me, this felt so significant. I come from a line of fiercely independent types who take great pride in doing everything for themselves. But, that’s had its costs. When people graciously offer help, I often don’t know how to receive it.
As I studied the books on baby sign language, I saw the sign for “help” and knew it was one I wanted to teach. To make the American Sign Language sign for help, you make one hand into a fist and use the other hand open, palm side up to lift the fisted hand. It seemed evocative of the human connection needed to ask for and receive help.
As my children learned to ask for help and I was responsive to their requests, I too learned something about asking for help more readily. I am a better mother when I get a break. It’s not essential that I pack every lunch, that I handle every bedtime. The girls have learned to welcome other caregivers into their lives so I get a bit of respite and am better able to respond to their needs when I am present with them.
When Mia asks for help, it has a double meaning for me. She asks freely as I taught her before she had spoken words. She also asks freely, aware that she has a hard time putting the glove on her right hand, but at nearly four, not yet expressing much frustration about that. She just knows that if she gets stuck she can ask for help. Sometimes my help will come in the form of working together as we do to put on her glove. Other times, it may come through a question I ask or a prompt I give her to try what she is doing another way.
I still value independence and perseverance, but right alongside human connection that comes from offering and receiving help. I want to model giving help as freely as my children receive it.
My six-year-old Zoe is often reluctant to get dressed by herself in the morning. So, I offer her help in other ways. We make a race – Who can be last? We see who gets their socks on first, we see if both girls can work together to beat me. And, through these playful approaches, I am helping her gain independence appropriate for her age.
I ask them for help too. They need to help clear the table, clean up after their messes, take out the recycling and compost. When they help me, they see that things go more smoothly, that I have more time to help with the more interesting requests, like, “Please sit with me to color this picture.” Or, another favorite, “Give me a piggy back ride around the house!”
Zoe announced last year, “I wish we had a dad.” I was prepared for this “daddy question,” so I simply asked her, “Why?” The answers can sometimes surprise single moms like me who started families on their own. Zoe replied, “So you’d have more help.”
I’ve overheard her answer a question from the neighbor kids about why we have two cars. She patiently explains, “One car is for our au pair. We have an au pair because we don’t have a dad.” Later, I remind her that she knows other kids who have an au pair and a mom and a dad. “Oh,” she says. I tell her, “Those families need help too.”
It’s quite a journey to see those earliest seeds I planted through baby sign language taking root and blossoming into a sense of compassion in my girls.
Continuing my writing and fundraising Streak for Mia, I am going to attempt to share something that’s tougher for us right now.
Zoe was nearly two-and-a-half when her world was changed by the birth of Mia. She had my full attention for all that time. It can be hard for older kids to adjust to a new member of the family under ordinary circumstances. But, the days, weeks, months, and years since Mia’s birth have been a little out of the ordinary, with a crisis time around when Mia was diagnosed and then a lot of ongoing extra needs that have consumed my time and energy. Zoe notices. It’d be hard for her not to notice.
Zoe is 6 now. Here she is this morning at our CSA farm where we spent the morning working and playing. Zoe and Mia got to spend a couple hours in the Children’s Garden while I helped plant and weed in the flower beds.
Zoe is delightful, smart, funny, very intense, and rather competitive. She is quite agile, loves art, is comfortably speaking Spanish at school and with our au pair, and has a phenomenal attention span for chapter books. The reading streak that Zoe and I have going is now on day 234! Mia sometimes joins us but it’s Zoe who is the one asking for and choosing book after book, requesting chapter after chapter. It’s the one sustained thing that she and I have together that feels very connecting for her.
She’s had a challenging time at school for the past 5 months of Kindergarten and just got a new teacher two weeks ago so we’re in a stressful transition time, working toward a positive end to the school year. I’ve been struggling since January to make sense of her difficulties at school. I have had many theories and done many experiments to try to help. The latest one seems like it may be closer to the root. Clearly, there have been classroom issues or they wouldn’t have abruptly changed the teacher with just seven weeks left in the school year. But, now that I know the kind of behavioral challenges Zoe is having at school, I see many of them seem to be related to the world not being fair. It’s not.
Last night, I started to talk with Zoe in more detail about what happened when Mia was born and in the NICU and how that might have felt to Zoe. We talked about all of Mia’s appointments and all the extra time she gets with me because of her stroke. Zoe was engaged, attentive, and at times upset and angry. She also had new insight when she told me, “I’m lucky.” I asked her why and she explained that she only has one thing wrong with her, big tonsils. She doesn’t like it when the doctors say she has big tonsils, she feels self-conscious about it. She asked me just last Saturday on the way to the doctor how many doctors she has compared to Mia, and she told me that Mia has had two problems – her ears and her right hand. I helped her reframe to focus on Mia’s stroke. Mia was in the car.
After our talk last night, I glanced at Facebook and Zoe was still with me. She saw a picture of a boy with some kind of bandage or cap covering his head and asked about it. I explained that boy had just had a hemispherectomy, a procedure to take out part of his brain so he wouldn’t have seizures any more. She had lots of questions and more empathy than usual. We talked about how that boy may have a sister or brother who might have feelings too. She got it. I hope we’re making progress. It’s true, life is not fair.
At every age and stage, Zoe is a bit older, a bit ahead on her ability to ask questions and that’s pushing me to figure out the language to use in front of Mia and Zoe to help them both feel whole, well, and fully part of our little family.
Here they are, in the Children’s Garden sandbox, playing nicely together.
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.
