Tag Archives: stroke

Neurologist Visit – 4 Years Old

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Mia and I went to see her neurologist yesterday afternoon. It took most of the afternoon. She was nearly asleep when we arrived at the hospital in Boston which made her kind of cranky for the wait, compounded by her accidentally spilling her orange juice and then requesting another one. I said no. A young resident came out to tell us it would be another 15 minutes after it was already 15 minutes past our scheduled appointment time. I later learned that the resident is an adult neurology resident on her mandatory 3-month stint in pediatric neurology.

When the nurse came to take Mia’s vitals, Mia did not want to get on the scale. I said she weighs almost 40 pounds. She just had her physical. I don’t want to fight with her about this as it’s not really relevant to her appointment today. Mia then cooperated to get her height measured and to have her blood pressure taken, also both not particularly relevant.

When the resident did finally call us into the room, she asked me some questions that were annoying and not particularly useful, like, “So I was reading her chart, and it looks like everything’s been fine since she was 3 months old?” Yeah, I guess, if you define fine as no seizure medications needed since then. I simply said yes. I continued to answer her questions. She tried to engage Mia and Mia decided not to talk but to giggle instead. She asked Mia to touch her finger and then to touch her own nose. She asked her to do it with the other hand. Mia did. She asked her to jump up and down on one foot, and the other. She tried to test her reflexes. It wasn’t clear she got the response she was seeking.

After about 10 minutes, the resident went to get the attending physician. Another wait. Mia asked for my iPhone and I gave it to her. So when the attending came in, he had to persuade her to look at pictures in books instead of at the pictures and movies that she was trying to show him of her great skills in skin-the-cat, the monkey bars, bicycling, and others. He asked me more relevant questions, did a cursory neurological exam, had her name various objects and animals in a book and talk about their categories and functions. She sailed through all of this. He said she’s doing great.

The resident asked the attending if we should come back in a year. The attending paused to have a conversation with me. I questioned the value of hearing him say that she’s doing great. I know that. I explained that we go to the stroke clinic next month and will continue with that every two years until Mia is 10. In the end, we agreed that the resident would write “as needed” on the form, I will call the attending to discuss Mia’s progress in a year, and maybe he’ll see her in three years when she’s seven, if he hasn’t retired by then!

A year ago, I was really disappointed that he told me to bring Mia back again in a year.

So, I’m relieved now that he and I were essentially on the same page. These appointments are hugely time consuming and must provide more value than the one yesterday to justify the time. I’m grateful to have had high-quality care from this neurologist since Mia’s arrival in the NICU when she was two days old, but we’re well past that point. If any new issues arise, I won’t hesitate to seek care, and three years is a long time. It’s very hard for me to say whether I will think it’s worth it to try to go see him again then, and to deal with whatever resident is on rotation at the time.

There’s one other thing that bothers me about taking Mia to all these appointments, now at age four. She has to suffer through them too and I think it has an impact, hearing me answer all these questions, hearing me talk to the doctors. I’m totally comfortable explaining everything to Mia but I’d like to reduce the need for Mia to spend hours in waiting rooms and exam rooms, time when she would be better served playing at home or school, further mastering her world.

Hanging the New Climbing Rope

More than a year ago, I bought twenty-five feet of 2″ diameter untreated manila rope from Knot & Rope Supply, as recommended by another mom with a stroke survivor daughter. That mom and her husband have built all kinds of outdoor and indoor structures for their daughter’s therapy and rehabilitation. I had tips, pictures, inspiration, just not enough time to ever sit down to splice the rope to itself which was my planned next step.

Over the past few months I’ve been decluttering at home and the box of rope was just taking up space until I contacted our excellent arborist, John Platt. Over the past decade or more, I’ve had John help with thinning overgrown trees, removing a tree, and hanging a more traditional swing. He’s quite versatile and I was sure he could help with this project.

We set a time for 5 pm one weekday afternoon in early June and that evening’s entertainment was  top notch. You can click on any of these pictures in this post or others to see a larger image. I’ll let the pictures tell most of the story.

John arrived with a huge ladder and gear. The girls were entranced. He looked at the tree, we talked about whether the rope would be mostly a swinging rope or a climbing rope. I think it’s more for climbing though a little swinging may happen. There isn’t a huge space for a big swinging rope. Eventually, John helped us pick just the right spot.

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We had an interesting conversation about knots. I have a lot of sailing experience from my youth and still can tie many different knots. John had to get creative with the knot tying to get the big rope up into the tree and to keep it there. He attached his green rope to the big rope.

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He hauled the big rope up into the tree and tied it to a branch with a fancy knot that used minimal length as we didn’t have much extra rope to spare, based on the hanging branch he’d chosen as optimal. I think when I decided to order 25′ of rope, I was thinking of using a lower branch that John rejected as not strong enough.

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Zoe was captivated, watching him climb the tree.

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The girls continued to watch from a higher perch.

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John climbed down the rope to test it out and to tighten his knots up high. He even bounced to make sure it would hold him. He came all the way down and then managed to climb back up again too. No small feat. Remember this kind of rope in gym class? We talked about how these kinds of ropes are probably not in gym classes anymore. Zoe confirmed that.

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Zoe got a try!

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Mia too. You can see how her two hands are positioned differently on the rope. One of the ideas of this rope is that it’s so big that as she grows and gains strength to climb and swing, she’ll reach up high with both hands to get a nice grip like she’s already able to do with her left hand but not quite doing with her right.

We’re very much looking forward to sharing our new climbing rope with friends this weekend as we prepare to host Mia’s fourth birthday party.

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For those interested in this kind of project, the cost of the rope was $92.25 including shipping, and the cost of John’s labor and expertise was $95. So for $187.25, we have an awesome new addition to our back yard!

 

Reflecting on My Writing Streak

This is my final post in my daily streak in May to raise awareness about pediatric stroke and to raise funds for Children’s Hemiplegia and Stroke Association. As of now, with MathWorks anticipated match, I have raised $4470. I’ve been blown away by the generosity of friends, coworkers, and family members. I’ll still accept donations through Monday. It’s within reach that we’ll get to $5000. Thanks to all who have helped and if you haven’t yet, please donate if you are able to do so.

In March and April, I became intrigued about doing a streak for pediatric stroke. I was reading posts about other parents of stroke survivors as they announced their streaks and I knew that I had a lot to say and if I were to do a streak (31 days in a row of something), it’d be through blogging. I had notions of sharing 31 vignettes of Mia’s struggles and triumphs. I made lists of possible topics. I decided to do it. Then, I decided not to do it. The Boston Marathon tragedy shook me profoundly and delayed my plans to set up my blog in April. Zoe was having nightmares about the limited bits of news that she had heard from me and at school. And then May arrived and I started to dabble in streaking for pediatric stroke by posting tidbits on my personal Facebook page. I wanted to share more and so I dove in and have written nightly on this blog ever since.

The main cost has been lost sleep since I mostly write after the girls are in bed which often is not until 9 pm, sometimes later. My girls seem to do fine on 10 hours a night which doesn’t leave me much time to myself in the evening. Sleep is a big deal around here. If I get enough, I’m much more patient, able to parent in the ways I intend, and able to weather the inevitable storms that arise with young children. I’m constantly juggling a lot, too much really. With enough sleep, I make better choices, enjoy my girls more, and am more productive at work.

It’s been worth it to lose some sleep over this project though as there have been many benefits. I’ll summarize some of them here to wrap up this month of blogging every day to streak for Mia and pediatric stroke awareness.

Perspective

My perspective has shifted. Mia will turn four in June. So, for the whole month, I have have been reflecting on the past four years in an integrative and new way that is different from the day-to-day thoughts that come and go. This month, she has mastered riding her bike and learned to do the monkey bars, and because I was blogging, I had the opportunity to share those milestones in the full context of how remarkable they seem to me, given all the fear and uncertainty I carried through her early months and years. The more that Mia is able to do, the easier it gets to accept, acknowledge and embrace the whole story which includes both the joys and the challenges.

Writing

I love writing. That may be obvious. It’s been a longstanding hobby and coping mechanism. I keep lists and records of everything and use writing to make sense of my life and my experiences. I’ve had an itch for some time to write for a broader audience. Last Thursday, I finished my six-week writing course in creative nonfiction at Grub Street in Boston. Getting feedback through that writing class and from my blog readers has been a great boost to my confidence and only makes me want to do more. The daily pace is not sustainable so I aim to shift to something closer to posting once a week. I also plan to take advantage of some writing opportunities that arose from this streak. Specifically, I’ve been invited to guest blog on the Children’s Hemiplegia and Stroke Association site, chasa.org. Also, Dr. Karen Pape wants to point other parents to my blog and to feature excerpts from my Monkey Mia post on hers. And, I plan to edit one of my essays to submit to a magazine for publication. I have grander ideas too but it feels really good to be taking these baby steps and getting positive feedback along the way. That will help me to keep making time for writing which feeds my soul. Writing is something I do for myself, time I carve out when I am not caring for my children or working my day job.

Stroke Awareness

Over the past four years, I have learned a great deal about parenting a stroke survivor. I have muddled through parenting decisions for both Zoe and Mia, and I know a lot about what has worked for us. I care most passionately about making sure that my two girls have the best start in life that they can. And, it feels really good to realize that some of what I’ve figured out is helpful and inspiring to others. Having an opportunity to share more of what I have learned with the community of families that seek support through Children’s Hemiplegia and Stroke Association feels important and meaningful. Carving out time for this is my elusive challenge.

Connection

Perhaps the most meaningful aspect of blogging daily through the month of May has been the human connections that I have elicited. As people have read and been moved by our story, they have reached out to tell me that, in person, by e-mail, through comments, and through donations more generous than I would have imagined. More than one coworker has said that they had no idea what was going on behind the scenes of my life. By sharing some of my vulnerable moments out here in public on this blog, I’ve made it okay to talk about things that are often not discussed. The resulting conversations are deeper, more meaningful, and as a result it feels like my village is growing both virtually online and in real life. Thanks for reading.

Zoe drew this picture tonight and asked me to share it with you. It’s a clown and a dog. I am not sure how this clown connects to anything I wrote tonight. Let me know if you figure it out. In the meantime, enjoy the picture!

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Health Care, Logistics, and Finances

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.

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Invisible Disability

Thanks to all of our supporters, we’re about to cross the $4000 mark. Our fundraising page shows nearly $2000 but all of it will be matched by my employer, MathWorks. All contributions will go to Children’s Hemiplegia and Stroke Association to provide support and information, research and grants to other families like ours. I feel so grateful for the support and encouragement, both financial and emotional. It means a lot to have you reading my streak of posts in the month of May to spread awareness about pediatric stroke.

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If you look at Mia in this picture of her swinging, there’s no sign of her stroke. If you meet her, you’ll see a happy girl, eager to play, dance, explore, and sing.

There’s a paradox in parenting a child with this sort of mild disability. The better their recovery, the more invisible the disability becomes. On the one hand, this is highly desirable, a cure or “near-complete recovery” as one neurologist mentioned as a possible outcome in Mia’s first week after being diagnosed with her stroke. Of course, I want Mia to function as well as she possibly can in the world, so I am thrilled with how well she is doing. On the other hand, the less apparent her special needs are, the harder it is to advocate for her, the harder it is for me to get the kind of support I need to keep at it behind the scenes day-after-day and year-after-year.

In this month of daily blogging, I’ve gotten more comfortable with both sides of this paradox. Through sharing more of our story with a wider audience, I am somehow able to celebrate Mia’s successes against a backdrop of her challenges more fully, honestly, and openly. Mia’s triumphs on her bicycle and on the monkey bars are that much sweeter because there were months and years of uncertainty about how much functioning she’d gain. I’ve found myself walking this line repeatedly, grappling with how to optimally support her development and recovery while simultaneously accepting her just as she is right now. I’m convinced that both views matter to Mia, to Zoe, to me, and to others in our lives. I’m convinced that my combined celebration, vigilance and advocacy for Mia over time have made her near-complete recovery possible.

As  I write this, I am trying to choose just one picture or video to show the then-and-now of it. Here’s what I found. 

Mia started crawling in a dingy motel room in Western Massachusetts, where the girls and I spent one night to wait out a blizzard that hit right after Valentine’s Day 2010. We were driving back home from Ithaca to Massachusetts after an emergency goodbye visit to see my mother who had suddenly stopped talking and was in her final weeks of life. Mia was almost eight months old. Zoe had recently turned three. Mia’s crawling in her own way. Zoe is cheering her on and trying to help. I am observing, capturing the moment, and protecting Mia’s ability and right to move independently.

Letter to Mia’s Teachers

Tomorrow morning at my office, I am staffing a table to spread the word about pediatric stroke and to raise money for Children’s Hemiplegia and Stroke Association as part of my Streak for Mia. Many of my coworkers have already donated and with the company match, my fundraising total is up to $2910. It’s possible with tomorrow’s donations and match that I may make it to $4000 which would be fantastic. This post is one in a series through the month of May, only 3 more days left after today! Please follow the link above to donate, if you haven’t yet. If you have, thank you!

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As we returned home after the long weekend away, I am met with the seemingly unending task of managing our schedules and logistics. The school year is winding down, vacations and camps are scheduled. I think it’s a really good thing that I have a planning mind. I actually enjoy and am good at keeping track of many moving parts. Though, I often feel like I’d like the parts to stop moving and so I can get a break.

Mia’s preschool year ends next week. She’ll transition to the next class on June 10. To prepare, I asked the director of her preschool to set up a meeting with her teachers for next year so I can orient them to Mia’s medical history and developmental needs. I’ve done this with Mia’s teachers and caregivers every year. I explain that Mia had a stroke and how it has impacted her. I have a set of notes that I update each year and then review with the teachers so they can use it for reference. It’s time to update that. Here’s this year’s version of “How to Support Mia’s Development.”

How to Support Mia’s Development

Mia is a happy and curious little girl. She seems to be quite motivated to figure out how to do everything herself including gross motor and fine motor tasks. She loves to sit and read books to herself. She also is an avid climber outside. And, she loves doing puzzles.

Let Mia do as much as she can do herself, she will let you know if she needs help.

A rich sensory environment is helpful to Mia. Suggested activities: rice table, bean bin, bubbles in table, blowing and popping bubbles, play dough, slime, beading, cutting with scissors, all kinds of arts and crafts. Mia loves most sensory activities and will spontaneously use both hands.

Weight bearing on open palms is also really important for Mia, and easy to incorporate for all kids. Suggested activities: crawling through tunnels, animal walks (bear, dog, etc.), rolling over balls, wheelbarrows, climbing up and down climbing structures, side sitting with both feet to left while weight bearing on right open palm and playing with left hand.

Encourage Mia to use both hands, routinely. Bimanual (2-handed) activities are great, self-care is excellent. She can handle most of her clothing herself. She can use a soap dispenser to squirt soap into her own right hand, pushing with her left and supinating (turning hand palm up) with her right. She can do buckles, and other kinds of fasteners will be good practice for her. Bubbles (no spill container) and big balls are great two-handed options.
Also, do thumb and finger songs with both hands – “Where’s Thumbkin?”,  “high five” with both hands or “thumbs up” for good work.

It’s helpful to Mia to have activities that she can do on a vertical surface like a wall or easel (either table-top or standing easel). This helps her reach in a way that she will extend her right wrist and her fingers and her thumb will be more available for a proper grasp. Art, puzzles, felt board, magnets can all be set up on a vertical or inclined surface.

Mia may take more time to do things with righty, or to figure things out with righty. Please help support her by making her feel that she has enough time. Offer gentle encouragement, don’t jump in too quickly to help her.
Offer verbal prompts – “Remember to use righty.” “Point with righty.” “High 5 with both hands.”

Therapy: Mia receives occupational therapy at BLOCKS once a week. It’s usually on Fridays at 8 am so Mia arrives at school a little after 9 am those days as our au pair typically drives Zoe to school first then Mia.

Nutrition: Mia can drink water from an open cup. And, I will continue to send a water bottle and smoothie so she can drink frequently throughout the day. Mia is on a gluten-free diet to support better digestion and elimination. I will continue to send her snacks in addition to her lunch. I request that you not give her any of the standard snacks or classroom baked goods that contain grains. Please offer her water or her smoothie to drink but not milk. If snack includes fresh fruit or vegetables, she is welcome to have those. If you have any questions, please check with me before offering Mia something I did not send.

Thanks,

Mara

Bikes and Kite

Continuing my Streak for Mia to raise awareness about pediatric stroke and funds for Children’s Hemiplegia and Stroke Association.

I’m deviating here from some of my recent posts about the labor of parenting two to celebrate the joys this Memorial Day weekend. We’re on Cape Cod. It’s probably more work to travel than to stay home with little ones but it’s definitely worth it and getting easier as they get a bit older.

This morning, it was very rainy at home and we had some errands to do before hitting the road. We made it to Welfleet by 2 pm, checked into our hotel, and got settled a bit before our big afternoon adventure.

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We brought our bikes – Zoe’s 20″ bike, my old bike with a trail-a-bike behind for Mia. The northern end of Cape Cod Rail Trail is only about five minutes drive from where we are staying so we parked there and got the bikes off the rack and connected the trail-a-bike to my bike. At home, they stay connected in our shed for quick trips to the playground which we’ve been doing on nice evenings this spring. But, this was our first longer ride as a biking trio. The last time I biked with them on the Cape was two years ago and they were both in a bike trailer so it was a lot of work for me.

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We probably rode five miles total, a stretch along the rail trail, then we turned on the road toward Marconi Beach. Sadly, the beach access was washed out by winter storms so we looked wistfully at the Atlantic Ocean.

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We had picked up a new kite this morning and the plan for this afternoon was actually Zoe’s idea. She said she wanted to bike to the beach and fly the kite. We couldn’t fly it on the beach but the parking lot was empty so we had fun with the kite anyway.

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On the ride back to the car, it was windy and misty so we stopped to put on rain pants and jackets. We drove back to town. The girls and I had a nice dinner and everyone will sleep well after the biking adventure.

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We are meeting up with another family tomorrow, a friend and her two girls (6 and 2 years old). We’ll try the bay side tomorrow and Monday as we think there will be sure beach access for kite flying and shell seeking and knowing my kids some splashing too even if it’s still 60 degrees.

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.

Mia’s Language Development

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.

A quick post for a busy Thursday. I have my last writing class tonight.

Last week, Mia said to me, “I have something interesting to tell you.” I don’t remember what she told me after that, only that it cracked me up how she prefaced her news. She also has been telling me, “Mommy, you’re not listening to my words.” This is usually when I am trying to prepare a meal or get us out the door.

Her language is excellent for a nearly four year old. She makes some common mistakes with grammar for irregular verbs. The ones I notice most often are around verb tense for phrases involving “take” or “took,” “bring” or “brought” and similar pairs.

Her stroke was in the left side of the brain in a region that could impact speech. So far, it doesn’t seem to be holding her back from expressing herself. She sometimes searches for words and that slight delay may be related to her recovery from her stroke. But, overall her language acquisition, pronunciation, fluency have all been right on track.

Zoe sometimes corrects Mia’s pronunciation and grammar. I try to coach her to just say it herself the right way without being in Mia’s face about it. I explain that if she is in Mia’s face, Mia is more likely to get mad and lash out.

Mia is very creative and playful with her language. Here’s a recent video of her inventing a song. This video also shows some of Mia’s habitual patterns in her right arm. You can see at different parts of the video that her right elbow and wrist are flexed when her left arm is long. At other times, she uses her arms beautifully together to gesture.

For fun, here are Mia’s first signs and spoken words. She was born June 19, 2009. So, she started signing just before 10 months of age and started speaking just after 12 months.

Signs
4/10/10 – milk
4/26/10 – waves for “hi” and “bye bye”
????? – more
6/2/10 – all done
6/24/10 – dog
6/26/10 – bear
7/03/10 – hat
7/03/10 – duck (actually signed dog when seeing ducks)
7/05/10 – baby (when unable to sign “milk” due to lefty being wrapped)
7/05/10 – thank you
7/06/10 – no (shaking head)
7/06/10 – yes (nodding head) imitating Zoe
9/08/10 – bird
9/16/10 – book
9/19/10 – duck
9/19/10 – fish
9/19/10 – no
9/21/10 – bath
9/25/10 – hot
9/29/10 – house
10/9/10 – airplane [20 signs]
10/19/10 – wash

Words
07/05/10 – ny ny (for “milk” or “night night,” not sure which)
07/17/10 – alligator (imitating Mara while doing puzzle)
07/26/10 – ma ma
07/26/10 – all done
07/29/10 – hi
9/05/10 and earlier yummy
9/05/10 cat
9/19/10 cheese
9/21/10 Natalie
9/21/10 Bzzz (like a bee)
9/21/10 mi mi (for milk) 11
10/3/10 row row
10/4/10 moo
10/4/10 baah
10/5/10 ball
10/5/10 bow wow
10/16/10 this
10/16/10 what’s this?
10/16/10 lion
10/16/10 mine
10/16/10 more [21 spoken words]
10/16/10 woof
10/17/10 pee pee
10/17/10 please
10/17/10 e’s (for Zoe’s shoes)
10/18/10 baby
10/18/10 bug
10/18/10 shoes
10/18/10 socks
10/18/10 banana
10/19/10 eye
10/19/10 nose
10/19/10 hand
10/19/10 mouth
10/19/10 night night
10/24/10 eggs
10/24/10 look
10/24/10 chicken
11/1/10 look
11/1/10 here
11/1/10 there
11/5/10 dog
11/6/10 uh oh [43 spoken words]

Giving and Receiving Help

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.

MiaConstructionGear

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.