Tag Archives: Mara

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.

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!

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

Cape – Sunny Day Adventures

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:

Mia, Patrick, and Zoe snacking:

Mia, Zoe, and Patrick climbing rocks:

Mia, Avery, and Zoe at beach entrance:

Mia and Zoe shocked at the chill of the water:

Zoe, Avery and Scarlett:

Mia helping:

Avery and Zoe helping:

Cape – Rainy Day Adventures

We’re still on the Cape, enjoying fun times with friends despite raw rainy weather.

This post is to extend my Streak for Mia to raise awareness for pediatric stroke and funds for Children’s Hemiplegia and Stroke Association.

Full days of adventure are exhausting for all. So, instead of many words, I’ll share a selection of pictures.

After two rounds of breakfast, one at our hotel and one with friends, we sought refuge from the rain at the Massachusetts Audubon Sanctuary which has a nice visitor center and hiking trails. Then we had lunch with our friends, play time on the playground and on the beach. Late in the afternoon, we met up with a third family for mini-golf and dinner.

Tomorrow, the weather promises to be beautiful. We’ll try for another bike ride and some time at the beach.

Mia playing with shells:

Zoe and Mia playing with sand and shells:

Zoe and Mia with some whale bones when it stopped raining:

Zoe and Mia walking around pond:

Still walking around pond:

Zoe flying kite on beach:

Mia flying kite on beach:

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.

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.

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.

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.

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.

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

“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.

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.

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.

Potty Talk

We have a lot of potty talk around here. At dinner tonight, it started as the game of telephone where each person was supposed to keep the same first word and change the rest. The variants ran along these lines, “Poopy, patter, paw, paw!” And so it goes. I let the potty talk go on freely, hoping it will help everyone feel less inhibited with the actual act.

Humor is essential here as it’s a mighty serious subject and without some levity, I would have lost my mind a long time ago. This may be the hardest aspect so far in parenting Mia through her recovery from her stroke. It may be too much information for some of you but I am sharing it so it’s not such a taboo subject as I think that just makes it that much harder.

First the facts. Both of my girls struggled some with constipation as older infants and toddlers. Zoe learned relatively early to use the potty for both pee and poop, well before age 2.5. And, at around 2 years 8 months, she complained that the night time pullups were giving her a rash and went cold turkey.

Things with Mia have taken a different path. Her constipation was a bit more intractable. I asked her neurologists about it when she was 2. They denied any relationship between her stroke and digestive issues. This is interesting because among the families on the Hemi-Kids mailing list and Facebook group it is a frequent issue for kids who have had neurological injury early in life. Conventional treatment is to use Miralax but that’s not actually been demonstrated to be safe for children for years on end which is how it’s often used. I was uncomfortable going that route. So, as usual, I researched and experimented until I found my own way.

Last February when Mia was 2 years 8 months old, we were on vacation and she hadn’t pooped in a few days. When she finally did, we completely changed her diet to cut out most grains and dairy. She went 4 days in a row and spontaneously started to ask to pee on the potty. At the time, I thought this was our breakthrough and we’d be doing the elimination diet for a week or two more and then slowly reintroducing foods to figure out which ones to avoid. Here we are more than a year later.

The elimination diet was not the magic bullet. We tried an even more strict version of it with everything homemade from whole foods, absolutely no packaged or processed foods at all for a month. Try that. Completely impractical for me as a working single mom. We introduced probiotics. I started buying raw milk and fermenting my own kefir to make smoothies every morning. And, we started a behavior-based program called Soiling Solutions last June. It’s essentially a program to help Mia poop every single day. Thankfully, our new pediatrician is on board with this approach. At least she was last year when I shared a letter with her explaining it. We’ll see what she says at Mia’s four year well visit.

We schedule our “poopy time” to be right after dinner. The program consists of up to four rounds of this routine – sit on potty for 3 minutes, relax and play elsewhere for 10-12 minutes, repeat. On the best days, she goes on her own before the designated time. On the worst days, it takes an hour including a gentle inducer (glycerin suppository) after the second unsuccessful sit and occasionally a more harsh inducer (saline enema) after the fourth sit if she still hasn’t produced.

When we started this last June, it was pure torture for Mia, me, and Zoe. Zoe became the hero because in the early days we were having to do the full routine almost every day and since I was bad cop, Mia needed Zoe to comfort her. Now, it’s almost Pavlovian. We use kitchen timers for the 3 minute part and the 10 minute part. The girls watch a show on Netflix Instant in between the sits and Mia likes to pause the TV when she goes to sit. She still asks for Zoe to sing or hum to her if we have to do “bum bum blastoff” which is the name they coined for the suppository because it looks like a rocket ship, of course.

Even this protocol has not completely resolved the issues but it does ensure that Mia goes every day and that means she can be in underwear at school and all day, staying clean and dry which is hugely important for her self esteem.

She goes more often on her own initiation than she used to and I keep hoping that soon she’ll figure out she can go on her own all the time. But, in the meantime, we have a strict routine that we follow 6 nights a week. The one night I am out for the evening, our au pair asks Mia to sit and she occasionally poops for her. But, more often, she skips a day and then spontaneously initiates on her own sometime the following afternoon.

We’re gluten-free at home and a bit more flexible when out and about, but still really careful. I still make kefir from raw milk and send smoothies with Mia each morning. Zoe has a love hate relationship with these smoothies. I like them. Mia has special gluten-free treats in the freezer at preschool so she can have something at times when others bring in birthday cupcakes. Her teacher checks with me regarding ingredients if they are doing a class baking project or taste test.

We ended the evening with another potty ditty, “Girls go to college to get more knowledge. Boys go to Jupiter to play with all the poop there.”

Mara Yale

Body and brain teacher and scientist, mom

Tag Archives: Mara

Invisible Disability

Letter to Mia’s Teachers

Cape – Sunny Day Adventures

Cape – Rainy Day Adventures

Bikes and Kite

IEP Meeting a Success

Mia’s Language Development

Giving and Receiving Help

Vision Statement, IEP 2013

Potty Talk

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