10 Tried-and-Tested Tips for Parenting School-Aged Kids When You’re Chronically Ill

Congratulations, you got through the hands-on baby and toddler years, with all the sleepless nights and endless diaper changes! Now that your kids are going to Kindergarten or elementary school and becoming more and more independent, you will get some freedom, time and energy back, right?

Kids between the ages of 4 and 12 are building their own lives, with school, sports and hobbies. But they still need plenty of practical help and guidance from their parents, whether that’s playing taxi, checking up on homework, packing school and gym bags or managing their social calendars with play dates, birthday parties and extracurricular activities. And that’s assuming your child is perfectly healthy and happy, otherwise your to-do list includes plenty of doctor’s visits, dental checkups, physical therapy or resilience training against bullying too.

Managing your kids’ lives can be challenging and overwhelming for any parent, but even more so if you’re living with a chronic illness like MS, diabetes or rheumatoid arthritis. Your health condition can limit your mobility, making it difficult to drop your kids off at school or take them to piano class. You probably also don’t feel like having kids over to play when you’re having a migraine attack, just like severe fatigue and chronic pain may stop you from being able to attend your child’s sports game. Not to mention that symptoms popping up suddenly messes up the best laid plans.

But somehow, your son or daughter has to get to school and swimming lessons in time, no matter how good or bad you feel. And you want your kids to have a happy childhood with play dates and fun activities, without being hindered by your illness.

How can you manage your school-aged (4+) kid’s life while managing your own health?

A lot depends on your specific condition, your family and living situation, your neighborhood and your country’s schooling system. Not all of the advice given below will suit your needs or be applicable to your situation, but hopefully you’ll find some helpful suggestions.

With that in mind, here are 10 tried-and-tested tips on parenting school-aged kids when you’re chronically ill.

1. Set priorities based on your family’s values.

Let’s face it: we can’t do it all, even if you were completely healthy. Everybody has a limited amount of time, money or energy.

So if you had to choose, what matters to most to you and your family? Do you value a healthy lifestyle, good manners and a strong work ethic, having fun with family and friends, or going on adventures? And ideally, what do you want your kid’s childhood to look like? Are you drawn to a simple lifestyle filled with unstructured play and outdoor time, or would you like your children to be able to explore all the amazing possibilities – martial art class, book club, learning languages – life has to offer?

There are no right or wrong answers here, getting a clear pictures of your family’s core values in life simply helps you to design your lifestyle and schedule accordingly. Setting priorities also makes it easier to say no to other (fun) plans and obligations, and save time for what’s most important to you. Say your kids love joining all kinds of sports and creative hobbies, then cooking meals from scratch might be lower on your priority list.

So gather everyone round the table to discuss what’s most important to your family.

2. Divide and conquer.

We’ve all heard the saying: it takes a village to raise a child. So you shouldn’t feel bad for not being able to do everything by yourself. Parenting – with or without chronic illness – requires a lot of time and energy, so let’s take a look how you can ‘divide and conquer’.

If possible, get your partner and/or your child’s other parent involved too. Make a list of all the tasks involved in parenting, from helping with and at school, organizing after school activities, teaching them practical skills like riding your bike, and arranging birthday parties. Next, divide these tasks by interests, (physical) strengths, energy and available time.

And don’t forget to include the invisible ‘third shift’ – the planning and scheduling that goes into running a family. The constant remembering to wash your son’s gym clothes in time, get a birthday present for that party, schedule appointments at the hair dresser’s, sign up for summer camp and buying a large size shoes before your daughter’s upcoming ballet recital takes up a lot more mental energy than it looks like from the outside.

One way to share the cognitive load too is to let one person be responsible for an entire activity. That means, for example, that my husband is not just responsible for taking our kids to swimming practice, but he also pays the contributions, packs their bags and has to remember when they have to practice swimming fully clothed.

Remember it’s ok to ask for help when you need it. Consider carpooling with other parents in the neighborhood to school or art class, or alternate watching each other’s kids for an afternoon (if your health allows, of course). If you can afford it, you can also make your life easier by ordering groceries online, getting help cleaning or hiring a babysitter for a few hours. You don’t have to do it all alone.

3. Develop supportive routines.

It’s not just babies and toddlers that thrive on routines – big kids and their parents can benefit from them too. Even the morning rush hour at home runs more smoothly if we all know what to expect and can fall back on daily habits.

As Wanda Belisle, a Registered Health Coach and mom of two teenage daughters who suffers from ME/CFS puts it: “If you have systems in place, it can make parenting with chronic illness more manageable. We use a family calendar where each person has their own block each day to record their activities. This keeps up organized and helped the kids take responsibility for what they were doing each day. I used stickers to make it fun.”

Part of developing supportive routines is preparing for the day – or even week – ahead. Natalie Hayden, a former TV news anchor and mom of 3 with Inflammatory Bowel Disease (IBD), advises: “Be as organized as you can. I find it helpful to have my children’s clothing laid out the night before along with their backpacks packed (change of clothes, thermos, folders ready to go with tuition/handouts, snacks) and then I get their lunch bags ready to go as much as I can the night before. I find doing this the night before helps to alleviate the stress of possibly not feeling well in the morning or trying to juggle three kids and get out the door on time. I also put a timer on in my kitchen that visibly counts down when we need to get out of the door.”

Having routines also helps you manage your own energy levels and symptoms better. Eileen Davidson, a single mum with a 9-year-old son and rheumatoid arthritis, says: “I’ve found it incredibly useful to develop a daily routine — albeit with wiggle room for unpredictable symptom overloads or unpredictable children. Over time, I’ve learned that I can’t pack as much into one day as someone without chronic illness. I have to spread things out in the week to not overwhelm myself. I stick to around three to five “big-ticket” tasks a day. This can include shopping, cooking, cleaning, or going to an appointment.”

In that spirit…

4. Leave plenty of room in your schedule.

When you’re living with chronic illness, you need enough white space in your calendar to deal with post-exertional malaise, an unexpected flare-up of symptoms or urgent doctor’s appointments. That’s why you don’t want to over schedule yourself – or your kids.

Like Natalie Hayden says, “As an IBD mom, I try to listen to my body and my symptoms and not over exert or put too much pressure on myself to over plan and schedule my day-to-day life with my kids. As a stay-at-home mom with three little ones, it’s oftentimes just survival mode. I find having crafts for my kids to do keeps them busy and is a win-win for me.”

Mariah Leach, a mom of 3 living with rheumatoid arthritis agrees: “One thing that has really helped me manage the chaos and my own health is to seriously limit the activities that my school-aged children participate in. We do this not only because of my limited energy/mobility, but also so that we can prioritize family time and outdoor adventures on the weekends. Spending time together and getting out into nature is key to maintaining my mental health, and it is also something we want to teach our children to honor in their own lives.”

It isn’t easy, but work out a schedule that meets both your kids’ need as well as your own health needs. And that includes planning time to rest before and after tiring events too.

5. Communicate with your kids.

Even bigger kids may find it difficult to truly understand why mom can’t pick them up from school anymore, or why dad can’t help out with homework.

Talking openly to your kids about your illness and the impact it has on all of your lives can help them make sense of the situation. During these conversations, you could also discuss or lay out some ‘ground rules’ together, like a maximum amount of playdates and extracurricular activities per week. Depending on their age, you could even ask your children’s input about how to handle certain dilemmas –  kids’ creative solutions will surprise you!

Also have an honest conversation with important people in your children’s life, like their teachers and coaches, about your limitations. As Wanda Belisle points out: “It is hard to ask for help or accommodations. Still, it’s better than being harshly judged by other parents for not volunteering. They may also be able to help arrange rides for your child to and from practice when you’re not up to taking them.”

Having said that, when communicating with your children about your limitations, don’t forget to focus on the things you still can do too. Of course you and your family will be disappointed from time to time that you can’t always join them, but you can still read aloud, do crafts or building Lego sets together. And things like having plenty of time for unstructured play turns out to be great for kids’ development too!

6. Work smarter, not harder.

When chronic illness limits your energy and capabilities, you have little choice but to work smarter, not harder. Here are some ideas on how to do that when it comes to parenting school-aged kids:

• If possible, let your kids play the same sport or instrument, if that saves you driving time and parental involvement.
• Playing taxi? Use your waiting time wisely. There’s nothing more annoying than being drained after waiting 45min in the car of cafeteria without actually having done anything. So either use that time for pacing, relaxing or self-care, or get practical and run simple errands. For example, during my daughters ballet lessons, I visit the library and get freshly baked bread from the bakery, or I sit down with a cup of coffee and a magazine.
• Plan one shopping day during vacations to build a basic wardrobe for the upcoming season. You could even check the collections online beforehand, to save you walking from store to store searching for clothes and shoes of your liking.
• Buy in bulk: get presents and greeting cards for all the birthdays and celebrations this month in one go. You could even get some generic gifts, like a small set of LEGO or craft supplies, as a back-up for weeks when you’re too sick to worry about getting the perfect present.
• Bad case of brain fog? Set (repeating) reminders on your phone that give you enough time to pack bags or return signed permission slips and library books.
• During busy periods with school tests and sports games, save yourself precious energy in other areas. Have a list of 7 healthy meals that require little energy to make, order groceries online or simplify household chores by using tools like a robot vacuum cleaner or a Crockpot.

Work smarter, not harder also includes…

… 7. Support your kid’s growing independence

Maria Montessori famously said: “Never help a child with a task at which he feels he can succeed.” 

This parenting philosophy becomes even more relevant when one parent’s abilities are limited due to pain, fatigue and disabilities. Obviously you do not want to overburden your children and put too much responsibility on their small shoulders, but supporting age-appropriated independence can make a big difference in your family’s lives.

Wanda Belisle agrees: “Teaching your kids to help out is one of the best gifts you can give them. And it allows you to use your energy for things like going to soccer games and gymnastic practice. By age 6-9, children can sweep floors, help make lunches, put away groceries, load the dishwasher, help with dinner, put away laundry, empty trash bins and mop the floor. In our house, we did ‘Soapy Socks’. When my kids moped, they put on microfiber socks, dipped them in the wash bucket and danced around the kitchen. It did require the floor to be towel dried in some spots, but we were creating memories.”

She adds: “Having a chore chart and sitting down each month to review expectations as a family limits nagging and fighting about whose day it is to do which chore.”

As long as your children do not have to take on adult-sized responsibilities and there’s plenty of time to be a care-free kid, growing your kids independence can also grow their confidence.

8. Make family memories in doable ways

“Use the energy you have for creating special memories with your kids, don’t worry about the mess in the kitchen”, Wanda Belisle says. “Your kids won’t remember going to school with watching socks, but they will remember the special moments you created.”

But how can you make family memories when you’re low on energy? Living with ME/CFS, Wanda has some ideas: “Have a fancy picnic in your bed, or ice cream Sundays. Get a cozy blanket to cuddle in, some popcorn and watch a movie or TV series together. With my oldest, we have a puzzle and podcast night. She gets to choose the podcast and I learn about her interests. Even if my brain isn’t up for the puzzle, I love spending time one on one.”

Depending on your health and family situation, you could also try to find creative ways to join in on the fun. If your family loves outdoor adventures, maybe you can rent a tandem bike or a beach wheel chair, or relax on a picnic blanket while they get active. When you can’t see piano recitals or ball games in real life, let a family member videotape (parts of) the event and watch it all together after they get home. On warm days, you could set up a daybed in the garden to watch the kids play. Obviously, you won’t always be able to work around your illness and limitations, but on good days, a little out-of-the-box thinking may be just what you need to make memories together.

9. Remember, self-care is a vital part of caring for your family.

As parents – and moms especially – you tend to put your children’s needs before your own. But like Eileen Davidson puts it eloquently: “It’s the old oxygen-mask-on-a-plane adage. You can’t take care of someone else until you take care of yourself. As a parent with health issues, you can not run on empty.”

Taking good care of yourself is also what Katie Thompson, an artist and disabled mother of two advises. “My best tip for parents with chronic illness is to be as flexible as possible, and that includes giving yourself enough grace and space to tend to your needs as well. Kids will always come first, but that means you have to be a close second. It’s really easy as a parent to give and go as much as you can without much regard for your needs. I prioritize myself through being intentional with my schedule and being flexible when the kids or I’s needs change. I think it’s an absolute must to prioritize your health with chronic illness, and many of us don’t have a choice. You have to make the time for important things like doctor’s appointments, therapies or whatever you need. 

Next, make an effort to do to or three things a week just for yourself, for pure enjoyment. Another trap we fall into easily is the thought that we aren’t worth prioritizing moments of enjoyment because we’ve already spent so much time taking care of our basic health needs. Set aside time to read that book, take that class or meet with a friend. It’s so important to maintain that balance of health and personal fulfillment as a chronically ill parent.

10. Finally: Don’t feel guilty.

It’ so easy to feel like you’re selling your kids short because you can’t do all the things you wished you could do. And you have every right to feel sad, disappointed and frustrated about your limitations.

But don’t feel too guilty for too long. You can’t do it all, and that’s ok! Even healthy parents miss sometimes sports games or ballet recitals due to work or divorce, or don’t put homemade meals on the table every night. We’re only human.

“There can be a lot of guilt and pressure involved with limiting your school-aged kids activities – particularly if you start comparing what we do to what other families we know do,” Mariah Leach from Mamas Facing Forward shares. “I sometimes feel bad that I am constantly allowing others to volunteer at school and events instead of me, and I have had passing thoughts worrying if I’m holding my children back by not enrolling them in more extracurriculars.

For more tried-and-tested tips on parenting with chronic illness, follow Katie Thompson (disability), Wanda Belise (ME/CFS), Eileen Davidson (rheumatoid arthritis), Natalie Hayden (IBD) and Mariah Leach with Mamas Facing Forward (chronically ill moms) on Instagram.  

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