The school year can take a big toll on parents, especially if you’re a parent living with a chronic illness. How do I keep up as a busy mom of two young school-aged children and manage my rheumatoid arthritis (RA)? Here is what helps me get through the entire school year — try some of these tips and find what works for you and your family.
Don’t Bend on Bedtime Routines
With RA, fatigue is often unavoidable. I have a joke in my house that I’m like Cinderella and I turn into a pumpkin at 9 pm no matter what. (I wish I could make it to midnight like the princess.)
We have strict bedtime routines. These start before I get too tired to help. My children take baths or showers, do homework, have activities, etc. — all before 8 pm. If it’s not done before then, I can’t help them, and they know this. Most importantly, we put our clothes out for the next day and pack up our backpacks. This saves a lot of time in the morning.
Use a Visual Calendar
RA is unpredictable — but your children’s schedule don’t have to be. Investing time in a shared, visual calendar is totally worth it to avoid any additional unpredictability this school year.
When my children can see their schedule, days are smoother. When my children were too little to read, I used a dollar store calendar and stickers to mark scheduled events. For example, days with scheduled baseball practice would get a sticker of a baseball bat.
As they grow older, we use more in-depth organization systems on our shared calendar. Now we are starting to share electronic family calendars, which is convenient and easy to change quickly.
Make Friends with Neighbors
Find other parents in your neighborhood that want to carpool. Find other children that walk or bike the same route to and from school. Talk with children in your neighborhood about looking out for each other. It’s a big burden to bear when you have unpredictable joint pain and fatigue, and you are the only person who can get your children to and from school five days a week.
If you haven’t already, build a team. Help the other parents and children as much as possible on your good days. Do a craft with the children on the weekends, bake a loaf of banana bread for their family, and offer to help with pick-ups and drop-offs on days when you know you can.
Easy Worry in Small Ways
When I worry, it seems to quadruple my exhaustion from rheumatoid arthritis. Knowing that my kids know their address and my cell phone number helps assuage any fears about them getting lost.
Before they were old enough to memorize this, I would write it on a card for them to keep in their backpack. This is something easy and cheap I do to maintain my peace of mind and worry less, which is always helpful when managing symptoms of RA.
If your children are like mine, back-to-school shopping goes well beyond the first week of school. Getting in and out of a car for an entire day, or even an entire weekend, is really straining on inflamed joints. To help me manage, I buy everything that I can online.
If going into a physical store is unavoidable, look online first. Have your kids narrow down the clothes and shoes they are looking for to focus your shopping trip. Some retail stores will even pull items for you before you arrive to help save time and walking. Take advantage of any free shipping and get bulky items like winter coats and boots shipped to your home.
Lessen the Lunch Load
For me, packing lunches, cleaning out lunch boxes, and carrying heavy backpacks with lunch boxes (and ice packs) is really draining on my energy levels. My children eat “hot lunch” at school every day. This has been the most spoon-saving decision I have ever made. I make sure my kids have a hearty breakfast at home before school and a healthy dinner waiting when they get home. I don’t waste a single ounce of worry about their lunch.
I understand that there are many special circumstances such as dietary restrictions, picky eaters, and cost. You have to do what’s right for you and your children, but consider off-loading this responsibility to the schools if possible. They are already set up for it.
Organize Homework Supplies
If you haven’t already, designate a time and space to do homework. Although this is best done at the same time every night, schedules can get complicated. Keep the area free of mess and clutter so that you don’t have to straighten up before starting.
Keep the pencils, tools, calculators, markers, etc. in one place. This way you don’t spend valuable time and energy looking for items prior to doing the work itself. I keep their supplies in clear, labeled storage bags, which makes it easy to reorganize, re-write, and replace them if needed.
Consider Before and After School Care
If you work full time, before and after care can be a life-saver. But you can also use this time to schedule medical appointments. It’s nice to know your kids are somewhere familiar, safe, and comfortable while you take care of yourself. I’ve even used this time for an early date night on occasion. Again, you need to consider if this is right for your family and budget.
Show Your Love
My mom used to write “love notes” to me on my napkins in my lunch or on post-it notes in my folders. It was so sweet because on a hectic morning, or a big test day, I would find it and know she loved me. I never thought about her chronic illness or disability at this moment, but just pure love and kindness.
Writing can be tough when you have RA, especially in the mornings. I found these small, affordable cards that are pre-printed with comics, animals, loving phrases, or even age-appropriate jokes. I buy these at the beginning of the year from the most popular online retailer (you know what I’m talking about), and simply sign “Love you, Mom.” It reminds them that I love and support them when they’re at school. It also makes me look very capable with minimal effort.
Plan for Holidays and School Breaks
Whether you’re a full-time parent, or work outside of the home, holidays and school breaks can be heavy on the mind for any parent, with or without a chronic illness. If you need childcare on these days, start with your local city programs. Kids usually love these programs because they get to play sports and games with friends they know and highly motivated teenagers all day. This is also safe, reliable, and usually quite affordable. The best part is they come home exhausted from being so active all day.
Another option is to ask other parents, who may be interested in splitting the scheduled holidays and taking turns caring for several children in your small group. These might even be the same families you already have playdates with, so your children are likely already comfortable in their home.
If your children are old enough to stay home alone, consider investing in a monitoring system to put your mind at ease. In-home cameras are very common right now and you can usually check them from your smartphone. Be sure to give your children who are home alone some structure, too. Delegating some simple chores can really help keep them out of trouble — and can help you budget your spoons, too.
I also use those random no-school, non-holiday days to catch up on my children’s medical appointments. Last month, we did eye exams, dental cleanings, and pediatric well-checks all on the same day. It was busy, but turned out to be really fun for the kids because they got prizes from three different treasure chests.
Don’t Overthink Playdates
Coordinating playdates can use a lot of spoons — but only if you let it. Remember that your children just want to be with other children. They don’t care (or notice) if there’s a pile of laundry that needs folding or a sink full of dishes from the night before. They really only want to play with each other. And if they’re hungry, keep it simple. They don’t need gourmet, organic, hot meals.
If your children are playing at someone else’s house, don’t waste your spoons thinking or worrying about them. Take that time for you and let your mind (and body) rest. Last month I was really low on spoons one Saturday and I was not feeling my best. I asked a neighbor if my children could play with her children at her home for a few hours. She, of course, agreed. I sent my children over with a stack of paper plates and napkins and had a pizza delivered to their address. The children loved the pizza, the mom was pleasantly surprised, and I got to rest for almost four hours. It was a win for everyone.
Become a Patient Advocate
One of the best ways to help people understand the challenges of living with a chronic illness is to raise your voice by becoming a patient advocate.
The 50-State Network is the grassroots advocacy arm of the Global Healthy Living Foundation, comprised of patients with chronic illness who are trained as health care activists to raise awareness, share their stories, and proactively connect with local, state, and federal health policy stakeholders. Learn more here.