I've tried to start this post a couple of times. I want to share but not overshare. Everything I do share here, I share with the permission of the ill people of whom I speak. I want to paint a real picture of what has been going on for me/us but also not say too much because quite frankly, a) it's overwhelming and scary to share b) it's not just my story to tell. On the other hand I'm acutely aware that our journey and struggles may be able to help others know that they are not alone. I have searched for others' stories and the ones I have found have been very encouraging and have made me feel less lonely.
So this is the edited version. The version I'm probably going to leave up and not delete when I overthink things. This is the version I am happy for you to read and in doing so, hopefully help you understand what it's like to homeschool with chronic illness. I also hope that if you have chronic illness (or if your child does) that you will feel known.
We must find a way to speak about the experience of being chronically ill, a way that shows the strength and unwavering fortitude of so many who live this kind of life. We need to see illness in the vastly diverse ways that it impacts us: how we are challenged by it, and how we are transformed by it". (Parsons, Unseen. Chapter 16).
When things get tough and overwhelming, I tend to go to ground. I shy away from sharing. I get stuck in the safety of not sharing because I don't want people to think I'm trying to gain pity or that I'm whinging or whining about our situation. I am also acutely aware, that the longer this journey goes on, the harder it is for other people to hear about. In general, most of us can cope with someone being ill in the short term but we don't really know what to do with those living with illness day in and day out. It's hard enough for me to live with the unpredictability of my symptoms but for others it's hard to understand what's going on, when they are watching on through a lens that we provide for them.
So many questions can arise when illness is long term....like....
"what is wrong with you again?" or
"but you don't look sick" or
"what can you eat?" or
"when do you think you will be better?"
"I thought you might be up to it since I saw you out last week?" or
"have you tried xyz...my mother's aunt's neighbour's plumber had great success with this..."
It's hard to live it and it's hard to know what to say, hey? I get it. I've been on both sides of the fences...the side where usually sickness is just acute and in a few days, all is well again. I've also been on this side where things don't resolve and yet you still have to find ways to carry on. Sometimes the best things people have said are, "How are you going?" "I'm sorry things aren't great". "I'm here for you" or "I'm thinking of you". These simple things can really mean so much. So here I go with sharing a little from our lived experience of homeschooling and chronic illness and how the two can actually work together.
LIVING IN THE 'UNKNOWN PLACES' We are in an 'unknown place' again now. Myself and our son. There are lots of appointments with specialists. There are medications to keep track of, to trial. Some medications need to be increased and others weaned off. There are forms to fill out. There are referrals I have to request from our lovely Dr and his kind receptionist. There are doses I need to have altered and our super kind pharmacists who never get impatient with me. There are tests, tests, and more tests to make sure levels stay where they need to and our beautiful blood/stool/urine collection team who feel more like friends than anything else. There are things to order online, tests that have to be booked in and cards to carry in our wallet so we can access toilets quickly. There are things we can avoid eating but even then, we know we can still flare. There are colours and temperatures and things we need to observe, note down, take photos of. It is currently a season of vigilance as we wait to see which medications work and in which doses.
So what happens if you find yourself in a similar position? Maybe you or your child are sick and you are homeschooling either because of it or despite it! There are many of us doing just that and while I'm no expert, I thought I'd share a few things that have helped me along the way.
1. REMEMBER THAT LEARNING HAPPENS ALL THE TIME
It's hard to let go of the feeling that you aren't doing 6 hours of learning each day but even in school, a child doesn't get six full face-to-face hours of learning in. What our kids at home have is an opportunity for us to facilitate their learning in a way that best caters to their interests, engages them deeply and honours their unique needs. We can also homeschool around our own needs too. (Ps: If you are worried about not spending enough face-to-face hours with your kiddos compared to maybe what they'd have at school, you might enjoy THIS post).
Finding your rhythms that naturally work for you is important. Don't plan for lots of early morning learning if you know you are struggling with pain in the mornings. Do what works for you and your little fam bam. If you have to travel each week to therapies or appointments, why not add in some 'car-schooling' via games or audio books? Find your natural rhythms and go with them! (You can read THIS post about rhythms I wrote and shared here on my first blog back in about 2009 or 2010!)
2. WE PREPARE FOR OUR GOOD, HARD AND BEST DAYS
We have a PLANNING MONDAY session most weeks that works really well to anchor us. Each person gets a chance to say what they'd like to do and next to each activity I'll sometimes list if it's an independent activity or one that we need to do together. This is helpful for the mornings that I am having a slow start...the kids know what they can go on with by themselves. This has helped my older kids navigate independent study too. Added bonus right there! Of course this might not work for you like it has for us. Finding your own groove takes time and that's ok too. Go easy on yourselves as you find your way.
On our 'best day's (the ones usually with less pain/less fatigue/less toilet trips) we aim to leave the house for out-of-the-home learning activities. It might be a craft class or a Minecraft group or a visit to the local library. If we stay at home, we play games that normally take too much energy or we might bake or do art (which I find I need more energy for than normal).
Our 'good days' are usually when we have some moments where things hold together ok in between pain meds, toilet trips or naps. On these days we fit in read alouds, some structured learning like working through some of our fave workbooks, lapbooks or printables but usually we are at home because symptoms are a little unpredictable.
And on our hard days? Well sometimes it's a bit like when I was a kid in school but a casual teacher would come in for the day, popped on a movie for the kids to watch while we coloured in stencils ;) We tend to do a bit of couch-schooling or bed-schooling on these days. Games are sometimes played in bed, favourite movies or educational doco's are watched with cuddles, audio books are put on or kind friends come and pick up kiddos for a playdate. (You might like to read THIS post I wrote on one of my hard days).
3. MAKE YOUR SYSTEMS AND RESOURCES WORK FOR YOU
We try to do this by having great resources on hand. I have spent some of my 'best hours' and quite a few spoons on grouping our resources at home and organising them in a way that is accessible - easy to pack back up and get out again. I wrote THIS post about resources with LOTS of suggestions in it that you might find helpful. And THIS post is about making your resources work for you!
In our family, one of our 'systems' is that we meal plan for a week and then repeat that weekly plan for a second week. We shop for the fortnight of meals and each person gets to decide what they'd like to cook for the week. 3 of my children are older teens/adults but even our 10 and 12 year olds cook. HERE is a printable menu plan I made of easy meals that needs little to no help.
If you can afford it and you need to outsource help, then do that and feel guilt-free about it! There is NOTHING wrong with making your resources work for you in this season. It's wisdom!
4. BE FLEXIBLE AND ADAPTABLE
Learning opportunities can happen anytime and at any place! It doesn't have to be sitting at a desk between the traditional hours of 9-3. If, like me, you find the mornings very difficult, be flexible with your afternoon hours and do your more structured tasks then.
Sometimes the most engagement has happened for us when there is no tangible way to dissect life from learning.
Be willing to take the moments when you can get them (depending on your symptoms/your childs'). You might like to read THIS blog post where I shared about one of those types of days ;)
5. EMBRACE THE SEASONS AS THEY COME
There are no easy fixes sometimes for the seasons of life that we have to live. No rhyme or reason to its happening but there can definitely be purpose in every season, even in seasons of pain and hardship.
I'm not talking about pretending this is easier than it is or trying to wish it away. Not at all, friend. If you are reading this, and you are hurting, I'm sorry. I too know what it feels like to grieve the loss of dreams, the heartache of not being able to do as much as you once did and the pain of the present circumstances.
But just as nature teaches us, in life there are seasons. Sometimes there are seasons where we thrive and other times there are seasons where we barely survive and even then, we don't know how. But for the grace of God go I, right?! Embracing the seasons for me means recognising my limitations, accepting offers of help and making learning-bucket lists that we might do one day when I feel up to it or when my child does. It means packing a few read alouds, audio books for our car trip and card games to play during hospital stays. It means encouraging my kiddo to stay connected with his sister in their Minecraft world even during periods of hospitalisation. It means aiming for a big family movie night together when we are all back home again.
I hope this has been an encouragement to anyone who is struggling. I pray you will feel understood here and that your heart is a little lighter in some way.
Sending you love and hugs and I'll be keeping your in my prayers. Lusi x