Homeschooling & Chronic Illness ~
Written by Lusi Austin from That Homeschool Life
We didn’t homeschool because of chronic illness. The decision was made to homeschool to support our autistic son’s needs 15 years ago. However as medical diagnoses came our way, homeschooling has become even more valuable to us.
At the start of our homeschool journey, I was in remission from my first auto immune disease diagnosis: a rare bleeding disorder affecting 3 in every 100,000 Australians. I’d had a splenectomy in 2005 after other treatments had failed. Prior to that illness, I’d never been sick in my life.
But all of a sudden, life became complex. There were medications to take, appointments to keep and ongoing paperwork. Then there were complications encountered post-splenectomy as I came to terms with having a very compromised immune system.
I remember reading once you have one auto immune disease, you are more susceptible to another. However I could never have imagined what that would mean for me or our family. Today as it stands, there are 12 auto immune diseases diagnosed between myself and our children (hubs has none).
Mine are ITP (Immune Thrombocytopenia Purpura), Raynaud’s Syndrome, Systemic Lupus Erythematosus, Secondary Sjogren’s Syndrome, Hashimotos Thyroiditis and Fibromyalgia. Between my children the diagnoses are ITP (also in remission now), Raynaud’s Syndrome, Ulcerative Colitis (Pancolitis), Coeliac Disease and Crohn’s and insulin dependent Type 1 Diabetes. Another child shows signs of Raynaud’s and there is a tentative diagnosis recently of psoriasis for one child.
I’m not sharing this for pity or sympathy. We actually love our life and have learned to accept the challenges sent our way (even while still acknowledging that things are very hard!) So why am I sharing this?
I share so you know you’re not alone if you too are struggling with homeschooling and chronic illnesses. I want you to know that it is not only possible to homeschool with illnesses, but that there are amazing benefits to doing so.
The gift of self-pacing
Being able to set the pace of our days, weeks and months has been one beautiful benefit of homeschooling. At the start of each week, we write up a big list on the white board. This has ideas for things we would LIKE to cover during the week.
We know we won’t always get through everything (or sometimes anything!), but we at least have something to aim for.
Sometimes we’ll wake up after our diabetic child has had a hypo (or two!) through the night leaving us more tired than usual. A flare for our child with IBD (inflammatory bowel disease) might mean that we cancel plans out in the community and stay home for the day. We have learned to set our own pace and this has brought us a sense of freedom and agency that has been very liberating.
Some days, we couch-school reading book after book or watching documentaries curdled up with snacks and blankets. It all depends on how we are managing and how we manage our symptoms. But rather than seeing these harder days as failures, we see them for what they are: the chance to connect and regulate.
Homeschooling and Chronic Illness
Sometimes the learning that we can manage is situational. If we are in hospital for a stint, we ‘count’ and record the learning that we are doing as we are there. Let me give you an example.
One of our children had to travel to receive monoclonal chemotherapy treatments. She was incredibly ill and there was no way that we could have tackled bookwork at that stage. So her learning revolved around where we were, what we did and what we saw while we were there.
During 12+ hour infusions, she was using a DVD series to distract herself and pass the time. We often talked about plot, character development and what she was loving about the series. I took photos of that and I noted down the learning (part of the requirements for me in our State).
We pushed her around in a wheelchair and took note of all the amazing artworks, sculptures and photographs that adorned the hospital. Our rural hospital is small so this was a visual feast for the eyes. Again, I made note of this.
If she read a book, I noted it down. When she couldn’t find a video of what to expect with that treatment, she decided to make one for others. She took small videos and then edited them in an app on my phone.
This fitted in perfectly with technology and her photography elective that she was taking at the time. And by the end of those four weeks, we had an amazing collection of learning experiences.
Care is King
For us, taking care of ourselves means taking a read aloud to a local café. At other times, it looks like each of us staying in bed a little longer in the mornings or going for a walk. Caring for ourselves is another important life lesson and one that we can demonstrate practically to our kids.
Sometimes, caring for ourselves has meant accepting offers of help or outsourcing help when we’ve needed to. On a practical level it can mean pairing things up so we are making the most of our trips. For instance, if we are needing to leave the house to get needle tips for our diabetic child, then we might pair that up with stopping by the library or local art gallery since we are already out.
For anyone else homeschooling with chronic illness, I hope my sharing helps you feel seen and known. It is my great hope that we are all able to find connection, encouragement and strength for each of our days.
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