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This post is a long time coming, but I wanted to wait until I was ready to write it. I’ve alluded to having chronic illness in our home if you’ve heard any of my guest moments on podcasts or G+ Hangouts or seen my mentions in Instagram posts or Facebook, but I haven’t really written about it. Until now. You see, our twelfth grader, Ethan, has Lyme disease.
In order to give this story context, I’ll provide a brief timeline of his illness. He was diagnosed with Lyme in September of 2014. The diagnosis shed light on a summer of unprecedented fatigue for him. One which we chalked up to his new job at the grocery store and keeping up with the busy life of a teen. Given his symptoms and the fact that the positive Lyme test showed it was not a new infection, the doctors estimate he was bitten in April of 2014. We never saw the tick and never saw a rash. What followed diagnosis was an intense period of pain along with extensive damage to his central nervous system and other Lyme symptoms throughout the fall of 2014. He had the customary antibiotic treatment, but he did not get better. Finally, after 9 months of no real improvement and some setbacks despite continued antibiotics, we made the decision to take him to a Lyme specialty clinic in Washington, DC. He’s been in treatment there since August, 2015 and from that time, they have given him two years to full recovery.
Life Is Full of Unexpected Interruptions
Two years to recovery and the road is difficult and slow. His symptoms persist and his treatment is extensive. Two years to recovery. This is his senior year. He cannot sit and work for any real length of time. He has brain “blips” where his cognitive processes are interrupted. He can be working on a problem and have a complete blank on what is next. He’s learned to do a reset and find his thought again, but you can imagine how this affects performance on the SAT. It takes a great amount of energy to prepare college applications and keep up with your regular school work. Ethan has been unable to function at his normal level for almost two years. He sleeps every afternoon for several hours. For the first time in a year and a half his nerve pain is under control. It’s not gone, but it is more reasonable. We are just in the past couple of months seeing him make connections again and his sharp intellect is beginning to return. But, reading still gives him headaches. And he can’t think for long periods of time. He has to go back and check all of his work. It’s fraught with mistakes.
This past weekend, we finally made the decision, with him, to not graduate him from our homeschool this year. He wants to finish well and he has goals he’s been unable to meet. So, Ethan is still a senior. He’s not a graduating senior.
The great thing, if one can, is to stop regarding all the unpleasant things as interruptions of one’s “own”, or “real” life. The truth is of course that what one calls the interruptions are precisely one’s real life- the life God is sending one day by day; what one calls one’s “real life” is a phantom of one’s own imagination. – C.S. Lewis
Homeschooling Students Who Have a Chronic Illness is meant to encourage those of you with chronically ill children as you face the task of educating them. I’m sure the illnesses are unique to each student and they bring with them a host of challenges everyday. During the duration of Ethan’s illness, I’ve developed some strategies that you may find helpful.
Know Your Child
This is the starting place. Only you know the symptoms of your child’s illness and know them well enough to know when they can work more easily and when they cannot. As for Ethan, his symptoms include extreme fatigue, nerve pain, headaches, disrupted sleep, and cognitive difficulties like brain fog and just interrupted thought processes among many other things.
- Know what they can do under what circumstances– One look and a general demeanor are instant giveaways for Ethan. It’s obvious when he is unable to focus and work on school. These are days when he sleeps a lot and only does things that don’t require thought.
- Consider the nature of the illness– And at what stage. Sometimes the start of something is more intense than the long term symptoms especially when you are still working on a diagnosis. Some of these ideas may not work if you know your student has trouble hearing or can’t sit for a long time, etc. Adapt ideas to your situation.
- Learn the best times of day to approach school tasks– Ethan has a window from about 10 AM until about 1 PM depending on the day. We’ve determined this is the best time for him to work.
- Watch for Signs of Depression– It seems that everyone is worried about this one. Who wouldn’t be a little depressed when you feel terrible most of the time and can’t do much? And with so much sleep, who can tell? So, it’s important to keep an eye on this for sure. In Ethan’s case, when he feels well, he is a joiner. When he doesn’t, he is not. So, it is encouraging that he still wants to tag into the game when he can. If he were to shrink back from things all the time, we would investigate that.
Avoid Outside Obligations
Perhaps this goes without saying for you. Or you may still be struggling with this concept- trying not to give up on an activity that has always been enjoyable. For us early on, things had to drop away. This included discontinuing our writing workshop and a homeschool teen council both of which I organized. He could not be expected to go above and beyond in extracurriculars when we was struggling day to day to stay awake or to just function on basic tasks.
- Keep to very few– Only keep the most favorite or the most doable for your child. Make sure it is in line with what they are able to do physically and emotionally.
- Assist them in keeping deadlines– Remember that whatever skills they might have when they are not sick are likely diminished when they have flares.
- Check in with the organizer– of any activities or groups where your child may have responsibilities. This is true even with teens and perhaps especially with teens who will have more obligations you are not directly involved with. I learned this one the hard way. I’m all about my kids achieving independence and keeping their own responsibilities together. I did not realize until it was much too late that he was dropping things that needed to be done. He was unable to remember things he needed to remember and often was too tired or not feeling well enough to follow through. It would have been better for me to have kept closer tabs on that- not to be an enabler, but to allow him to participate well enough while not feeling up to par. While at the same time, not dropping the ball. Ultimately, I did step in to be sure he finished some tasks. Unfortunately, it was after a lot of frustration on the organizer’s part.
- Let go of the reward mentality & allow participation– One example for you, we stopped requiring church on Sunday morning for him to be able to attend youth group in the evening because his inability to tolerate church in the morning was not related to his ability to get to youth group that evening. If he feels awful in the morning and could reasonably get to youth group, we send him. So, worry not so much about allowing events or activities when normal expectations are met and focus on encouraging them when your child is feeling well enough to go.
This is probably one of the most difficult things to implement. Whether it is for a season or for longer term, chronic illness forces a homeschool mom to reevaluate priorities and to adjust expectations for her student. The quicker you can do this, the easier it is for both the student and the teacher.
- Avoid Online Courses– The outside accountability doesn’t do anyone any favors when a student is sick. Ethan was enrolled in a Potter’s School class and I worked with the instructor all year. She was very gracious, but those courses took all his time and energy. He may have had a more well rounded year had we not had those formal obligations. That said, he adored both classes!
- Trim Down Your Academic Goals– When you have a student who lives with pain and other acute symptoms daily, you will need to shave off some goals and focus on what is most important at that time.
- Include Therapies in Your Plan– When Ethan was feeling poorly for extended periods of time, I often encouraged games like 2048 and other puzzles and word games. We called it brain therapy and he needs it. We still encourage brain work to stretch those connections.
One of the most frustrating things about chronic illness is the unpredictability. One day your student can be high functioning and the next day he may be unable to get off the sofa.
- Be Prepared to Switch Gears– If there is a curve ball one day, do what you can and change up your activity. If we had planned to write an essay, we watch a video on the topic instead.
- Plan Less & Be Prepared More– I find it isn’t worth counting on time daily for academic work. Instead, I am ready when he can work.
- Slow & Steady Will Win the Race– I find it best to move day to day and not think long term too often. The planner in me wants to project down the road, but things are so up and down it is difficult to do and when things inevitably need to be changed around it will just frustrate you.
Be Prepared on the Good Days
The last thing a chronically sick student can do, is to know what’s next each time he sits to work. The best thing I can do as a mom and a teacher is to have a “go to” list of school work which can be checked off when it’s complete.
- Develop a Plan– Determine what will need to get done for a given time period in the school year.
- Make Checklists– As pictured above, I make lists of what the assignments are for each subject area. When he is prepared to work, he can consult the list and no energy is wasted on what comes next.
- Leave work in a way that makes it easy to pick up the next time wellness allows it- You don’t want the threshold for pulling out work and doing it to be so high that another choice is easier. If you can leave work nearby and accessible, it will be easy for the student to pick up where he left off.
Have a Plan for Bad Days
I made a folder for Ethan which has his lists in it. Some of the lists are tasks from this year’s courses. Others are for make up work from last year. However, there are days when he doesn’t have the energy to focus on coursework but he can do other tasks requiring less focus. Here’s a list I came up with:
- YouTube Playlist– Create a play list of videos which related to his courses of study or are of interest to the student.
- Documentaries– These can be related to coursework or just related to your student’s interest
- Books– Sometimes reading can be a distraction even when they don’t feel well.
- Audio Books– For when reading isn’t possible and watching a screen is not desirable
- Oral Activities– Discussions and conversations about a subject
- Current Events– There’s always something going on in the world around us and especially for older students this is a great place to begin.
Chronic Illness Affects the Whole Household
Admittedly, although we do not take frequent rides on the crazy train of life, Lyme disease has slowed us down even more. When Ethan was acutely sick and newly diagnosed, I had to be available. Though he was 16 when he was in the most pain, I couldn’t leave the house for long so we all stayed in and enjoyed some other ways of spending time.
- Make Sure You Get Breaks– This goes for mom, the caregiver, and siblings. Get out and go do some fun things that you’ve had to take a break from for a time.
- Be Sure to Keep Treasured Activities– If your kids have something they love to do, then try to keep those things. But, know that sometimes you simply cannot and that will be ok too.
- Be Kind to One Another– You are bound to be edgy with so much happening. Remind everyone to be kind. It goes a long way.
- Don’t Take It Personally– People in pain often lash out and Ethan is no exception. We can all tell when he does not feel well and he can be pretty foul. I have learned not to take his tone of voice or the things he might say without thinking personally because it’s the pain talking, not him. I remind his siblings about this as well. That makes it a whole lot easier! Now that his pain is better controlled we see less foulness. But, don’t be fooled. He’s in some amount of pain most of the time.
A Note about Lyme Disease
This post would not be complete without a PSA on Lyme disease. If you live in the northeast or east coast, Lyme is endemic. It’s no joke. Protect yourself from ticks and other tick borne illnesses by eliminating exposure and checking for deer ticks which carry Lyme. There is great controversy surrounding the existence of chronic Lyme disease and I’m not interested in debating it. The following are a few websites you may want to visit for more information:
- International Lyme & Associated Diseases Society– A non-profit, multidiscplinary medical society dedicated to the appropriate diagnoses and treatment of Lyme and associated diseases. You can contact them if you have concerns about Lyme and they will give you the name of Lyme literate doctors in your area.
- Lyme Rehabilitation Center– An interesting article on the opening of a center specifically to help Lyme patients recover. It emphasizes the long term effects Lyme can have on people.
- Information on Lyme & Its Co-Infections– Information on Lyme tests and protocol for treatment along with co-infections. There are a lot of other microorganisms which can join the party with Lyme exasperating symptoms and not necessarily addressed with mainstream treatments.
There are numerous childhood conditions and diseases affecting many children today. I have friends who have children with diseases that can make them very sick even if they can achieve remission sometimes. Ethan has a nasty case of chronic Lyme Disease, but his prognosis is good. In time, his doctors expect him to make a full recovery.
Approaching education with a chronic disease is a constant challenge and I’m thankful we are able to homeschool our high schooler. Half of his high school career has been spent dealing with Lyme and its co-infections.
I am encouraged by small progress and I am hopeful for those of you facing the same challenges, quite possibly for longer term. Stay the course!