Why Homeschooling Works for Our Medically Complex Family

If you asked our family of three how or why it started homeschooling, we’d most likely all agree the decision was partly circumstantial and, while not planned, homeschooling has been a surprisingly pleasant change for our family.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

Like the majority of American families, we were thrown into the deep end of the distance learning swimming pool at the height of the coronavirus pandemic back in 2020. The virtual classroom setting relieved anxiety for my husband and me; we didn’t know if the virus negatively impacted children with chronic conditions, like Landon. Diagnosed with a genetic connective tissue disorder called hypermobility Ehlers-Danlos syndrome (EDS), Landon has had a 504 plan in place since the first grade.

Section 504 of the Rehabilitation Act of 1973 offers children enrolled within a school receiving Federal financial assistance protections against discrimination and rights to access educational services that meet that child’s needs. Oftentimes, a verbal or written plan promoting a student’s ability to thrive during their educational career is crafted between the family and the school district. Unfortunately, these helpful mechanisms afforded while physically in a building weren’t easily modifiable in a virtual classroom setting.

Distance learning’s fast-paced culture made it difficult for Landon to step away from his laptop and take breaks without missing important information or assignments. Unable to effectively exercise his 504 plan caused Landon to become incredibly fatigued. His cognitive function was slipping to a place that was out of character; he was also exhibiting emotional distress. Fortunately, Landon’s therapist aided in identifying distance learning triggers that exacerbated symptoms. We then advocated for alternative and new accommodations that better transferred into a virtual learning environment. Landon made it through the fourth and fifth grades, meeting or exceeding expectations.

Our next challenge came as districts were returning to classrooms. Already riddled with fatigue, low blood pressure, dizziness, muscle weakness and pain from EDS and suspected comorbidities, we didn’t want to risk Landon having more health issues to grapple with at such a young age. That’s when we reached out to our son’s pediatrician for support and guidance. Prior to the start of the 2021-22 school year, Landon’s doctor felt it appropriate to submit a letter from his office to the district, requesting it allow Landon to continue his education at home. The district provided us with tutoring services through a third-party. However, for several reasons, it did not work out. We withdrew Landon from the school district and have been homeschooling ever since.

Being my child’s teacher took some getting used to. We homeschooled for pre-k and kindergarten, but that was quite different from educating my now middle schooler. I found myself doing a lot more assessing, grading, reevaluating, reading and planning than I did when Landon was just toddling around with finger paint on his hands. Admittedly, my initial teaching approach was too rigid and placed too much pressure on the both of us. I didn’t want this experience to resemble his distance learning escapade, so I stepped back and worked to change my expectations and vision of what learning “should” look like. This newfound fluid approach has made learning this year much more enjoyable.

So as to not offer solely my take on our experiences so far, I gave my son questions for him to answer on his own. Here are his responses:

1. Do you think homeschooling could be a beneficial option for kids with EDS or other chronic conditions? Why or why not?

Landon: Yes I do believe homeschooling is a benefit for kids with EDS or other chronic conditions. It offers a much more flexible schedule for kids when they may be having a chronic pain day due to their condition.

2. When you were in school you had a 504 plan which let you leave the classroom when needed to take breaks, rest in the office, have water at your desk and other helpful tools. Now that you are homeschooling, have you noticed if you are able to have the same amount of helpful tools and support like you did from your 504 plan, if you have less support or if you have more support?

Landon: I feel like I have more support than before. I am still able to get the things that I need such as water, rest and breaks, especially on fatigue days. The 504 plan at school was helpful, but compared to being at home, it didn’t provide as much help as I believe was needed. One time I was having bad neck pain when I was at school and I went to the nurse’s office. I was able to rest there with an ice pack, but being in such a loud school building, I wasn’t able to fully get rid of my neck/headache because of background noises and having no place for solitude.

One of the days I was at home, I started getting overwhelmingly tired. I was able to bring my school supplies up to my bed, do them slowly as needed, in the quiet of my room, resting whenever I felt like it.

3. Think about your lifestyle and interests. Has homeschooling added anything to your lifestyle, interests, hobbies, etc.?

Landon: Yes it has. During the course of homeschool, I’ve been able to discover my love for piano. I also have the ability to travel to places during the school week, such as New Hampshire, and pack my school work to do while there. Once I get my school done, I can go to places such as the farm near where we live.

4. Any final thoughts for readers learning about our family’s homeschooling adventure? 

Landon: Being able to homeschool is very helpful for kids with chronic conditions and has allowed me the time that I need to rest whenever feeling tired.

We’ve all noticed the advantages homeschooling offers to medically complex families like ours, so I thought it might be helpful to list some of the reasons why it’s worked for us:

Flexible, like us!

This applies to both how we structure the school day/week and accompanying assignments. On days that the fatigue monster pays a visit to our home, Landon can hold off on his work until later in the day, when he is feeling better. We can extend assignment deadlines or even complete makeup work on the weekends. Because we don’t follow the public school calendar, we decide which holiday observances to take off and if/when we want to schedule vacation breaks.

Time for health care

Scheduling appointments is much easier now that we can say yes to available openings. This has reduced a delay in receiving the care Landon needs without disrupting the school day. Goodbye doctor’s notes and hello to working around self-care needs!

504 plan 2.0

Landon has the ability to use ice packs, heating pads, pillows and his cane, any time, any place. Landon can also rest whenever needed and can (and does!) lay down in bed while doing some of his assignments.

No more attendance issues

Landon’s condition resulted in him frequently coming home from school before meeting the number of hours required to constitute a full school day. While the 504 plan requested that the district not count health-related circumstances to impact his attendance numbers, there were still hiccups with the district’s automatic tracking system. Now, schooling starts and ends based on his health needs; coursework can be moved to another time in the day or later in the week. If he doesn’t have the energy to type or handwrite, we verbally discuss lessons. Sometimes I’ll offer additional support by reading the unit lessons aloud; I’ll also supplement a reading section for an educational video on the same topic if he’s having a bad physical week.

Zebra mom-friendly

Due to my chronic conditions, getting Landon to and from school on time was a challenge. Eliminating the school clock has allowed us both to pay better attention to our body’s needs in the morning and throughout the day.

I know homeschooling may not be an option for every family, as was the case for us when I was promoted to a full time position years ago. It became challenging to balance both of our health needs and career responsibilities, in addition to educating Landon. If you are considering homeschooling for health reasons, whether for your own or your child’s wellbeing, know that there are no right or wrong choices; you know your family better than anyone. You can feel if something isn’t right or working for your child. That same intuition can be helpful when considering homeschooling, implementing a 504 plan, utilizing tutoring services and other resources available in providing the optimal learning experiences for your little zebra.