Our children have EDS, too, which complicates their schooling

My husband and I are navigating uncharted waters with our large family. As many of you know, I have hypermobile Ehlers-Danlos syndrome (EDS) and several comorbidities I’ve discussed in previous columns. What most of the world doesn’t know is that more than half of our children also live with EDS, which they likely inherited from me.

While I’ve learned quite a bit about navigating my own health issues over the years, helping our children through theirs is not for the faint of heart. We’re constantly trying to balance their medical needs with school, sports, and daily life, while helping the people in their lives understand how EDS affects them, and it can be pretty stressful at times.

All of our children are school-age now, and luckily for us, I homeschooled our older kids for much of their elementary years because my husband’s vocation took us all across the country. That turned out to be a blessing in disguise. When health issues arose, we could manage specialist appointments, hospital stays, and recovery without disrupting their education. We simply worked around school based on what was going on medically.

As the years passed, we put down roots and enrolled our kids in local schools. It’s been exciting to watch them excel academically, build friendships, and try different sports. Unfortunately, as the physical demands increased, so did the EDS-related health complications and school absences. Our kids seem healthy and “normal,” if you will, but that doesn’t necessarily tell the whole story of what they’re dealing with on the inside.

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We got our first real taste of educational accommodations a few years ago when one of our girls experienced a prolonged recovery from a brain injury, thanks to our fragile connective tissue. What we thought would be a straightforward recovery became a rigorous journey involving many specialists, therapies, part-time homeschooling, and school accommodations. It took a good year to figure out what her body could handle, how much school was too much, and how to keep her education on track. Thankfully, she’s regained much of what she’d lost, although being a wonderful student and athlete still takes a toll.

As it turns out, we weren’t done navigating school challenges, now with our younger daughter, who’s had her fair share of medical issues ever since she was in my tummy. She’s a fighter and a survivor, though, and after everything we’ve been through together, Mama’s ready for the next adventure in this EDS saga.

This little girl loves school, learning, and her friends, but lately, making it through a full week of school has become challenging. Between joint and muscle pain, fatigue, and other EDS-related issues, her body is worn down by midweek. We’re working with her doctors and school to create a modified schedule so she can keep learning without pushing her body to the point that she needs additional days off to recover or ends up becoming ill.

Our kids love being active, but EDS makes them more prone to bruising, sprains, joint injuries, and exhaustion after physical activity. As parents, we’re constantly trying to figure out when to encourage them to keep going and when to slow down and rest. We don’t want them growing up thinking that having EDS means they can’t do things, but we also have to recognize that their bodies don’t always handle things the same way other kids’ bodies do. It’s a tricky, ever-changing balance.

Thankfully, staff members at our schools have been so caring and accommodating as we continue figuring out what works best for our kiddos. Now, as another season of illnesses makes the rounds through the schools, we’re facing another challenge. What might be a common bug for any other child can be a much bigger ordeal for ours, requiring more care and time to recover. So, between trying to keep everyone healthy, making it to appointments, and keeping up with schoolwork and attendance, it can be a lot. We’re doing our best, but goodness, some weeks that’s easier said than done.

I think some of the best questions we can ask ourselves as parents in this situation are: How do we help our children understand that they’re uniquely created and may need to do things differently without making them feel different from their peers? How do we teach our kids to recognize their limits while encouraging them to be confident, independent, and willing to try new things? We want them to live lives full of memories, sports, friendships, perseverance, gratitude, and mental positivity through the struggles. Their health and well-being will always be our top priority, and we want them to enjoy childhood, too.

I certainly don’t have all the answers, but if sharing our experience helps another EDS parent feel less alone, it’s worth telling.

Note: Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ehlers-Danlos News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.