As a mother of three children living with Ehlers-Danlos syndrome, the start of a new school year has always brought a certain amount of anxiety. While many of my mom friends and their kids were shopping for new clothes and school supplies, excited about the possibilities of a fresh start, my back-to-school “to-do” list often looked a bit different. 

It included extensive checklists, updating notes and medical information for 504 plans, and scheduling conversations with the school nurse and teachers. The new school year also came with a long list of unknowns that couldn’t be checked off quite so easily: 

• Will my kids’ medical issues allow them to attend school and keep up? 
• How many hospitalizations will we be dealing with this year? 
• Will their teachers understand and support them? 
• Will they keep friends? 
• And of course, will they learn and have a chance to excel?

For kids living with EDS, academics can be more challenging when physical pain, fatigue, and health issues interfere. Perhaps we need to revise the checklist and redefine the goals for what makes a successful school year.

Educational needs can look very different for children living with the uncertainty of medical issues. This is a reality many struggle to accept. Symptoms vary, and the road to graduation may not always be a straight line. Sometimes success can be measured by good grades and keeping up with classmates. Other years, it could be homebound learning, trying to maintain friendships, and simply trying to make it through a surgery or medical flare without losing hope or feeling too overwhelmed after falling so far behind academically.

Support and accommodations are absolutely needed. However, dynamic disability and invisible illness are not often well supported in the organized structure of education. Public schools around the world are being asked to implement an ever-growing number of individualized plans without necessarily receiving the much-needed increases in staffing, training, or resources to fulfill them. It is little wonder that children do not always receive services, even when those services are outlined in a 504 plan or Individualized Education Program (IEP) (in the US) and drafted with the best intentions. 

What Can Parents Do? 

A lot! A 2026 study, The Experiences of Youth With Disabilities In Accessing Supports Under Section 504, interviewed 20 students aged 12–18, examining the development of their 504 plans and whether accommodations were provided. Students reported that they were often not meaningfully included in determining their eligibility or developing their plans. This means that parental advocacy, knowledge, and involvement in 504 plans are often paramount to their success. The study also found that students with invisible disabilities often had to remind teachers of their accommodations and described the emotional toll of dealing with educators who were unwilling to support or follow their educational plans. This study is admittedly small, but it validates that compliance is sometimes lacking and that parental advocacy can improve educational access and outcomes.   

So, What Are Some Ways to Improve Your Chances for Success? 

1. Identify Resources for Information, Guidance and Support

Look locally for special education nonprofits that can provide valuable resources to help you develop a supportive plan for your child. Many offer paid educational advocates who can attend meetings, manage documentation, and identify inclusive opportunities you may not have considered, such as after-school support or peer-to-peer social clubs. 

2. Educate and Communicate 

Aim to build partnerships with your child’s teachers before problems arise. Ask to meet early in the school year or establish communication via email. Providing information about your child’s condition can help to create more understanding, but don’t assume that teachers will know the impact that symptoms have on your child. It is one thing to say, “my child has pain and fatigue” and another to say, “my child’s pain and fatigue often increase after exertion, and he may need permission to stay inside and rest during recess,” or “handwriting may be more problematic as the day wears on.”  It may also be helpful to ask your child’s teacher for any ideas on how they would like to manage the plan. Ask how they prefer to handle makeup work or provide learning check-ins that don’t make your child feel singled out. One useful resource is the Signs That Your Student May Be Struggling With EDS, a brochure for educators created by the Norris Lab. This can be printed to help raise awareness around your school. 

3. Establish Social and Emotional Access as a Need

There is a growing recognition of the potential overlap between EDS/HSD and neurodivergence, including autism and ADHD. For some kids, sensory sensitivities, mast cell reactions, social communication skills, anxiety, pain, and fatigue can add another layer to the physical challenges of EDS. It is OK to ask people to check in and see how your child is doing socially at lunch, recess, or during unstructured times. Don’t be afraid to express concerns over isolation or bullying if you feel your child may be having trouble with social connections. Ask for suggestions to help encourage friendships outside of school.

4. Help Your Child Fit In

Recognize that your child’s rights to an education include academics as well as the experience. At the end of the day, most kids just want to fit in. Home discussions can provide great opportunities to build your child’s confidence to self-advocate, as well as to remind them that not all health challenges need to be shared. While school staff need information in order to keep them safe or provide accommodations, your child does not have to share personal medical details with others. If a child requires mobility aids or has a visible disability, ask them what would make them feel most comfortable at school. Sometimes their answers might surprise you. 

In elementary school, my son’s Complex Regional Pain Syndrome would make it quite painful anytime someone bumped against his wheelchair. We talked at length about how it might be helpful for the teachers to explain this to other students, and could help create more caution around him. While that may sound like a safe and reasonable approach, at 11 years old, his desire to fit in with his classmates was so strong that he shared he did not want to do anything that might make other students treat him differently or hesitate to come close to him. His need to fit in socially was his driving priority at that time. The worried mother in me wanted to put as many supportive and preventative measures in place for him that I could, but the conversation allowed me to understand that what he really needed in that moment was the autonomy to have some control about how much of his medical condition we share with his peers.  

Further Resources

If your child is starting school and you are looking for more information about educational support including 504 plans and IEPs, please check out our resources:

The EDS Back-to-School Advocacy Toolkit

EDS Back to School Special – Prep for K-12, College & Accommodations

We wish you a great start to the school year and hope that all our EDS students have the support they need to learn, belong, and become who they are capable of becoming. 

That is a checklist I feel all kids deserve. 

DM Sullivan, Author
Producer, Complicated 
Founder & Executive Director, Elevate Rare
Sept, 2026