Living with Ehlers-Danlos Syndrome (EDS) as a high school student can be especially challenging. The normal struggle of balancing academics, extracurriculars, and social life, all while trying to figure out who you are as a person, is overwhelming for most teenagers and is made more complicated when having to manage a chronic illness. Many times, accommodations in the school setting can be extremely helpful. Sometimes, however, the standard accommodations are not enough, and attending school in a traditional manner, if at all, is not possible.
In Part One of this three-piece series, we will look into how to plan ahead for the possibility that you may be unable to attend school frequently or at all. Due to the unpredictability of EDS, it’s worthwhile to think ahead about the possibility of a severe health setback occurring and to become proactive in developing a plan that allows you to live your best life within that situation.
In Part Two, we will meet two high schoolers, Amicie and Lily, who share their struggles and triumphs living with EDS. Part Three will explore more in-depth how to think and work outside of the box to have your educational needs met.
“Because I felt like I’d never be that person until I was, I was unprepared and overwhelmed.”
– Amy Ratner, mother of a teen with Ehlers-Danlos Syndrome
1. PLAN AHEAD
I spoke with several students and their parents in this situation and asked how they were coping. All the families stressed how important it was to plan ahead for the possibility, as it can be quite challenging to deal with in crisis mode.
After Amy’s daughter experienced a significant health setback the summer before her junior year, she was stunned to learn there was no formal school policy in place to deal with chronically ill students: “We had to go to the school and say, ‘What can we do here?’ As a private French school, there aren’t as many options as you may find in public schools.”
For students in public schools, putting together a 504 plan which takes into account both current necessary accommodations and also what may be needed in case of a major pain flare, surgery, or other worsening health situation, is crucial.
In the United States, Federal law requires “specially designed instruction, at no cost to the parents, to meet the unique needs of a child with a disability, including instruction conducted in the classroom, in the home, in hospitals and institutions, and in other settings […]” While states vary in what triggers the availability of these homebound services, many times they are an excellent option for those experiencing complex health issues. While these services are sometimes difficult to obtain, they are available.
2. ASK FOR HELP & GATHER A TEAM
Nicole Schaffer, a mother of a teen with Ehlers-Danlos syndrome, shared, “When my daughter’s health quickly plummeted, it was the guidance counselor at her school who told me to put an emergency 504 in place. I didn’t know this existed. We were very fortunate to have the support of staff at her school. They knew I was about to have surgery myself, and they cared about my daughter’s well-being.”
Don’t expect to do this all alone! You will need to put together a support team. This team should consist of any relevant people at your children’s schools, health care providers, family members, your children’s friends, and their parents.
These steps might be helpful:
- First, find out who the point people are at the schools.
- Then, ask your teen, “Which teacher/staff member do you trust the most? Can you speak with that person?”
- Create a list of people, including:
- Teacher;
- The school’s parent coordinator;
- The guidance counselor or the dean for that school/grade;
- The 504/IEP coordinator or special education coordinator;
- One primary pediatric doctor and proper documentation;
- Friends in the community; (Ask yourself: How can you elicit help from close friends? The parents of your teen’s friends – those you and they trust — on sports teams and other extracurricular activities).
All of these people play a part in helping manage the bigger picture of poor health. They can assist with not only developing an academic plan but providing equally important social support as well.
3. BE FLEXIBLE
Nicole also stressed, “The academic path doesn’t have to be the same for everyone.” It’s essential to be realistic with your teen and also validate their experience at the same time. You need to reassure them that they can choose a different route, but also don’t minimize their feelings related to being forced to consider an alternate path. It’s easy to say that as an adult while it might feel like the end of their world to them.”
Facing a severe health setback as a teen may mean having to get creative and step outside the box we call societal norms. It may take longer for you to finish your education, and you may end up pursuing alternative education or career opportunities. The traditional path is not for everyone, and staying open-minded and realizing you can still lead a fulfilling life is very important.
4. SELF CARE
The stress of dealing with all of this can sometimes feel overwhelming. It’s important to realize that you are just as important as your education and body. Make sure to schedule time with friends and indulge yourself in your passions and hobbies when you can. Don’t minimize your “me-time” and its positive effect on your health overall. In fact, sometimes, these hobbies and passions can lead to rewarding and fulfilling careers!
Stay tuned to hear from Amicie and Lily for further ideas on planning and coping.
You might also want to read:
Unaccommodating Accommodations
Crystal Sullivan
March 2023