Essential resources for parents of children with EDS

Estimated reading time: 9 minutesParents raising a child living with Ehlers-Danlos Syndrome have the same goals as any parent: to see their child grow and thrive at home, at school, and in the community, connecting with others and pursuing their passions. Learning how to achieve these goals in the context of managing chronic symptoms that are experienced with EDS takes extra support and adaptation, and there are resources available to guide parents through the process.

To provide practical, expert-backed strategies, I asked Laura Frégeau, an occupational therapist (OT), to share her insights on sensory tools, environmental modifications, and activity adaptations that can help children with EDS thrive.

In this blog, Laura shares her professional expertise and her own experiences to offer simple, effective ways to create a more supportive and accessible daily experience for your child.

EDS in Children

Ehlers-Danlos Syndrome is a group of lifelong conditions – meaning they are present throughout childhood even though it may not always be obvious.

When hypermobility is the only presenting feature, and in the absence of features that might indicate the rarer forms of EDS, it can pose a significant diagnostic challenge in young children where hypermobility is common at that stage of development. For more information about EDS in children, please see this blog.

In this space, we are going to be putting the focus on parenting resources for children with EDS/HSD, including those with generalized or symptomatic joint hypermobility.

I feel very lucky to be parenting in a time when I have these resources at my fingertips! They have helped to prepare me to support my children (with symptomatic and asymptomatic hypermobility) across the different environments they interact with on a daily basis.

Sensory friendly tools and strategies

Living with hypermobility often involves sensory processing differences with and without common co-occurring conditions like autism or dyspraxia. This places sensory friendly tools and strategies at the forefront of our parental tool kit!

Sensory processing differences come in all shapes and sizes, even for a single child on a single day! Those differences have to do with the matching of the bodily response to the sensory input.

If we use the example of footwear, many kiddos without sensory differences can tolerate different materials in their socks, small seams, different types of socks and shoes in their wardrobe, and feel comfortable throughout the day.

A child who has heightened sensory sensitivity can require a specific material for their socks, for all socks to be the same in their wardrobe, or for shoes to have no irritating seams or other discomforts in order to be able to feel comfortable. A child who has reduced sensory sensitivity and is seeking input may prefer to wear shoes that are tied or velcroed very tightly in order to feel comfortable.

For sensitivities like light, sound, or movement (vestibular), a child may need both a soothing environment when feeling increased sensitivity and an activating environment when feeling reduced sensitivity.

In order to create a sensory friendly environment for your child, there are a number of tools that can help dial up and dial down sensory input, as well as strategies to help the body cope when it is hard to match the sensory needs with the environment.

For specific recommendations that match your child’s unique profile, you can consult with an Occupational Therapist for a sensory evaluation and tailor made recommendations for your child’s body and the specific environments they interact with daily.

Strategies for home

Here is an example of some of the sensory strategies we use at home for both myself, as a neurodivergent parent with HSD, and my children.

• We have kitchen chairs that have adaptable heights for a seat and a footrest so that they can stay at the right height to have their knees and elbows at a 90-degree angle to eat. Having this solid base of support has helped them to have less movement seeking sensory behaviour at the table because they don’t feel off balance. There is a balance board on the floor in front of my chair so that I get the sensory input I’m seeking without sitting on my legs.
• We have “chewelry” around the house, so that when I see my kiddos are self-soothing by chewing on toys or clothes, I can redirect them by saying “I see you need to chew, can I get you your chewy lego necklace?” My kids experience a calming sensation from chewing, so we keep specific tools in their environment that they can safely chew, made of solid silicone, so that they are not just chewing on what is available or in their hands (like my poor chewed up pencils and pen caps in elementary school).
• We have sensory bins available for calming play with different textures and items to explore. As a parent with my own flare days where I manage a lot of symptoms, these sensory bins have been essential to entertain the kids safely for longer periods of time when I need rest. I set the kids up at the table with an array of bins they can explore, put on some music or a TV show, and bring my portable recliner into the kitchen to have a lie down while they play. These sensory bins are often very quiet play as well for when I am sound sensitive.

Strategies for school

At school, sensory accommodations are becoming more and more available for all students. Here are some examples:

• Ear protection has been a part of adapting the sensory environment at school. We use a combination of in ear noise cancellation and over the ear noise cancelling headsets. These should be available at the discretion of the child, some may prefer to wear them during chaotic transitions like going down to the lunchroom in loud halls. Others may like to wear them in quiet moments when they are sensitive to subtle noises like buzzing lights or the noise of the music room down the hall.
• While the same principles described above for supportive seating still apply, dynamic seating can be a good way to get movement in during class time while meeting the expectations of staying in your seat. Options include tools like stretchy bands across the legs of a chair to bounce your feet on, a sit fit or wobble cushion, a chair that allows some rocking, or an exercise ball.
• Quiet rooms or relaxation spaces can be essential for children who experience sensory overwhelm at school. These rooms are best used as a regularly practiced, preventative strategy to avoid sensory overwhelm. This means working with students to identify when they begin to feel the first signs of sensory distress and establishing a routine for them to request access to sensory friendly spaces.

Adapting physical activities to support your child

Physical activity is a must to support connective tissues! For children who have motor skills that are developing outside of what is expected for their age range, being mindful about the types of activities they are enrolled in can help to set them up for success.

Swimming can be a good option as the water provides gentle resistance and support for joints. Another option can include multi-age activities where there will be a wider variety of skill and developmental levels among the children as they play together.

Multi-sport activities where the children engage in a different sport every week can also be beneficial. While such activities keep them active and moving, it is more about exploring the different skills in different sports than refining skills in a single sport.

In terms of endurance and pacing, engaging in SOME fun movement is more important than strictly adhering to a practice schedule; so if your child is done with after 30 minutes of a 45 minute activity, you can encourage them to stay engaged and cheer on their friends, but allow them to rest their bodies and respond to their cues of fatigue.

The focus is on keeping the movement based activity fun and safe so that they keep wanting to come back week after week! Endurance, like sensory needs, is very dynamic and can change from one week to the next. 

Injury prevention tips for active children

Many children with hypermobility may have advantages in certain sports and choose to specialize in something like Volleyball (hypermobile shoulders can hit a mean serve), Dance, or Gymnastics. Restrictions for sports depend on the type of EDS and the co-occurring conditions that a specific child is managing, and as such should be considered on an individual basis. 

Creating habits like “pain check-ins”, regularly taking breaks, and engaging in warmup and cool down activities can all help to ensure that a highly motivated young athlete is keeping injury prevention in mind.

It may be helpful to set up a relationship with an athletic therapist for both injury prevention and to address any injuries that may arise. Proper rehabilitation for injuries and an understanding that hypermobility is often associated with a slower recovery are very important before returning to sport and should be discussed with the coach/trainer at the start of each season.

Building social confidence and friendships

Some of the topics we’ve touched on above can paint a picture of why children with EDS/HSD may need support in building social confidence and making friends.

When engaging in sport with friends with sensory processing differences, it can sometimes mean bringing too much energy and strength to components of the game – the soccer player who always accidentally boots the ball over the fence.

Motor developmental delays may mean finding a just-right level of competition within their peer group can be challenging. There are ways to set up for social success that allow your child to be their full selves, from which they can build confidence and connections.

I like to encourage finding environments or activities that match a child’s strengths, where they might have the opportunity to be a leader. I know of an example of a child who finds a classroom very overwhelming and is a fantastic reader. So, on his sensory breaks, he goes to read to younger students.

If school is an integrated environment, or within the “mainstream” system, consider seeking out community activities or sports for children with chronic illness, neurodiversity, or sensory differences. There may be robotics clubs at the local library, or Lego themed day camps, or Dungeons and Dragons clubs to work on teamwork outside of sports based activities.

Finding local support groups that host group outings or gatherings can be a good place to learn about resources from other families and introduce your child to children who may share some of their experiences.

I like to remember that friendship looks different for everyone. Some people have a large group of friends, others bounce between friend groups, others have one or two close friends. It can sometimes take time for these friendships to develop, especially outside of the environments where the groups of kids typically interact.

I was lucky to have a parent of older children soothe my worry when my child wasn’t playing with his peers at a young age, she let me know the friendships will develop in time. Sure enough, now in later elementary school, my child has strong social connections and friends he can talk to about his “bendy body”.

Managing school attendance and energy effectively

School attendance accommodations should be handled with care for any child who experiences a chronic condition. Children with hypermobility may miss school for typical reasons of frequent acute childhood infections, flare ups of chronic symptoms, and frequent medical and therapy appointments.

Some school districts will have an accommodation “code” for children with medical conditions where there is a standard protocol laid out for what support will be offered and by whom. Different countries, states/provinces, and districts will have protocols that vary. Reach out to your district to find out what types of accommodations are available, and what is needed to qualify for these (evaluations, doctor’s notes, etc.).

For frequent absences, a plan for communication can be put in place with the teachers and administration for how to keep up with missed content and evaluations.

Pacing and energy management at school can be very challenging and is often considered on an individual basis. Some accommodations may be to provide tools that would require less energy than the level expected for the class; an example could be typing over handwriting (once a child has learned how to type effectively).

When there are many repetitions of practicing a new lesson that are assigned on a worksheet, sometimes the load can be reduced by completing every other question on the worksheet and only revisiting the concepts that are the most challenging for more repetition. Evaluations in certain topics (history, science) can be done orally to save the energy of writing.

As children get older, they may need to access their management toolbox at school to be able to stay in class when managing mild to moderate symptoms. Some examples to set up with stage would be to speak with your school administration about access to microwaves for heating pads, what paperwork is involved in having access to pain medication during the school day, if they can have access to the washroom without having to ask for permission each time.

Recommended organizations and online toolkits for parents

The School Toolkit is a great resource that was developed by The Ehlers-Danlos Support UK and The Hypermobility Syndromes Association both of which are great resources. The content is led by Jane Green, MA Ed. / AHT, Educationalist. Jeannie interviewed Jane Green on her podcast.

The Ehlers-Danlos Society is also a great resource with a provider directory and virtual support groups, including support groups for Parents and Teens. The Ehlers-Danlos also offers programming for kids and teens during their annual Global Learning Conferences through the Junior Zebras Program. They have also previously offered a free family camp.

For those with Vascular EDS, vEDS Movement offers virtual support groups for parents and teens.

We also have a subgroup in The Zebra Club app for parents – both parents with symptomatic hypermobility and those who have kids with symptomatic hypermobility.

FAQ

What are the best ways to create a sensory-friendly environment at home?

Keep a journal of your child’s sensory needs, including the sensations they seek and the sensations they avoid. From there, you can create a plan to safely and effectively seek sensory stimulation that matches the environment (e.g., dynamic seating in the classroom) and how to adapt to sensory stimulation that is distressing (e.g., noise protection for sound sensitivity)

How can schools support children with EDS?

Schools can support children with EDS in the same way that they do other medical conditions. By listening to the parents as an expert on their child’s needs, starting and keeping up with a regular communication schedule to discuss successes, challenges and keep track of missed work and by adhering to their local school districts policies on accommodating children with medical conditions (e.g. 404 plan or Individualized Education Plan that details your child’s supports and adaptations)

Are there any support groups for parents of children with EDS?

The Ehlers-Danlos Society offers virtual support groups for parents. The vEDS Movement also offers virtual support groups for parents of children with vascular EDS.

Laura Frégeau

Laura Frégeau is an Occupational Therapist and PhD student living in Montreal, Canada with her family. She had a pediatric OT practice supporting children with developmental delays before shifting her practice to telehealth for chronic illness management in her province in 2023. She lives in a mixed-ability and neurodiverse household where they use adaptive tools and strategies every day to manage symptoms and stay engaged in the activities that are important to them.

You do not have any posts.