What To Tell School About Your Child’s EDS

We get a lot of email about the challenge of dealing with schools. I know from experience it can be a bit complicated. Teachers have bigger classes and ever increasing pressures. To help work out the best approach we’ve invited Michelle O’Sullivan, Occupational Therapist from HypermobilO-T to share her thoughts on what to tell schools if your child has EDS. Maybe you have some school experiences you’d like to share. You can join in this discussion by sending in a comment at the end of Michelle’s post. We’d love to hear from you.

Do you tell them everything and let them wrap your child in cotton wool? Or do you tell them the bare minimum so your child fits in with their peers?

This is tricky for any parent of a child with a chronic illness or disability. How much information is enough? How much is too much?

As an Occupational Therapist specialising in hypermobility conditions, including Ehlers Danlos Syndrome (EDS), and as an adult living with EDS hypermobility type, I know there is fine line between too much and not enough information.

Here are some thoughts on what you should tell your child’s school:

School needs to know that your child has a chronic condition. Make sure they understand that your child will have good days and bad days, or even good weeks and bad weeks, but it is a lifelong condition.

Specifics of information will vary between types of EDS:

Vascular Type – you are going to want to tell them everything.

    1. They need to know what signs/symptoms to look out for.
    2. You need a Medical Action Plan. Do they call you or an ambulance? This will depend on the severity of the symptoms your child is experiencing and advice from your doctors.
    3. They need to know what activities your child should avoid and which ones are OK for them to participate in.
    4. They need to know about any medications that need to be taken while at school including pain medication (this usually will be administered by the school nurse or other trained staff member). Talk to your school about their policies on this.

Hypermobility, Classical and other types of EDS:

    1. You need to talk to them about the possibility of dislocations and subluxations and their possible signs and symptoms.
    2. You need a Medical Action Plan. When do they call you versus an ambulance?
    3. Tell them what sports have been recommended; what sports have been banned (usually contact sports). Talk about what your child will do when they are “sitting on the sideline” – could they go to the library? Or read a book? Have a rest?
    4. They need to know that your child is likely to get far more tired, and tire more quickly than their peers. Rests are needed to help with pacing. Where is the appropriate place for your child to rest while at school?
    5. Handwriting may be difficult due to instability in finger, wrist, elbow and shoulder joints. Their writing is likely to be slower and messier than other children. They may actually experience pain when writing and this is very real. It is unlikely that they are “putting it on” to avoid doing work.
    6. They need to know about any medications that need to be taken while at school including pain medication (this usually will be administered by the school nurse or other trained staff member). Talk to your school about their policies on this.

Academic Considerations

Your child may have trouble keeping up with the work load expected; what would you like to see happen?

    Do you want to finish the work at home on weekends?
    Would you prefer your child to be given less work than other children?
    Would you prefer your child to be given the same amount of work but without expectation that it will be completed?

High School
In high school when examinations are timed, your child might benefit from extra time for tests and for external examinations, may require rest breaks, a scribe and or use of a computer. This will need to be applied for through the school and often an Occupational Therapist will do a handwriting assessment to help with the application.

Also for high school students, carrying heavy bags of books to and from school can be problematic. Talk about ways this can be avoided. For example a second set of books my be kept at the school.

School Camps

This can be a really difficult situation, and can be stressful both for your child and for you. Being away from home is hard for some kids without chronic conditions. Depending on your child’s support needs, they may still be able to go on camp, however extra information may be needed regarding things which usually happen at home.

It is important for children to feel included by their peers, and going to camp is definitely a fun experience for most children. However, I’m sure you would agree that the health and safety of your child comes first, and that includes their mental health.

If camp is going to be too anxiety-provoking for your child because of their condition, then perhaps the negative outweighs the positive. Being away from their primary carer (you) can be very scary for a child who isn’t yet able to manage their own condition.

Occupational Therapy

Paediatric Occupational Therapists are able to visit your child in their classroom environment. This is helpful for the child and the teacher so that the child is set up in the best way for them to learn.

The chair your child sits on during the 6 hours they are at school each day is really important, as is the height of their desk, their writing implements, and position in the classroom. If you think your child might need an OT assessment, talk to your school about the possibility. If you need to find an OT, try searching for Occupational Therapy Australia. In Sydney, you can contact me at www.hypermobilot.com.au.

This information should only be used in consultation with your healthcare team. This does not take the place of, or precedence over, personalised medical advice. I hope this has been helpful. You might have some good strategies to add to this post. Please feel free to comment with anything else you feel might be helpful.

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