A mix of emotions accompanies the end of summer and return to school, from anxiety to relief. Whether it’s exam year or the beginning of their school career, advocating for your child will help them to reach their full potential.
As a new school year looms, some children and young people are eager to get back into a routine while others find the return quite daunting.
Whether it’s the beginning of your child’s school career or an important exam year, it’s important to advocate for them and ensure they have access to all the help and support they need within school so they can flourish and reach their full potential, while having lots of fun along the way!
Advocating for your child
- Ensure that your child’s school are aware of their condition:
o As soon as you receive a diagnosis speak to school and find out who you need to communicate with, this can range from Class Teacher, Special Educational Needs Lead, Diversity and Inclusion Lead
- The Marfan Trust ‘Guide for Schools and Colleges’ is a great resource for you and the school, full of useful information about Marfan syndrome and the different ways it might affect individuals. Download your copy here or contact us via [email protected] if you would like hard copies to take into school.
- Marfan syndrome is a rare condition so you may become the ‘school expert’
- At the Marfan Trust we are happy to help with your journey towards getting the support your child might need, we can:
o Write letters of support to school in relation to adaptations that might be required, from new classroom furniture to modified PE lessons to extra time in exams
o Arrange talks for staff members about Marfan syndrome
o Provide a listening ear to work through issues or problems
o Provide peer support for you or your child (children can find it invaluable to speak to someone in the same position as them, the rarity of a Marfan diagnosis can make it isolating)
o Monthly parents drop in to talk with other people dealing with similar issues
Please do get in touch if there is anything you need, we are eager to ensure all children with Marfan syndrome have the support they need to thrive at school.
