Home schooling with EB

Many families around the country are currently faced with the task of managing home-schooling, but what does this look like for an EB family? DEBRA Member and Trustee Carly has shared her experience of the ‘new normal’ and some tips for getting through the home-school day. 

"Home-schooling has meant that I am now constantly juggling four roles: Mum, Worker, Carer and Teacher. Our daughter has EB Simplex which means there are also extra things to consider. As the weather gets warmer the heat affects her EB, we might have to use the wheelchair during daily exercise, and there is the increased risk of blisters on her hands from holding a pen for too long."

"Like other families, adjusting to home-schooling has been tricky. The children can’t see their friends and it can be difficult to motivate them to work independently. Our two children are at primary level so there are no virtual lessons here – it’s up to Mum and Dad! The school has been great at providing guidance, but we need to keep them engaged while we try and complete our own workloads."

"Our plan of action has been to split the topics between us; I have the ‘boring’ subjects of Maths and English and Dad has the fun ones like Geography, Science and Art. English links to my job as an Editor and they really enjoy creative writing, but Maths is definitely not a favourite in our house! In Science, we’ve tried to add fun to the day with some exciting experiments such as using oil and glitter to show how a virus can spread."

Top Tips

  • Keep to a routine: we have home-schooled lessons from 9:00 – 3:30 the same as if they were going to school on a normal day. 
  • Get the grandparents involved: using Zoom, other family members can supervise and contribute to lessons to give you time to do your own work or other jobs. Last week Nanny and Grandad were a great help getting involved in an English lesson debate about zoos.
  • See this as an opportunity: Home schooling has really allowed me to see where there are gaps in their learning, what subjects they are struggling with and where they need a bit more guided learning.  

We know that managing home-schooling is not easy as the situation is different for every family. We all need to do what is right for us and there is no right or wrong way to approach our 'new normal'. Your child's school should be able to provide additional support with home-schooling if required. 

Thank you to Carly and family for sharing your experiences.