A Guide for Family Caregivers of Loved Ones with Rare Diseases
Managing with Schools
by Toni Mathieson
Our daughter attended a Special School for children with profound and multiple learning difficulties. We did a lot of research before deciding on a school – it was difficult to navigate the realm of Special Educational Needs too, and also to secure a Statement of Special Needs that would outline my daughters care requirements.
We finally chose the school for its holistic approach to education – therapies were very much part of the curriculum. She was able to access hydrotherapy, rebound therapy and sound therapy whilst at school, as well as physiotherapy sessions and speech and language therapy. It was very hard for me to let her go to school at all and I have to admit to considering home schooling, as I was convinced that no-one could care for her as I did and it was hard to let her out of my sight!
The teaching and support staff were wonderful – our daughter enjoyed one-to-one care with a nurse on hand in case of any medical emergencies. This was a great comfort, as by this time she was experiencing seizures and receiving nutrition via a PEG. As the school also had an open access policy, meaning parents could ‘drop in’ at any time to check on their child, this helped to put my mind at rest. However I soon learned that this was unnecessary – it was apparent from her smiles that she enjoyed school and being with other children very much.