I’ve posted before regarding school. I knew it was a very emotive issue in our house but I was overwhelmed by the passionate responses from other people. My children have Charcot Marie Tooth disease (CMT) as well as Ehlers-Danlos syndrome (EDS) but the ripples were felt far wider in the EDS community, I’m guessing due to the lack of understanding and the invisibility that EDS courts.
When I first thought about writing this I asked myself; What would I do differently regarding my children’s schooling if I had my time again? What would I go back and tell myself if I was given the chance?