If you are a parent of a child who is developmentally delayed or has medical issues and you don’t yet have a diagnosis, the very best place you can start is with SWAN UK. This charity provides information, advice and peer support for families with undiagnosed children.
It is through other SWAN parents that I have not only made wonderful friendships, but have found out all the essential things I need to know, such as what an Education Health and Social Care plan is, how to get onto medical academic studies to try and find a diagnosis, what questions to ask doctors, what to do when my son has a seizure and stops breathing and I think I can no longer cope with life, and how to get respite care for my son.
Honestly it has been a lifeline!
Sign up, and pile into the secret Facebook group, and your life will be just so much better, I promise x