My lovely DS is 15 & having a tough time of life atm. He has always had autism & ADHD (along with associated hypermobility, dyspraxia etc), but 3 years ago developed epilepsy as well.
This has been a real life changer for all of us & not in a good way. So many doors closed. One by one, the activities he enjoyed stopped accepting him, saying it is too risky for him or others (if he needs extra care to recover from seizures & it takes away from others or scares them). His cognition is massively affected & his academic age has now been stated at around 8, previously he was 'average'. He has dropped down to 4/5 GCSEs but Special school won't take him as he is capable of those. He has also lost all his friends as they have matured & he has regressed. Even his little brother has overtaken him. As a family, we find life more difficult now as there are very few people who feel confident in caring for him, so weekends away (which we could do when he was 'just' autistic) are no longer a thing for DH & I, for example. Especially at a time when other teens are getting more independent & DS less so.
But now we have found a SEN youth club he attends each week. He is on a day trip with them today, but only after much discussion about whether it was safe to take him. One of the office staff is now going with as an extra in case he has a seizure. He usually has drop (atonic) seizures that are seconds long, but can be 15 minutes or so to be walking & talking normally.
Anyway, when I dropped him off i expressed my gratitude & all was fine. But then it actually made me sad, that I should feel grateful for DS getting the same chance that other DC - even other SEN/disabled DC - take for granted 😢
Sorry for rambling, but I thought if anybody could understand, I would find them here!