Gosh it takes me back reading this thread... mine being so much older now, so thank you for the memories
Helen that was a brilliant post. Claire, I am so pleased you are getting support here for all of this, I think the pressure on making the right decisions for a child with hms is hard, particularly with the physio demands and expectations. Some kids as they get a little older learn what is right for them but at this age its difficult isn't it, to find the right way, not to wrap up in cotton wool and also not watch them in pain as a result of too much too soon! Mine at reception, used to get completely exhausted and yet when I look back at my childhood, I was still at nursery and had a sleep in the afternoon at the age they are marching around doing this that and everything else. Helen, you sound like you have found a happy balance and really agree actually about the football. Only a personal opinion but I think their is a great deal of bravado and an expectation that getting hurt is OK, a little more than the normal rough and tumble. I actually found juinor school pretty accomodating, it was when mine started secondary sport became problematical, daughter's physio has still not forgiven PE Teacher making mine do long jump, the impact on her knees, ankles was ridiculous. Fortunately after Year 7 she found her voice and expressed herself I am afraid in no uncertain terms what was and what wasn't achievable for her.
Claire I know the physio is a hard regime, hang on in there and with time I am absolutely sure your little one will reap the benefits, all of you with younger kids are lucky as it WILL help in the long run. When mine were little none of this was available, and as a result I am sure my eldests EDS is worse for it.
I am going away now honest.. but on the trampoline front, next time you go perhaps go armed with games (not currently sure what is the 'in' thing) A good distraction for a while from the trampoline could be a treasure hunt, takes a little while to organise but does provide down time and bonding with older and younger children, helping solve clues etc. Another good thing we used to do when visiting relatives or they came to us was a cardboard box filled with shredded paper and fairly cheap wrapped presents, simply wrapped in newspaper is fine with a big G for a girl and B for boy if appropriate. With colouring books, crayons, a story tape (although these days I expect it would be a dvd or cd). You can include a present for the grown ups too, which includes an activity to do with the children. i:e: read a story, a pack of age appropriate cards to play a game of snap, happy families, etc. You can find that even the most reluctant adult can find themselves doing something they wouldn't ordinarily do! charades etc.. allowing the trampoline but again distraction with other fun stuff may help avoid total exhaustion.
Good luck Claire.
When I look back I can smile now at how much I fretted somedays about what was right and what wasn't but having faith in yourself and your gut feelings on things will help. There are a lot of pushy mums out there to live up to, just ignore what those do and continue to do what is right for your family unit. Here's a round of
going out to all the mum's of HMS/EDS kids, for doing such a fantastic job, bringing up a child with hms is not easy I also agree with Helen, this age when the children are at school and activities are full on, is pretty exhausting for all of the little ones.