Apparently i’ve not been blathering enough…
He’s kind of back in school 5 days a week now (with no PE), but he hasn’t quite managed it yet in practice – he had tonsillitis which knocked him for six for about 3 weeks, then he got over that, and got a cold… but on the whole he’s doing good.
He didn’t get in to the High School he really REALLY wanted, and that crushed him a bit… but he’s more up than down, and when I think how far we’ve come since this time last year he is a bit amazing.
He still has trouble in the evenings and early mornings, but his occupational therapist suggested some evening coping strategies which seem to work well – and thankfully once he’s asleep he’s mostly good for the night. He doesn’t tend to get to sleep till gone 10 – often it’s nearer 11 – and this has an obvious knock-on effect on his energy and pain the next day. If he does wake, it’s sleeplessness, not pain, that keeps him awake, so he’s pretty good at flicking on a lamp and reading for half an hour til sleep comes again. A gazillion miles away form this time last year when he was up and sobbing in pain I cold do nothing for 2 or 3 times a night.
In the mornings its a case of murmured sympathy whilst immediately filling him with food – how he feels is closely related to his blood sugar levels, and a bowl of porridge and sticking to routine just keep him moving till he starts to feel less sick and painful and more human; by the time we are in the car headed to school he’s fine.
On the upside he’s pretty stoic about the whole thing, is able to joke about it, and generally just gets on with it, really – the whole thing has made him mature way beyond himself in so many ways. All he needs is a ready supply of gentle affection when he’s feeling rotten, and a quiet retreat to his room to recharge for a bit.
We did re-decorate his room recently, and that has made a HUGE difference. In an ideal world he wouldn’t use his bedroom for anything other than sleeping (all about teaching the brain triggers for sleep), but as that’s impractical he has clearly defined ‘zones’ now, and that really seems to have helped.
On the whole he’s oodles better, still not right, but my guess is that it will be another year or so before he’s entirely back to where a ‘normal’ boy his age should be.