Just spoken to sons nurse about a review meeting date (internal update one, not the dreaded Social Services one.) Asked how he was - fine, well - asleep. He does a lot of this.
His sleep pattern is fairly well 'to cock' much of the time. Some of it is due to his epilepsy medication - it's a fine line between keeping down the number of fits he has and not sedating him so much that he hasn't a life. Some is due to boredom - if he's not interested in something he tends to 'switch off' - this can grade from just closing his eyes all the way to 'aggressive sleeping' where he's effectively comatose and unresponsive. His internal clock doesn't seem to work well either - he can sleep 48 hours or more, or be awake 48 hours with no apparent ill effects. All this tends to put him a bit out of sync with the rest of the world.
Result can be we take him to an event or he has a driver booked for the afternoon, and he sleeps right through it - we've given away a surprising number of tickets on this basis. At the other end, he'll happily stay awake all night and need 'entertaining' etc. when nothing has been planned for him. I suppose it's a bit like having an extreme version of teenager - itis. More practically, getting the right amount of feed and fluids in and ensuring his bowels stay reasonably regular can become problematic.
It can get tiring and frustrating, but it's part of who he is.
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