The Monitor

Aaron loves knowing what the structure of each of his days will be like.  He’s doing very well with flexibility, though, and that’s great progress for him.  His day group has helped with that as they have some days that are fairly routine, such as going bowling every Monday, a movie every Friday, etc.  Other days are open for the group to decide what to do and so Aaron has learned to be open to change.

Here at home there are some aspects of Aaron’s day that he wants clarified.  Every day.  EVERY day.  Did I make that clear?  These things that Aaron wants to know about and fit into his scheduled day are:   

1.  What’s for supper?
2.  Can we play Skip-Bo?
3.  If not Skip-Bo, can we tickle each other’s backs?
4.  What will the weather be like?

He often begins asking the above questions the night before as I tell him goodnight in his room.  “Mom, tomorrow do you think we can play Skip-Bo or maybe do each other’s backs?”   Or it might be:  “Mom, what’s for supper tomorrow night?”  And/or:  “Mom, is it going to rain tomorrow?  Is it going to be cold?” 

If I’ve told him that I want to watch a movie with him, then he’ll throw that question in as well.  The other day I told him that I’d like to watch Rango with him so now I get that question every day and will until we finally watch it.  At least there’s a little variety in his questioning.

When he returns home from his day group in the late afternoon, he will usually begin immediately telling me about his day.  Soon, though, he’ll announce that he’s going up to his room…………..but before he walks away he’ll begin the questioning.   “Mom, so what’s for supper?”    “Mom, do you think we can play Skip-Bo or do our backs?”    “Is it going to rain tonight?” 

He’ll go upstairs and then soon I’ll hear him thumping down again.  “Mom, you come and get me if you want to play Skip-Bo or maybe do our backs, OK?”    And on and on the evening goes, as he reaffirms the questioning and my responses.  At least he’s getting some good exercise as he lumbers up and down the stairs over and over again.

Since Aaron’s seizures are nocturnal now,  we keep a monitor by our bed at night.  I also usually have it with me in the early mornings before Aaron gets up, just in case he has a seizure before he wakes up.  We’ve heard some pretty humorous things at night, either before he goes to sleep or during his sleep.  Some of his noises are funny…………..some are annoying if they wake us up as we try to go to sleep………and of course the seizures can be alarming in the middle of the night. 

Sometimes Aaron laughs in his sleep.  That’s so funny to us and we always wonder what he’s dreaming about that makes him have that laughter.  At other times Aaron talks in his sleep.  That’s what happened this morning.  I was listening to his steady breathing as he slept and I had my quiet time, with the monitor beside me.  And then I heard his question, spoken in his sleep:

“What are we doing for supper?”

HaHaHa!!!  He has just proven my theory to be fact!!  I’ve said many times before that I bet Aaron asks in his sleep the same questions that he asks during the day – and he DID!! 

Oh, Aaron – predictable even in your sleep! 

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