Wednesday, 2 July 2014

No Margin For Error

This is one of those really frustrating moments where something has gone wrong and there's really no one to blame for it. 

My sister's wedding is coming up this weekend.  We know it's going to be a challenge for the boys.  Lots of people, strange food and music, staying up late, lots of having to sit still and be quiet.  We've been trying our best to counterbalance that with social stories, plans for entertainment and trying not to stress them.

Today I discovered all of that work may end up being useless. 

For Alex, one of the things we know is that he seems to have trouble processing large doses of sugar.  Since he doesn't eat many solids (and chocolate and candy are solids), it's generally not been an issue.  But there is an Achilles heel: ice cream.  Pure, sweet semi-frozen sugar wrapped in dairy.

We know his limits: one cone per week.  More than that and we get a behaviour burst where he becomes oppositional, highly excitable and has difficulty controlling himself.

Knowing this, we were strategic.  We avoided giving him ice cream on the weekend so that he could have some for Canada Day.  Dave planned to take him out for a nice treat while my father and I took Nathan to the local fair.

My father was also taking Alex to the fair and to see the fireworks in the evening.  A solid plan, except for the fact that he forgot that Alex had already had ice cream.

When traffic to get out of the fair was understandably bad, he decided to get Alex a treat while they waited: an ice cream cone.

My dad would never do anything to sabotage Alex's chances of success deliberately.  We had told him that Alex wasn't getting ice cream on the weekend because we wanted him to be able to have some on Canada Day.  I had told him that Alex and Dave had gone in the afternoon while we were out but I guess it didn't quite sink in.  My dad thought it was a perfect solution, preventing Alex from getting bored and frustrated while waiting in traffic.

We're already seeing the first echoes of difficulty.  Tonight's supper went poorly and he refused to participate in soccer, which he usually loves.  Usually the behaviour burst for two ice creams in a week lasts 3 to 5 days.  The last time he had two in one day, it lasted for 8 days.

At this point, there's nothing we can do.  We already had support in place for a worst-case scenario.  Now we know it's almost a guarantee we'll have to use it.

Alex may still surprise us.  It's been known to happen.  But the odds of it are unlikely.

I'm incredibly frustrated about this.  Kids and weddings are dicey at the best of times but add in autism and the margin for error shrinks to a paper-thin line.  One simple act and the odds of success shrink down to almost nothing.  Granted, they weren't huge to begin with (I was putting them at around 20% for getting through the ceremony without incident and around 10% to make it through the reception.) 

I keep telling myself there's nothing more I can do.  There's nothing which will get it out of his system except time and patience.  If things don't work out, then they don't work out.  I've done everything humanly possible and now I have to accept that things are out of my hands.

These words do not sit well with the product of multiple generations of control freaks.  But what does work is reminding myself that holding onto this is only likely to make things worse.  Past is past and it's done.  Cope with what I have, rather than what I wish had been.

I'm grateful my dad spends as much time with Alex as he does.  Alex loves going out with his Avi and gets to experience way more than he would if it was just Dave and I.  It's really great to watch the two of them together.  So I want to be clear: this was a mistake and one which could have happened to anyone.  My frustration is with the results, not the action.

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