I always knew living with autism was hard but only, it would seem, in an academic kind of way.
(I hasten to add that these are not my arms)
Over the years we've plodded on through the tiresomeness of appointments, struggled to bear the weight of our grief at having an autistic child and fought to master the principles behind the therapies we have to administer.
Having an autie kid brings a whole new level to the meaning of exhausted.
But we found our reserves, drank lots of coffee (and maybe a little merlot) and got on with it.
You hit your stride when you have a kid with special needs and, once you've warmed up, you can comfortably lope along for many, many miles.
We have jogged along many pretty pleasant stretches where we thought "hey, this autism thing is OK"
I can't speak for Bob's Dad, but I have even indulged in a small amount of self-satisfaction that I could do
While I wouldn't go so far as to say that I became big-headed about coping with being an autie parent, my hats were starting to grow uncomfortably tight, and there was talk of widening the doors to allow the safe passage of my giant ego.
All it took was for school and services to be subtracted from our happy equation, for the brown stuff to hit the fan.
This is a difficult summer.
Bob is going to sleep late, waking early (sometimes horribly early, like 3am) and seems to be focusing all his energies on developing ingenious escape plans.
There are tantrums that could be measured on the Richter scale, exploratory play
that would be better described as wilful destruction and an exhausting cycle of never, ever
being able to let your guard down.
I miss school.
We also have to factor in the fact that Bob is growing bigger, stronger and ever more clever.
So it seems we will have to change our game plan for next year if we want to continue our marathon without buckling at the knees.
Complacency with autism can lead to unforeseen meltdown, while our brains have shifted into neutral.
Next Summer we will know to change our running shoes and to switch gears out of our comfort zones.