Sunday, November 11, 2012

The Learning Curve for Parents of Special Needs Children

Being the parent of a special needs kid is a continual learning curve. Unless you were raised alongside someone who has significant emotional, behavioral or intellectual challenges, trying to cross the chasm between you and your child requires you to continually make blind leaps out of your own comfort zone.

I, for one, never know whether my children are behaving normally for their age. Do I adjust my expectations to meet them at their level? Do I always keep raising the bar in expectations or is there a limit? How do I know when I am pushing too hard? When am I letting too much slide?

For example, today I was playing Battleship with Miss (age 11). I remember having lots of fun playing this game at her age. My son was able to stand losing at her age. But for Miss, being able to play the game to the end when she is losing is a monumental emotional journey of self-control.
She is often seen by others as not having control of herself – angry outbursts, whining, constant opposition; alternatively, a need for constant, sustained attention (ex. 12 hours virtually non-stop one-on-one Mother/Daughter time yesterday.)

At first we had fun bantering and she was cool with that when she was winning, but when lost confidence that she’d be able to win, she couldn’t take it. Yet what I saw today was a child struggling to keep herself in the game when everything inside her was wanting to throw the board down and quit.
Her bright, happy smile was gone, replaced by a thundercloud frown, strident demands and plaintive whining. Yet still she stayed in the game until the last battleship was sunk and she had lost. Huge accomplishment: she was able to leave the room without shrieking, screaming, whining or yelling.
And this is enormous progress.

The ordinary parent might praise her child for staying in the game. I tried that, but it only made her more upset. Whenever she has any strong feelings, she shuts completely down. It will be difficult (or should I say, near impossible) for us to revisit what happened even after she calms down. She closes herself off emotionally so effectively it is darn near impossible to guide her or help her reflect.
Perhaps I’m taking an entirely wrong approach with her. That the armchair judging, back-seat-driving parenting “experts” are right. I often don’t trust myself to pick the right path, to assess the situation accurately.

I often find myself checking out. While I can’t physically withdraw myself from parenting (nor do I want to), I find myself mentally removing myself and emotionally pulling away. Part exhaustion, part self-preservation.

I rarely have enough time away to gain perspective. Instead, I find myself parenting on auto-pilot. (Cruise control sounds way too fun for the checked-out disassociating state I too often find myself in.)
Do I find parenting rewarding? I’d like to say yes, but to do so would be kind of like celebrating at mile 10 while running a marathon.

I know I'm not alone, but sometimes I fear your disapproval. I hope to see you cheering me along on the sidelines.