Thursday, September 26, 2013

Sense of Loss (Life with #Autism)

Rachel stood there crying uncontrollably. The pain was physical, but it was also emotional. As she sobbed, she kicked out at her brother. Repeatedly.

Kicking at him, but not kicking him.

Haltingly, through her tears, she gasped "I... want to... kick him... but I'm not."  Still, balancing on one foot, her other foot flew out wildly, just stopping short, all she had in her not to connect.

I'm stroking her hair, rubbing her back, hugging her, trying to console her, trying not to cry myself. If she had kicked him, I'd have a hard time punishing her. Lori's holding onto him and trying to get him to see her tears. It's unclear if he understands why she's crying or if he knows and doesn't care.

And now, what I deride as an overused plot device...

Thirty-seconds earlier...

Lately, Ben's been having some rough evenings. The demands of all-day five-day-a-week school is a big change, from a summer of leisure and of four-day partial-day school last year.

Sometimes you can tell when he's about to lash out and avoid a headbutt or face-scratch, but you can't always. And sometimes it's completely unintentional. I usually get one face scratch a day that I manage to not see coming.

So Ben was struggling, but we were getting him ready, the first bit the evening medicine and the good nights. And so it looks like a hug and then BAM - headbutt right into her teeth. Don't know if it hurt him, but boy did it hurt her.

And us.

You often hear about how autism robs a child so much. Or at least our hopes and dreams for them. You hear of the struggles parents face, the grief, the loss of an ideal. The costs for care, the concerns, the fears. The inability to communicate with their child. For many, the ability to even hug their children.

But it robs their siblings, too. The sibling may face teasing, the loss of bonding, less than their fair share of their parent's attention. They may be forced to grow up faster, to find their concerns, frustrations and struggles in life taking a back seat.

And they miss out on that special bonding that siblings enjoy.

If you're lucky, you get a strong child who works hard to understand their sibling's disability, a child who doesn't act out, a child that looks out and stands up for their special sibling, a child who perseveres and grows up despite the disadvantages that come their way. A child who doesn't struggle too often about it not being fair.

I hurt for my son, but I also hurt for my little girl. She is turning out wonderfully, but I feel like we've been forced to make her sacrifice, to make her grow up more quickly, to lose some of her innocence, to make do with less. We don't know how he'll progress, how he'll grow, how he'll mature. It's hard to envision his future, to imagine much each our same little Ben in a growing body.

I don't know what the future holds, but there's a part of me that worries about the day when she and her family may be all he's got.
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