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Monday, February 11, 2013

Support: We Need it, and We Need to Give It, too: Team Issy

It's something brushed over, forgotten, hidden, tucked away: when our children are violent, are aggressive, and we need help to get them help.

Not all of us in the community will be able to personally relate, and that's okay--what's important is that we recognize and support everyone.

Some children (and adults) with autism will be physically aggressive, will need a greater degree of support to manage these outbursts, to find ways to communicate their needs in a way that doesn't hurt themselves or others.

Insurance companies don't like to pay for long-term treatment, and good treatment centers, well--there aren't enough of them, and they're expensive. And the government, through medicaid, rarely wants to pay for the length of treatment needed or period.

It isn't right. It isn't fair. And it adds a stressor to families already teetering on the edge. And this isn't about bad parenting, nor a lack of love and care for the autistic child. These parents who have children with aggression issues often love their kids deeply, are doing everything they can to help them, and they keep coming up against brick walls and no answers.

To compound it, to make it all so much worse, is that when the families do reach out to the community, they are often left with vitriolic, judgmental comments and a holier-than-thou attitude by people certain they could keep it from happening.

Listen, some things you just have to live through to know. We've been blessed that aggression was something we only dealt with for a few years, before Bobby's stroke rewired his brain so that the aggression stopped cold. Before that, I was his punching bag, his jungle gym. When he was three, four, five, that wasn't a problem. When he was nine and 100 pounds thanks to risperadol, getting climbed on, smacked, head butted, well, hey, that shit hurt.

We got lucky. I know that. Bobby knows that. He found other ways to channel his frustration. He got better at communicating. After his stroke, all the meds he was on were stopped, and we brought him home to home school him. Huh, was it the stroke, or everything else after that stopped the aggressive behavior? I'll never know for sure, and that lack of certainty is a good thing.

It means I can relate, that I can stop and consider whether I have any answers to give with absolute conviction to this mom, Kelli, as she battles to raise enough money to keep her daughter in treatment

I don't. I can't even promise with conviction that everything will work out, that things will get better. I can't and won't use platitudes, either.

What I can do is this: share her story and her family's obvious deep love for their daughter Issy and their desire to help her. I can support the family, refuse to shower judgment and disdain on a family that is struggling, hurting. 

Issy has a glorious smile. I can't help but notice how glorious all our children's smiles are, how genuine and real they are. Bobby, my sweetheart of a son, refuses or can't fake smile--so we don't do those family portraits at Sears because who wants to go through that when I can wait at home and capture his joy?

I know, that digresses. But, those smiles, the genuine joy and delight that lights up Issy's face? You need to see that. To know she is a real young woman who needs help so she can live a happy, successful life, so that she and her family can get the tools they need to help her do that.

Team Issy. I'm on it. Are you?

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