Sunday, November 16, 2008

An apology

Yesterday, I found out that I owe Dave Hingsburger an apology.

Dave writes an amazing blog at Chewing the Fat, and I look forward to reading it every day. Some days he makes me laugh, some days he makes me cry, but he always gives me something to think about, and I almost always agree with him.

Except on this one issue. See, Dave has blogged numerous times about caregivers and touch. He has some pretty strong opinions on the ethics of touch, and while I completely understand why he (and others in wheelchairs) doesn't want complete strangers touching him (having survived pregnancy and those freaky people who want to touch your belly), I just couldn't get my head around a particular blog post of his. You can read it here. When I read this, I just couldn't conceive of affectionate touch between a parent and child being harmful. Dave spoke of the young teen in his post being "stuck at touch for the age of two," but I didn't see the problem.

Until yesterday.

I spent my Saturday in a fantastic training on having difficult conversations. We learned about engaging in learning conversations, rather than telling conversations, and some great tools for making conversations "safe" for both parties, so you can get past individual positions and down to the real issues. One of the group was a young man (early 20s) who introduced himself as having high-functioning autism. He was a neat kid who had plenty to add to the discussion, and a real purpose for being there. Some of his comments led me to believe that the majority of his difficult conversations have been with his mom - sounds like a typical young adult, don't you think?

His mom showed up during our last break, and she stayed through the rest of the training. When she walked in, she came up behind her son and put her arms around him. From that point on, there was rarely a moment when she wasn't touching him. She ruffled his hair. She rubbed his arm, his back, his neck. She squeezed his shoulders and kissed his head. It gave me the creeps. I touch my daughter in similar ways when we are snuggled on the couch watching tv, or at bedtime, but my daughter is SIX.

The worst part about this mother's touch was that it almost completely shut down the young man's interaction with the group. We had to get past her to get to him, and he hardly tried to get past her to reach us. For the first time I understood that touch - even touch that is intended to be good and affectionate - can be damaging. It can place limits and create barriers, and that is not what any of us who have children with disabilities want for those children.

So, Dave - I'm sorry. And thank you. Keep doing what you're doing, because even though some of us are a bit slow, we do eventually get it.


Dave Hingsburger said...

wow, what a powerful piece, I am strong on the touch thing because it's really, ultimately, about power and control! Dave

Tara Marie said...

Amy, this is such a wonderful post. I think that's why I love to read Dave's blog and other advocates on disability like Micheline Mason and Norman Kunc, is because they speak from the heart of understanding.

I am so thankful that we have these resources to read and begin to understand.

mum2brady said...

Hmmm - I read his piece too - linked from here and I was a little offended. I think that you have to go on a case by case basis - how is Dave to know whether his girl has an anxiety disorder or something on top of simply having T21? I think every parent does the best they know how - although I do agree that there are helicopter parents who hover over their children and don't let them grow their own wings. I think it is hard at times to know exactly what to do and it's not fair to judge a person for what they do when they are trying the best they know how. It sounds like the young man you met had many great skills, and I'm sure his parents probably had something do with helping him get those.

I know I'm guilty of being a helicopter mom sometimes, it's just that I want things to turn out positively for Brady and sometimes I step in too much to try and make that happen - I am aware and trying to not be so "helpful" as I realize it isn't always helpful :)

Thanks for you insightful post....


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