Navigating Our New Social Role

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Last year I wrote a post about “safe conversations” with casual acquaintances and strangers. I was finding that almost any general small talk led to questions about my daughter. “Oh, she must be excited about summer break coming up.” Or, “That’s such a fun age. What does she want for Christmas?” I think it’s great to share autism awareness, but sometimes it’s easier to lie. I don’t need to explain this to everyone, do I? Sometimes I just want to be on my way as quickly as possible.

Last week I was with Teghan at the grocery store when a man approached her with a magic trick. She wasn’t responding, and I could tell he felt awkward. I told him she would still enjoy it, she just didn’t know how to communicate. It was uncomfortable. He obviously regretted the effort. I get it, but it’s not fair to Teghan. She deserves a magic trick as much as the next kid; her inability to acknowledge it appropriately shouldn’t matter. But it does.

In my post last year I made the point that the more I talked about her autism, the more people I found who understood. That’s the good news. But the other response remains, and there is a similar uneasiness with those who already know us. For many people it is too personal to talk about who our child is. What else can I do? We’re talking about kids and she’s the only one I have.

I couldn’t put my finger on it before; it’s that weird response we get from others when we talk about her, as if we have wandered into some kind of forbidden land. Occasionally we are asked directly to not mention her autism. “Man, I don’t need to know.” That’s a real quote from our neighbor. Something’s different about your kid? Whoa….too much information. I’m not prepared to take our relationship to that place.

Listen, dude. Letting you know the reason why she isn’t responding to your attempts at conversation is me being polite; don’t treat me as if I just told you I was on my period or something.

Pity is the most common response. Our experience is different from theirs. They don’t know how to join in the conversation properly, so they offer sympathy. I get a lot of “I’m sorry” and “I can’t imagine.” I hate that talking about our daughter makes people uncomfortable, even if it’s in the most subtle way. I don’t know how to explain to them that they are wrong about us. We are so used to all this that we forget others can’t handle small talk about therapies and bathroom catastrophes. Or knowing what school she goes to. For us it’s no different from when they tell us Billy is going into the fourth grade next year. These are just facts that are happening in our world.

We are lucky to have a few friends who really get it. We can talk freely. These friends only get it because Teghan is not their first encounter with autism. Everyone else is still where we were before the diagnosis. They don’t understand how we feel about it now. We didn’t just wake up yesterday and find our six-year-old couldn’t communicate and was willing to fight for the right to run into traffic. We’ve been around the block a few times. We accept this world as normal, and we do have a sense of humor about it.

photo 1 (5)I used to believe people were walking on eggshells for us, but I was wrong. We are the ones walking on eggshells for them. They are afraid of the unknown. How should they act? What should they say? Why are we ruining perfectly good conversation with things that make them uncomfortable? And why couldn’t we find a babysitter so they don’t have to be confronted with this in their leisure time? I suppose the idea of hanging out with Teghan might be intimidating to the inexperienced, but she is quite easy. She doesn’t play social games. She will either ignore strangers, or use them to get objects and food that are out of her reach.

She will definitely steal your drink.

Among our friends and family who don’t take time to understand and know Teghan, there will always be moments when we feel like “that family” even in our own small circle. They don’t know us well enough. There will be many looks of unnecessary pity; or flashes of regret across the faces of those who just wanted to vent about their kids for a minute. I know in my heart that we will face this challenge forever. And unlike Teghan’s autism, we will never really get used to it. We can only get better at navigating our new role in the parenting social world.

 

2 thoughts on “Navigating Our New Social Role

  1. You nailed it! I get so sad when people change the subject as quickly as possible when my daughter or autism comes up. I think you zeroed in on a lot of the reasons that happens.

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