Dec 10, 2013 1 Share

Using Our Words

Hand holding the word "Care" in front of pile of words.

My daughter wrote a monologue for an acting class about growing up with a sibling on the spectrum.  It made me cry. It made me realize there's a lot that families like ours don't say to each other. We assume a lot, and often we're just too busy living our lives to check in with each other and share our perspectives and our feelings. We're in it together, yet isolated in the experience.

The germ for this monologue probably started when I wrote a column about Brigid, my middle child and only daughter, and how her career choices seem to be related to her status as a sibling with a special needs brother. The things I said in the column surprised her as much as some of her choices surprised me. I hadn't ever really talked to her about her motivations. I'm not sure I ever expressly said how proud I am of her and why. I mean, I 'm pretty sure she knows I'm proud of her, but I don't think we ever had a specific conversation about how so much of her life was influenced by her brother and how she's using the experience in her budding adult life.

So, the monologue. She talks about friends laughing about a funny video on YouTube in which an adult man is having a meltdown. She recognized the characteristics of autism in the man, and wasn't as amused as her friends. She reminisces about her little brother's meltdowns, and how it felt when outsiders witnessed them.  All things we never really talked about as a family, though I see now we probably should have.

When you're living the life, it's hard to step back and reflect. You're doing the best you can, but sometimes it doesn't feel like it. You're sure that if you just looked a little harder you'd find the thing that could make it all better, or at least a little better. You're so caught up in your own experience that you don't do as much as you could to help the others going through it with you. You also don't tell others how they could help. You assume that they see things the way you do, that they understand what you do.

And by "you," I mean me.  Maybe all the other families do a better job of communicating. But maybe not.

In the monologue, Brigid acknowledges her brother's growth and progress. She acknowledges  the hard job of parenting a child with ASD. Things she hasn't expressly said to me, probably assuming that they are things that "go without saying," as we all know them to be true.

I spent this past weekend in New York with Brigid. She has a part-time job with a special needs theater group. The kids she works with, all teenagers with developmental disabilities, were putting on the show they have been working on all semester. I went to the show, sharing the experience with the families of the actors. I don't know these families, yet I know them. I saw a little bit of Reilly in each of the children. I watched the joy the parents felt watching their kids have a great time. I saw the joy the teachers and volunteers felt interacting with the kids. In that small, black-box theater, we were a family.

Words weren't necessary then. But sometimes, I think they are. We probably should use them more, even if only to validate the shared experience and the subsequent feelings. Maybe that is my resolution for the New Year: to use my words more often.

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Beautiful article.

Hits home on so many fronts.