Walking the Tightrope

Second day of camp, I pick them up and Riley’s been in the office for the last hour. Her eyes are red. She’s spent. She won’t talk about it.

Todd is home, so we drop Seth off, and I take my girl out to lunch. A hip & happening place, appropriate for cool young women. No mac & cheese on the menu. She orders blackened fish. Looks around at the funky decor.

“I was on the slide, and I was scared, and I was trying to get my nerve up to go down, and this boy, he kind of yelled at me.”

She looks down, fiddles with her napkin, adds,

“He didn’t know I have autism.”

Sweet, sweet girl. Giving him the benefit of the doubt. He didn’t know.

So we talk.

We talk about how it usually goes better if people do know. How it works at Girls on the Run, and clay class,etc. How when other kids understand, they usually are really great about it. Really compassionate.

Our food comes.

“I think you should talk to them Mom,”she says, digging in to her fish.   

Trying to contain my enthusiasm,

“Okay. Do you want me to talk to the whole camp, or just your group?”

The whole camp gathers for assembly before they branch off into small groups. They all come together again at recess.

“The whole camp,” she says.

I tell her, “One day you will be able to advocate for yourself. You’ll talk to people and let them know what you want them to know about you,  but for now I am glad to do it. You’ll be really good at it one day.”

She smiles at me, then adds, “Well, one thing is clear. I love blackened fish.”

When we get home I call camp and get their approval for speaking at the morning assembly.

Later that evening, Riley and I review what I will say, and she freaks. She thinks maybe it isn’t such a good idea. I don’t dig my heels in, even though I’ve already talked to the camp administration, even though I think it is vital for her success this summer. Even though God damn it I need this break. Maybe I’ll talk. Maybe I won’t. We’ll see how it goes. I take out some words that might have triggered her.

Next morning, I somehow get her out of bed, and dressed, and ready to go. She sees the little index card I’ve prepared, and doesn’t melt. We don’t mention it.  

We get to camp. She is not running away. She knows I plan on talking and if there is one thing about Riley, it’s she would be so out of there if she really wasn’t okay with this. Todd and I look at each other. He runs his hand down my back.

Walking the tightrope, we go in.

All the campers do a morning song, and a Balinese dance they learned the day before. She’s beaming. Happy. Engaged. Twirling. Smiling. Not worried.

The main counselor introduces me. 

I tell them who I am, and I tell them about Riley. How her senses and nerves are “super duper.” How she feels things extra. How sometimes it can be overwhelming for her. I use the term “autism,” which Riley prefers to Asperger’s. She told me this the day before at lunch.

“Asperger’s has the word “ass” in it, and it sounds kind of foolish, and it is a possessive word, like…I’m not Dr. Asperger’s thing that he owns, you know?”  

So I use the word autism, and I tell the kids about my amazing daughter, with the super duper senses, who sometimes becomes overwhelmed, but you know that’s cool because there are so many really incredible things about Riley. And I name them. And I tell them how lots of really creative people are very sensitive. And isn’t that great at a camp with music and art and drama? And I tell them how inspiring she is. And how her bravery has made me more brave. And how lucky I am to be her mom.

And she sits there in a room full of dozens and dozens of campers, and she clasps her hands together to restrain her arm tic, which only happens when she is really happy. Really stoked. And she looks proud. 

Seth looks proud too.  

And we get out to the car and I breathe, because I went with my instinct, and not her fear.

And she let me.

This entry was posted in Asperger's, autism, disclosure, family, Parenting. Bookmark the permalink.

21 Responses to Walking the Tightrope

  1. Kelli says:

    I am so PROUD of the person and the mother you are. You are an amazing family and I love you…all of you!

  2. Jan says:

    Oh, Michelle….. I feel such pride being a reader of this compassionate blog and I don’t even know you. And still I cherish you and your family.

  3. mom says:

    Another awesome day for the O’neils. You are such an inspiration to so many people
    Love and hugs

  4. naomi says:

    I’m so touched by what you did Michelle and Riley. Real advocacy takes the impersonal and makes tangible and personal. It took a lot of courage for Riley to be open about her sensitivities but now all those kids will have a personal connection to autism. That impact that will spread much further than camp.
    Love Riley’s thoughts about the title ‘Aspergers’ which demonstrate that sometimes literal thinking takes us directly to the truth!

  5. *m* says:

    Goosebumps — again.

    Bravo to all of you.

  6. Carrie Link says:

    Well, one thing is clear, YAMH.

  7. JoyMama says:

    Mama walks — Mama rocks.

    And so does Riley. Wow.

  8. Lydia says:

    I’m a little out of words tonight after a long day, but I wanted to tell you that I like this and I would choose no better person to advocate for “us” than you, Michelle. Thank you, big time, from me too.

  9. K Fuller Yuba City says:

    Would you please adopt me?

  10. pixiemama says:

    Yours is an awesome family. Love you!

  11. Deb says:

    Such a wonderful story! I especially love her reason for preferring “autism” over Asperger’s. What a girl! What a mom!

  12. such a wonderful job your doing with your girl! And I agree with her I prefer using the term autism instead of aspergers. In my mind they both mean the same thing. I hope she enjoys the rest of camp!

  13. One Mom says:

    Okay, wiping away the tears now…my heart is singing for you, girl. This is amazing.

  14. Wanda says:

    You are all so brave. Walking that tightrope without a net.

  15. Jerri says:

    Your ability to walk this tightrope, even though your own balance has felt precarious lately, is humbling, Michelle.

    Your grace shines a light for others. Your honesty reminds us we don’t have to be perfect. You triumphs draw us in.

    All blessings to you and all you love.

  16. Vicki Shepherd says:

    What an awesome story! Thanks for sharing your insight and experiences with campers, counselors, and internet people alike. I work with these kids and they are amazing people who teach me new things every day! Riley is special and so is her mom! Blessings to your family!

  17. Penny says:

    Absolutely wonderful.

  18. kario says:


    You guys rock. Please give Riley an extra hug for me at being brave enough to talk to you about what happened, and even more courageous to ask you to address others about it.

    Hope the rest of camp just knocks their socks off and you get your break.

  19. graceonline says:

    Riley is so smart–such insight! So is her mom.

  20. amber says:

    Good stuff, you.

    I actually agree with R about those words. I always feel funny saying the “ass” word. Amazing she is so young, and so insightful about it. love that.


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