We throw the word hero around a lot.
Athletes are “heroic” when they lead their team to victory in the Superbowl. Actors give “heroic performances” when playing an edgy role on film.
And yes, to many, they are heroes.
But for me, my hero is someone who has stood up against those who fought to tear them down. Who do things that people say can’t be done, not for their own glory but for the sole purpose of helping another. A hero, for me, is someone who takes the world on, holds that world on their shoulders, and carries the burden so that the rest of us can move freely.
I met such a person on Saturday. Her name is Eustacia Cutler. Temple Grandin’s mother.
“Heading out to hear Eustacia Culter, Temple Grandin’s mother, speak about her life and about raising Temple. I cried three times just reading the prologue of her book “A Thorn in My Pocket”. I am so screwed today #bringingtissues – Try Defying Gravity’s Facebook status Saturday morning
I sat in the room with about a hundred other people. I settled in to my seat next to my friend Jess. I balanced my coffee, muffin and notepaper on my lap.
Mrs. Cutler came into the room. She asked if we minded if she read some of her remarks because the words “cut close to the bone.”
My eyes welled up then and never stopped.
For two hours, this incredible eighty-five year old woman captivated the entire crowd.
I hung on her every word.
I can’t read my notes. I was scribbling so fast trying to keep up with everything she said that I can’t read my own writing.
I have snippets of phrases like “Autism is a buzz word, but no one knows what the buzz is about”, meaning that the world out there knows the word autism, but they don’t understand how to interact with our children.
I wrote “She keeps saying “our children’.
And then while giving the history of autism she said “Autism is old. Our unease with it is old.”
I have another half sentence of “autism can be soul destroying at first for the parent, you think you are no good as a parent and therefore no good as a person.”
And then these:
“You will come to terms with it, not like you thought you should.”
“There are no answers, only choices. Persistent choices. If it’s not working, change it.”
“You too will be changed.”
I am truly having trouble processing all that she said.
But she did talk about one thing that, for me, “cuts close to the bone”.
Her book is called “A Thorn in My Pocket” for a reason. She told a story about Robert Frost and how he came late to the lecture circuit. Here’s the quote from her book:
Theodore Morrison, who knew Frost well, said that Frost also came late to lecturing and was never entirely at ease with it.
“I always carry something in my pocket I can touch when I’m talking”, he told Morrison, “so I’ll remember who I am. Lately it’s been a thorn.”
The thorn, Mrs. Cutler said, represented identity. A way of remembering who she is as a person, not just as Temple Grandin’s mother.
She said that “autism helped me learn. But it was not enough.” She was an actress, a singer, a journalist, and now a highly sought after lecturer.
She rejected every convention at the time and forged her own path, knowing that the only way to help her children become fulfilled was for her to feel full too.
She needed her own identity. So while her daughter’s autism was woven through the things she did, it wasn’t only about her daughter. She did research for a local PBS station on autism, but she was the journalist. She sang for veterans from the Korean War who were permanently injured, trying to pull the smiles back out of them.
She was - is – an autism mom…plus.
I have spent a lot of time recently thinking about what I want to do now. As in the “you’re-in-this-next-stage-of-your-life-so-what-will-you-do” sort of way. I had been looking at it as something that had to be separate – something not autism-related.
Up until this moment.
What Mrs. Cutler showed me is that you don’t need to escape the autism to find a piece of yourself. You can embrace what you’ve learned from your child’s autism and then make it a part of what you do for you.
Like my friend did with her Lego club. Or like what my friend is doing with her tennis camp.
I can take what I know about autism and sensory processing disorder and create my own passion from it. It started with my son. But now it can be about so much more.
When Mrs. Cutler’s talk was over, many of us stood in line to get our books signed by her.
As I waited, I rehearsed in my head what I wanted to say.
I wanted to tell her she was my hero, but not in an overly fawning sort of way. I wanted to tell her about my boys and how amazing they are and how they take care of each other. And how they make me laugh and cry.
I wanted her to know about The Oxygen Mask Project – that we were trying to help parents find that “thorn” in their pocket. A way to remind parents that they need to take care of themselves in order to be there for their children.
More than anything, I wanted to keep my composure. Do not cry.
When it was my turn, I got down on my knee and started gushing.
“Mrs. Cutler, it’s such an honor to meet you. I know you hear this a lot but you are my true hero. I have three boys, two on the spectrum. I can’t tell you how amazing it is to be here with you today.”
(so much for not fawning. Or sounding like an idiot)
She looked at my name tag so she could spell my name right. And I continued talking.
“My friend and I started this website to do just what you were talking about. Helping parents remember that they are more than just their kids’ caretakers. It’s just like you talk about so much in your book.”
Mrs. Cutler looked right at me.
“It is so important,” she said. “If we don’t have ourselves, we have nothing.”
And with that, the tears started to fall again.
There were people there that day who have written about that morning much more eloquently than I can. So when you can, please read HERE. And HERE.
I have one more post in me about this life changing day. I hope I can get the words out.
“And then a hero comes along
With the strength to carry on
And you cast your fears aside
And you know you can survive
So when you feel like hope is gone
Look inside you and be strong
And you’ll finally see the truth
That a hero lies in you” – Hero by Mariah Carey