There was another hero there that morning with Eustacia Cutler.

He was sitting two seats over from me.  A man, slightly balding, sitting quietly just like the rest of us.

I was so engrossed in Mrs. Cutler’s words that I didn’t even notice him.

Until he stood up to speak during the Q&A session.

He raised his hand and was given the microphone.  His voice shook a little.

He introduced himself as a 55 year old man with a brother with autism.

His brother is non-verbal.  He wants help and advice from Mrs. Cutler on how to reach him.  Or, more directly, can he still be reached?

“Of course,” replies Mrs. Cutler.  She’s trying to feel him out more, get more information on what he means and how he connects now with his brother.

“We were estranged for a long time.  I’ve just started to see him again.   You see, Mrs. Cutler…” His voice trails a little. “My parents did the reverse of what you did.  My parents put all their focus on me and my other siblings.  Not my brother.  It was no fault of theirs.  It was they knew to do at the time.”

I let out all the air I had been holding in.  My friend Jess touches my shoulder.  She knows.  This is too much.

The sibling thing.  The balance.  The feeling like you’re sacrificing one child’s needs for another.  Not knowing what is right or wrong but just hoping you’re doing the right thing.

Mrs. Cutler writes in the preface of “A Thorn In My Pocket” that her other three children asked not to be included in book.  She writes  “While trying to help Temple, I left them in the dark. Temple and Daddy were the stars – the siblings and I, minor constellations circling uneasily around them.”

She said that autism needs to be viewed as a family issue.  That all the family members need counseling on the disorder.  Too often, she said, the siblings become helpers.  “Children should be children,” she said.

And here was this man – this 55 year old man – still coping with trying to figure it all out.  After fifty-five years, autism was still an family issue.

**********

I knew I had to talk with him.

After getting my book signed, I went up to the man.

“Hi,” I said, “I just wanted you to know how much it meant to me to hear your question about how to connect with your brother.  I think it’s pretty incredible that you’ve found your way back to him.  I have three boys, and my middle one is on the spectrum.”

(yes, I said just my middle one.  Somehow, my subconscious forgets that I have two kids on the spectrum. I don’t even want to think about what that implies.  It’s clear where my energy goes.  I’m ashamed to even admit that. Can we just move along…)

“Oh, thank you,” he said. “Yeah, it’s been great. You know, my parents.  They did the best they could.  They didn’t know…they didn’t know.”

He continued. “He’s up in Montreal and I go to visit him when I can. I bring my kids to see him.”

“I think that’s wonderful.  It’s great that they get to be with their uncle.” I was smiling.  My eyes were teary.

“Yeah, it is.  I don’t know if it really means anything to him, though. He seems happy to see me.  He likes to go out to eat, so we always do that when I see him.  He has his coat on already when I get there.”

I gulped.  Swallowing the tears.

“Well, there you go,” I said. “You are connecting with him.  It does mean something to him.  You found your thing.  I think that’s everything.  My oldest…he struggles to find that connection with his brother.  I’m so glad that you’ve found yours.”

“Well, yes.  I guess I have,” he said. “Thank you for sharing that with me.”

I shook his hand and said good-bye.  I turned back to Jess and tried to breathe.

**********

That night, Gerry came over to the dinner table and slumped into his chair.

“When will Howie open the Lego sets he got for his birthday?”

I looked over and there were two Lego building sets on the floor.  Howie had opened all his birthday presents and was playing with them one by one.  This is the classic difference between my two boys.  Howie opens one at a time, and perseverates on that one toy.  Then…moves on.  Gerry needs to open them all and put everything together immediately.  He couldn’t stand the fact that the Lego set had been sitting there all day.

“He will get to it.  Be patient.”

“But I told him I would help him with it.  I want to do this with him.  Why won’t he open it?”

“He will.  It’s his set.  In the meantime, why don’t you play with what he’s playing with?”

“I’m sick of Hot Wheels,” Gerry muttered. “I just wanted to find that one thing that we both liked doing together.”

He slunk off, back up to the safe haven of his room.

********

The man that I met that morning had his connection.  After all these years, he found his way back to his brother. They were bonding over their love of restaurants, connecting without even knowing it was happening.

He’s a hero.  A man who went against everything he knew and forged a path back to the brother he loved.  Unconditionally.

Sigh.

I know someday my boys will be heroes too.

But right now?

I don’t need them to be anything more that just brothers.

**********

Temple Grandin and Eustacia Cutler have set up a fund to help families address the needs of autism.  Find out more by clicking HERE

And to read the most incredibly moving and powerful essay on “innocence lost – the siblings”, click HERE

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

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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