It was just an ordinary conversation.

Howie and I were in the car.  It was just the two of us, on our way home from working at the sensory gym.  As is our usual routine, Tim picked up the other two boys and took them home for dinner and Howie stayed with me to finish his homework and play.

While driving, I started talking about the new skating rink that opened up in our town and asked him if he thought he’d like to take lessons.

“Oh yes!” he said excitedly.

“They have special lesson times set aside for kids with sensory issues.  Do you think you’d like that?”

We haven’t had the whole “autism” talk yet.  Or the partial talk.  Or whatever it will end up being.  For now, we’re at “sensory issues”.  Because for Howie, that’s the most tangible and easiest for him to understand, both at school and home.

“Yes.  That sounds good.”

There was a pause.

“Hey Mom.  Are there some kids who don’t have sensory needs?”

I took a minute to gather my thoughts.

“Well, I think everyone has some things that bother their senses.  Some people have learned to work through it so it doesn’t bother them as much as others.  I’m sure there are kids in your class that have sensory issues that really bother them and some that do not.”

I looked in the rearview mirror and I could see him trying to process that.

“Do grownups have sensory issues?”

“Yes, absolutely.  I do.”

“You do?”  You could hear the surprise in his voice.

“Yup.  I am not a fan of socks, for example.  And I really hate any clothing touching my neck.  Like scarves.  Or turtlenecks. But a lot of times, grownups learn what makes their senses unhappy so they don’t get into the situations that make them uncomfortable.”

“What’s a turtleneck?”

I explained what it was, realizing that no one in our family wears anything like that.

“Hmmm.  I think I would like a turtleneck. My neck gets very cold all the time.  Do you think you could buy me one?”

It took me a minute to figure out that I had projected many of my own sensory issues on my kids.  No turtlenecks or scarves.  No wool or chenille. When I cook, it’s bland.  I never really stopped to think if my kids needed scarves or liked spicy food or could touch a cotton ball.

“Well sure, you can have a turtleneck.  I’ll get you one and you can see if you like it.”

“Can I have earmuffs too?  My ears get really cold.”

I cringed at the thought of anything on my ears.  “Of course.  Ear muffs too.”

“Mom. Do you have any other sensory issues?”

One glance in the mirror and I knew he was completely engaged in this conversation.  More so than any other conversation this week.  He had been so…off these days.  A lot of stimming.  Difficulty focusing.  Engine running at full speed.

I knew I had this one time now, in the car, to connect.

“I do,” I said.  “I really hate big stores.  Like Wal-Mart.  I get very uncomfortable in them.  I feel like my skin is moving and I get very fidgety.  So as a grownup, I have learned not to go into stores like Wal-Mart.”

Another pause.  And then…

“I think I figured it out, Mom.  I think you’re afraid that you’ll get lost in there.”

I breathed in a bit.  I had never thought about it like that.  Big store, short person.  My claustrophobia and fear of not being able to get out.  It’s why I avoid haunted houses, corn mazes, and apparently, big box stores.

“You know Howie, I think you’re right.  I think I am worried that I won’t find my way out.”

It got very quiet in the back of the car.

I figured I had lost him.  Another glance in the mirror and I could see he was staring out the window into the dark.

“Mom, can we go to Wal-Mart some time? Just you and me?”

I gulped, wondering where this was going.  “Why?”

“Can we go there and not buy anything?  Is that legal?”

I laughed.  “Yes, of course it’s legal.  It’s window shopping, remember?”

I took a moment.  “But why do you want to go to Wal-Mart?”

“I want to go with you.  It’s time to face your fears.”

Face Your Fears.  Said with emphasis.  Like a coach. 

Or a super hero.

My eyes welled up.  “You would do that with me?”

“I would.   I would say ‘It’s just a huge store.'”

I had stopped at a light.  I turned around to face him.

His grin lit up the car.

“Thank you sweetie. I would really like that.  You’d do that for me?”

“I would.”

We pulled into our driveway.  I helped him out of the car and gathered up all of our stuff.

“I really appreciate that you would help me face my fears,” I said.  “Do you have any fears that I could help you with?

Without skipping a beat he said “Nope.  I am not afraid of anything.”

And he went into the house.

An ordinary conversation turned extraordinary.

My hero.

photo(18)

Watch out, Wal-Mart.  Here we come.

Just a day job that’s someone’s gotta do
It’s kinda hard when everyone looks up to you
Try to make it look easy, gonna make it look good
Like anybody would

I’m just your average ordinary everyday superhero
Trying to save the world, but never really sure
I’m just your average ordinary everyday superhero
Nothing more than that, that’s all I really am” – Everyday Superhero by Smash Mouth

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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