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He Ain’t Heavy, He’s My Brother

December 26, 2010 4 comments

This “In Their Own Words” is by Alysia Butler. She is the mother of three, and her middle son Howie was diagnosed with an autism spectrum disorder at age 3 and a half. You can read more from Alysia at Try Defying Gravity.

It started with paper snowflakes.

We were over at our friend’s house for a pizza party, and my oldest Gerry and his friend were creating paper snowflakes.  They made them in all shapes and colors and pretended to sell them to us from their “artificial snowflake store.”

On our way home, Gerry was working on one of his money making schemes, trying to figure out how to make $400 – enough to buy the Lego Death Star.

“If I sold one paper snowflake for a penny, how many would I need to sell?”

We started to do the math with him in the car when he interrupted us.

“Could I sell them for charity?”

Of course, we answered, knowing that there would be very few people who would buy an eight-year-old’s artwork, but we were going with it.  I started to explain what a charity was to give him some ideas.  People donated to charities for causes that they believed in.  There were charities to help people who didn’t have enough money to eat, charities to help the environment, and charities to help find cures for diseases.

“Is there a charity to find a cure for autism?”

I exchanged sideways glances with my husband.  “Of course,” I said.

“Then I want to do that one…”

(my eyes are getting teary at this point)

“…because I want them to find a cure since Howie’s been getting a little wild lately.”

We quickly ended the conversation in the car and I told him we’d talk about it more when we were home.

A few hours later we were getting the boys ready for their showers.  Gerry was sitting with me in the baby’s room while Howie was with my husband.  I told Gerry why we needed to end the conversation in the car.

“Howie doesn’t know he has autism, so I didn’t want him to get confused or upset by what we were saying in the car.  At four, he’s too young to understand.”

“Well, when will he know?”

“I’m not sure,” I told him, “Maybe when he’s older like you he’ll know.  But right now we don’t want him thinking that he’s any different than anyone else.”

As soon as it came out, I knew those words were a mistake.

“What’s wrong with being different?” Gerry asked.

I started to backpedal.  All the “there’s nothing wrong with being different” phrases started stumbling out of my mouth.

“I feel different because I’m Jewish.  Everyone else in this town celebrates Christmas.  And you tell me there’s nothing wrong with that.”

“I chose the wrong word when I said I didn’t want Howie to think he was different.  You’re right, it’s good to be different and we should celebrate those differences.”

He looked at me thoughtfully.  “Yeah, being different is good. You wouldn’t want to dress the same and act the same way as your best friend, because then no one would want to be your friend because they would all think you were just copying him.”

He continued with, “There’s good different and bad different.  Good different would be if someone had a hard time paying attention in class and they needed something like a pencil to fidget with to help them, that would be ok.  But if someone wasn’t paying attention just to be annoying, that wouldn’t be ok.”

“Right,” I said.  “People learn in different ways and sometimes need things to help them.  But if someone was disturbing the class just to be funny, that wouldn’t be good.”

Gerry paused for a minute to think about this.

“Is Howie in a special class for kids with autism?  Is there a group for kids like him to get together like I do for SibShop?”

I explained that Howie was in an inclusion class at his preschool with kids of all different abilities and he meets with his teachers and other kids to learn special skills to help him pay attention in class and at home.  Different from SibShop, I said, but still learning important coping skills, just like Gerry was in his group.

“Are they helping Howie to stop making all his noises?”

Big sigh. “Yes,” I said.  “He makes those noises when his body doesn’t feel right and they are helping him understand what to do with his body when he feels that way.  We’re working on that at home too.  So when we see his body moving really fast or he’s making a lot of noises, we let him run laps in the house, or get his weighted blanket.  Or have a pillow fight with him.  Those things make his body feel better.”

Gerry looked at me quizzically.  “Pillow fights help him feel better?”

“They do.  So if you see him moving really fast in his chair or making a lot of noises, you can always ask him if he wants to have a pillow fight.  Not a really rough one, but a gentle one.  It might help him.”

He was quiet for a few minutes.

“What if I invented a machine that was a big circle loop and pillows hung from it?  It would go around in a circle and Howie could stand in it and get hit by the pillows. That would help him, right?  I would make sure it was 2 feet off the ground so if he fell he wouldn’t keep getting hit by the pillows.”

(getting teary again)

“I think that’s a great invention.  I’m sure he’d love it.”

“Probably pretty expensive to make, though,” he said, pulling the covers up to his neck.  “I’ll have to think about it more.”

The next morning, I came downstairs to find blue paper snowflakes all over the kitchen table.  And as I sat in the chair, rocking Howie and giving him squeezy hugs with all my strength, Gerry worked furiously with the scissors making all different patterns of snowflakes.

“You know, Mom.  No two snowflakes are alike.  They are all different.”

That is something to celebrate.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

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