He Has Autism

He Has Autism

By Jennifer Smyth

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After her 8th birthday party in October, my big hearted, brown eyed daughter, Holly, decided this was the year she wanted to educate her classmates about Autism, and more specifically about her twin brother, Nick.  A petite girl, and classmate, named Emily had been the impetus that chilly fall night, arriving at our house overwhelmed by Nick’s jumping and loud shrieks of excitement, but leaving with an understanding of him.

“Mom, I want to explain Nick to people, but not because he is doing something they think is weird.” She had become an accidental interpreter for her brother, fielding questions such as “Why won’t your brother say hi to me?” or more hurtful ones, “What’s wrong with him?” from peers on the school playground and from strangers at the grocery store, who apparently felt it was OK to turn to my 8-year-old and say, “What’s he so mad about?”

“He has Autism” had been her dump and run response since we had “given” her that response language in kindergarten. But there had been lots of swings, slides and checkout counters since then, and it just wasn’t enough anymore.

“It doesn’t help to say he has Autism, if no one knows what it is. And I don’t like talking about it in front of Nick. I think it hurts his feelings.”  With her teacher’s blessing we chose a Tuesday in April, during Autism Awareness Month, to talk to her class. The night before, I scattered picture books on the dining room table. Kneeling on the chair she leaned forward on her elbows to study each one. Her long brown hair still wet from her bath dripped onto the table as she declared, “This one” with confidence, holding up a brightly illustrated book told from the point of view of a twin sister, whose brother has autism.

“Great choice. Which one of us should read it?” I asked.

“I will,” she said.

Still riding the wave of excitement in the morning, she slid the book into her backpack along with the rubbery blue wristbands with the words Autism Speaks, It’s Time to Listen that we purchased for the class. “I’ll see you in two hours,” I said as she slid out the car door, blowing me a kiss.

Minutes dragged as I cleaned the kitchen and then drove aimlessly up and down streets so I would arrive at just the right time. Waiting outside her classroom door, my stomach churned. Maybe this was a bad idea. What if I cried in front of all these kids? Her teacher, Miss Howard, smiled and welcomed me inside. Holly hid her face in my shoulder and hooked her arm through mine as we situated ourselves on chairs facing the classroom filled with 23 2nd graders who were negotiating their spots on the rug. Emily smiled as she crisscrossed her legs at her chosen location at my feet.

Holly leaned her mouth to my ear, using her hand to shield any would be lip readers, and with a whispery warm breath said, “I don’t want to read by myself, let’s do every other page.” I nodded.

“Some of you have met Holly’s twin brother, Nick. He has Autism, and since April is World Autism Awareness Month, we wanted to share some things with you.” Hands started flying up. Some with extra wiggly fingers as if begging to be called on. “We’re going to start with a book,” I said, as their teacher motioned them to put their hands down. Most of them did. Holding the book up high for everyone to see, Holly read the title “My Brother Charlie” and then the first page. She hesitated, waiting for me to read the next one. “You keep reading,” I said. Her voice grew stronger and steadier with every page. “When we were babies, I pointed out flowers and cats and fireflies … but Charlie was different.” The words of the story could have been her words. It WAS her story. So when she read the line, “One doctor even told Mommy that Charlie would never say ‘I love you'” my throat tightened, I chewed the inside of my mouth and tried to find a point on the wall to stare at, but instead my eyes locked on her teacher who had tears running down her cheeks. Hold it together. This is not about you.

Shutting the book with finality, Holly looked to me. I turned to the class. “Any questions?” Almost every hand went up

“You said it’s hard for him to talk. Does he have a voice box?”

“Does he go to a special school?”

“Is Asperger’s the same as Autism?”

“How does he tell you what he wants?”

They used words like sickness, and disease.

“Will he grow out of it?”

Sitting up straight now and addressing her class, Holly called on students and answered the questions as fast as they were asked. Emboldened by her authority, she went for a little shock value. “He doesn’t get embarrassed like we do. He could walk down the street naked and it wouldn’t bother him.” She giggled when she said it, knowing that she was kind of getting away with something by saying “naked” in her classroom.

And she told the truth. “He will yell and scream when he wants something. It doesn’t matter where he is or who is there. But he’s not a brat, he is sweet. His brain just works different.”

“Noooo,” they protested when Miss Howard announced it was time for recess. Heading towards the classroom door they blurted out the tidbits they still wanted to hear more about as they passed me. Holly had already skipped off with her friends, but there was one boy was hanging back, a sweet class clown of a boy, waiting for my attention.

“Hi Jackson.”

“My grandpa writes poems and there is one I think you would like.”

“Tell me about it.”

“It’s about a guy who accidentally walks into a spider web and thinks it’s really gross. But then he takes a step back and looks at it and realizes how beautiful it is. Anyway, you might like it.”

“Thank you Jackson. That’s beautiful,” I said, dumbstruck by the deep connection he had made. He ran out the door with the rest of the kids.

The next morning, watching my beautiful spider web of a boy saunter into school, my phone dinged the arrival of an email. It was from Emily’s mom.

Here is a photo I took in Emily’s room. After the Autism Awareness talk she came home and taught her dolls all about it!

There were two notebook pages taped up to an easel. Both had “atsam awarnis” written across the top with bullet points from the class conversation. My favorites were “likes to fluff hair” and “they hear everything you say.”

Emily had never met a child with Autism until she met Nick and since then we have met another family with an Autistic child and I don’t think Emily even blinked. Thank you, Jennifer and Holly for raising awareness.

PS I’ll work on her spelling!

Best,

Mindy

 

Jennifer Smyth is a work in progress. She lives in Fairfield, Connecticut with her wonderful husband and two amazing kids.

 

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Learning Autism

Learning Autism

By Jennifer Smyth

Holly and Nick art 3The minivans and SUVs all arrived at once.  I held the screen door open as the girls bounced into the house. My daughter Holly had wanted a “Holly-ween” themed party for her 8th birthday and had invited the 12 other girls in her class. Since it was October, and school had just started a month before, there were a few new faces at our door.

One of those faces was framed by long brown hair that had wayward strands tucked behind one ear. Her name was Emily.  The large smiling skull on her purple shirt stood in contrast to her petite frame as she almost tip-toed through the doorway and into the foyer.  The last one to arrive, she was instantly enveloped by a throng of excited, screeching girls. Nick, my son, and Holly’s twin brother, was also jumping up and down with excitement, his arms straight and stiff all the way down to his wrists; his hands flapping wildly.

Although Nick went to a different school, most of Holly’s friends knew him from past parties and events. Their interest, curiosity or fear depended on their own personalities, prior experience with “a Nick,” or just the mood du jour. But he was a new experience for Emily. She took a step backwards and stared at Nick, who was a head taller than her and built like a linebacker.

“Emily, this is Holly’s twin brother Nick.” I said, kneeling down, keeping Emily to my left and shifting Nick to my right. And then knowing he was listening to me, despite the fact that his hands were still flapping and he didn’t make eye contact, I spoke to Nick.

“Nick, this is Emily. She’s in Holly’s class this year. Can you say Hi?”

Nick, completely wrapped up in the excitement of the moment, ignored my request and continued to jump and screech with glee.

I herded everyone into the living room, which was adorned with cobwebs and Jack-o-lanterns. Holly and Nick were having separate birthday parties and Holly had been involved in every aspect of the party planning, paying special attention to the décor. “Mom, it can’t be too scary,” she had said. Some of my friends won’t like that.”

Sure enough, we had to remove a dangling skeleton for one friend and a furry spider for another before getting down to the business of tossing bones into cauldrons. Emily was in the corner crying. Tiny little Emily, in a house she had never been to, with grown-ups she had never met and a boy who had very confusing behavior. I crouched down next to her, and saw Holly watching me from across the room.

“What is it sweetie?”

“I want to go home,” she sniffled.  She was looking over my shoulder, nervously scanning the room. When she saw Nick, she visibly tensed and cried.

“Is it because of Nick?” I asked. She nodded.

It would be disastrous if she left the party before it even started. My heart ached for my misunderstood son and for my super sensitive daughter who would internalize her shame and anger.  And perhaps worst of all, Emily would leave not knowing “a Nick.”

“Emily, please stay. We have lots of fun things planned.”

“I want to go home.”

“Emily, will you do me a favor? Will you be my special helper? You can stay right by my side. Will you try? If you still really want to go, I promise we can call your mom.” She nodded. I needed to show her Nick, not tell her about Nick. The scary skeletons and spiders could be removed, but Nick was permanent.

Although my husband Brendan and I were both home, we had enlisted the help of our niece, Amanda for the party. She had been our go-to babysitter for the last four years.  The girls would be vying for her attention. In addition to being “young,” Amanda had beauty and charisma that rivaled the Disney stars the girls worshiped, and more importantly, she was a Nick expert.

Amanda was kneeling down helping one of the girls tie her shoelace when Nick came running up from behind, crashing into her with a big laugh. I pretended not to notice as I asked Emily to help me get the toilet paper ready for The Mummy Wrap. Just keep her close. Let her take it in.

Nick was playfully flicking Amanda’s hair and anticipating her response. She finished with the shoelaces and then reached around and grabbed Nick into a half hug, half tackle while her fingers disappeared under his chin and he laughed his infectious hearty laugh.

In groups of three, the girls raced to be the first team to use all their toilet paper to completely mummify one member. While Emily was safe inside the winding spirals of two friends’ rolls, I waved Brendan over. “Emily is afraid. Can you keep Nick happy, but on the outskirts as much as possible?” I whispered. “I don’t want her to leave, it will be so upsetting to Holly.”

The only problem I could foresee was if Nick wanted me and only me, which happened sometimes. In that case, he would zero in on me like a drone set on its strike zone. He would relentlessly pull at my arm and make loud vocal demands, until I either gave in, or Brendan removed him kicking and screaming. But for the moment Nick was happily ensconced in the chaos of the party.

Once all the mummy wraps had been cleaned up, Emily and I led the giddy girls into the kitchen where those who dared stuck their hands into dark holes to feel zombie brains, witches’ hair and frogs’ eyes. The girls squealed with disgusted delight. Nick came bounding in, grinning ear-to-ear and shrieking before running back out. Emily barely flinched. She had her hand inside a hole, no doubt wondering about the authenticity of what was dripping through her fingers as she squished it.

The girls gobbled up the bread stick “fingers” dipped in pizza sauce before the graveyard cupcakes. As they ate, Amanda summoned them to the living room for Halloween Bingo. I was back and forth from the dining room to the kitchen, clearing plates and getting drinks, until all the appetites were satisfied and all the chairs were empty, including Emily’s. Yay Emily! I exhaled. She had scooted off with the other girls, no longer needing me at her side.

Nick ping-ponged in and out of the rooms, with various levels of excitement; exhibiting the same behaviors that were novel before and which were now “just Nick.” When the front door creaked open for the first parent collecting her chocolate faced, party weary girl, Nick came running. Danielle, who was a regular at our house said goodbye to all the girls, and then turned to Nick with her hand up, “High five?”  He high fived her as she left. When Emily’s dad came to the door, Nick came running once again. Nick and Emily were standing in the same spot where it had all begun a few hours earlier, but Emily wasn’t retreating. She was cautiously waiting. For what?

“Do you want to give Nick a high five?” I asked. She nodded. Nick smiled as she high fived him, and I whispered in her ear. “Thank you for staying. I’m proud of you”

That night after I tucked Nick in, I went into Holly’s room. She was sitting on her bed with a look that told me there was something on her mind. Her perfectly shaped lips didn’t turn up at the ends to smile and she had that lost-in-thought gaze, as if trying to solve a puzzle in her mind.

And then the invitation, “Mom?”

“Yes Holly?”

“There’s something bothering me. “

I had an idea where this was headed, but I waited.

“Emily was afraid of Nick at the party today.”

“I know sweetie.”

“It hurt my feelings.”

It had hurt mine too, but I didn’t tell her this.

“I understand, but remember, lots of people have never met “a Nick” before,” I said. “And Emily stayed even though she was afraid and by the time she left, she gave Nick a high five. That’s how things change, one person at a time.”

Holly pushed her long brown hair away from her face, and snuggled into her bed. I began to tuck her into her pink teacup-patterned sheets. She had outgrown both the color and theme of the sheets, but she hadn’t outgrown the ritual of being tucked in. First the sheet, then the blanket, and finally her down comforter. She would kick it all off before even falling asleep, but this was our ritual, and I would do it for as long as she would let me.

Jennifer Smyth is a work in progress. She lives in Fairfield, Connecticut with her wonderful husband and two amazing kids.

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