Shrouded in mystery with no cause or cure, autism grabs hold of its victims at an alarming rate. While one in 10,000 children was diagnosed with the developmental disability 15 years ago, that number has risen to one in 150 children. Many families’ only choice is expensive behavioral therapy rarely covered by insurance. The stress and uncertainty of having a child with autism takes its toll on families, often leading to exhaustion, frustration and a sense of isolation. The Ellis family of Decatur is one of those families.

In Her Own World

By Danielle Komis Palmer

 

“Five-six-seven-eight!” the tap dance teacher counts.

Ten sets of eyes watch the instructor. Ten sets of feet tap to the beat.

Except one.

Nine-year-old Brayden Ellis sits in the corner of the room in her neon green and black spandex dance outfit, her expression pained, her right hand clutching her right ear. While her long legs and tap shoes tapped loudly in unison with her teacher in an earlier session, now they are stubbornly still and silent.

“Brayden, don’t you want to dance with us?” asks teacher Jennifer Erickson.

Brayden ignores her, instead shrieking her usual refrain: “Bye-bye! OK! Let’s go!”

In the hallway, Brayden’s mother’s heart sinks. While Brayden actively participated in dance class last year, lately it’s been a different story.

When your child is autistic, you quickly learn that few activities are guaranteed. Even the ones you always dreamed your little girl would take part in, said mother Wendy Ellis.

“It’d be so much easier sometimes just to quit,” she said. “I’m envious of all the mothers with their daughters on the competition teams dancing who can go in there so easily and do it when it’s just such a chore for us. But it’s worth it. It’s good for her, so it’s worth it.”

Autism prevents Brayden from focusing, talking and socializing like other children her age. She does not recognize danger, and usually seems to be in her own world — singing to herself and often ignoring other people. Her family must watch her carefully to ensure she doesn’t run away, like the time she became transfixed with the waves in Point Mallard’s wave pool and the lifeguards grabbed her before she dived in. She also will run into the street to dance with her shadow.

On the wide spectrum of autism that ranges from mild to severe, Brayden is one of the lucky ones. Though she will rarely initiate conversation, the girl talks, laughs and loves to be hugged. She also attends school with non-autistic children at her third-grade inclusion class at Somerville Road Elementary, where she receives behavioral therapy. She knows her multiplication tables and often aces her spelling tests.

“Autism is a guessing game from beginning to end,” Wendy said. “There’s a lot of guilt that comes with this. You wonder if you’re making the right choices for her. You’re scared not to try everything.”

Those fears began as soon as Brayden was diagnosed at two and a half at Vanderbilt University Medical Center in Tennessee. The Ellis family had no history of autism.

A family effort

Despite Brayden’s abilities, keeping up with an autistic child is exhausting. Wendy usually spends her Mondays recovering from weekends with Brayden, while her husband John is coaching their 14-year-old son Brad’s travel baseball team or transporting 17-year-old Brett’s band equipment to gigs. John works as an electrical engineer for a weather technology company in Huntsville, while Wendy is a stay-at-home mom.

Living with an autistic family member requires a group effort, the couple said.

At the family’s home, gates must be locked, toothpaste must be kept out of reach, and someone must watch Brayden at all times. At night, the Ellises lock the girl’s split bedroom doors her father built out of stairway spindles, which allow someone to check on her. When they travel for family vacations, the first thing they do is head to Radio Shack to buy alarms that hook on every door.

The family avoids malls, parks or any other place where Brayden may eventually have a “meltdown” and cause a stir.

“Generally, if she doesn’t get her way, it becomes a scene,” John said. “And other people don’t have a clue.”

Wendy often calls her boys “Little Dads” because of the protective, fatherly role they take with their younger sister.

“You’re almost put into a position where you have to choose this child or that child,” Wendy said, noting the sacrifices her boys would have to make if they decided to transfer Brayden to a private school for the autistic.

A private school would likely cost about $2,000 a month — an expense that would come out of the family’s pocket.

Despite the difficulties, the boys support their sister. Brett wrote a song for Brayden that is often performed at autism fundraisers and Brad already plans to care for his sister in the future.

Fascinating girl

Many times the family doesn’t mind the games or Brayden’s antics — in fact, they often lighten the mood.

“Brayden is a pure joy in our life,” Wendy said. “She is the happiest child I know. She doesn’t have a lot of the worries my other kids have. When my other kids are sick to their stomach the night before school, it doesn’t bother Brayden at all.”

She paused for a moment, thinking. “I guess we do her worrying for her.”

The bright blue-eyed girl with the earnest smile adores children’s TV characters Barney and Baby Bop, along with stylish shoes, her computer and performing.

Dressed in a teal tank top and striped pajama pants, Brayden happily danced recently at her Decatur home for her mother and brother Brad. Her family is used to watching or taking part in the shows she performs in the living room, where the floor-to-ceiling curtains create her stage.

After Wendy grandly announced Brayden, the girl threw open the curtains and her clear, high-pitched voice began to sing one of Baby Bop’s songs. Confident and charming, she looked like a mini vaudeville performer as she sang, stopping only a few times when she became transfixed with her reflection in the hallway mirror. Brayden grinned blissfully when her captive audience clapped enthusiastically.

“These are the sort of things we end up doing around here,” Wendy said, shrugging helplessly but smiling.

Uncertain future

The times when Brayden connects with the outside world make her irresistible to family, teachers, and children at her school. Peers argue over who will meet the girl at the car to walk her into school. Dance teacher Jennifer Erickson held back tears last year when she presented Brayden with her three-year dance award.

While Brayden’s sweet disposition and carefree attitude create her lovable personality, those traits also worry her loved ones. What will the future hold for this child who loves Barney though her classmates now eschew him, who loves being read to just to hear “Once upon a time” and “The End," who doesn’t grasp the concepts of danger or evil? Her childlike nature suits a 9-year-old, but will it prompt cruel comments when she gets older and faces middle school cliques? Will she ever have children, marry or hold a job?

With so little known about autism, the Ellises have learned they can hope only cautiously. The good news that Brayden will soon get a service dog — a relatively new way of helping the autistic — has brightened her mother’s hopes significantly. She prays it will let her take Brayden to the park or venture into the mall, where she hasn’t stepped since her little girl was in a stroller.

Dance class

Back at dance class, Brayden slowly draws out of her shell.

As the upbeat Hannah Montana dance song slows down, she glances around the studio from her spot in the corner. Quick as a mouse, she darts onto the floor, using her skinny arms to slide her bent knees across the floor. As the last notes of the song play, Brayden seamlessly fits into the last dance formation with the other children.

Grinning widely, she hits her pose on cue.

It is hard to tell she ever missed a beat.