FEAT of heroism

Kimberley McGee

Tuesday, Oct. 6, 1998 | 9:08 a.m.

Kris Silva, showgirl for the "Folies Bergere," lines her eyes in thick kohl, attaching the one-inch eyelashes before completing her stage makeup. Offstage, she wears none.

She pulls on her jeweled stage costume and high heels. Offstage, she wears simple dresses and sandals.

She prepares to glide on stage, poised, smiling -- effortlessly graceful. Offstage, she fights daily for her son to understand the world around him.

Silva's son Marley, now 5, was diagnosed with autism three years ago.

"This takes over your life," says Silva, co-founder of Families for Effective Autism Treatment, or FEAT.

Autism is characterized by little or no speech, eye contact or affection displayed toward others or objects, inappropriate or odd behavior and a sensitivity to touch, taste, smell or sound.

The nonprofit organization's goal is to provide Las Vegas families easy access to autistic research and information, tools for the intense therapy, the ability to share therapists and, most importantly, support. FEAT helps more than 20 local and regional families.

Recently, Silva has had Marley in intensive therapy to win her child back from the world he inhabits. He is a smiling, rambunctious tot who simply seems quiet and shy, careful not to catch your eye. In the beginning, she says, he had lost what communication he had and his eye contact was minimal. He is making progress, she says.

"The (therapist) said 'point to (a picture) of mommy,' and he pointed to me," Silva says, her right hand flying to her heart and her eyes slightly teary. "Before that I didn't even think he knew who I was."

The diagnosis

Silva began to realize there was a problem with Marley when he was 2rac/2 years old.

"My son would be playing and run right over other little kids, like they weren't there," Silva says, explaining that Marley does not take in outside stimuli as other kids do, so the kids "just aren't there" for him.

Another autistic trait is "stimming," in which a child will line up videos, cars, anything, she says "to stimulate their central nervous system because they don't get any outside stimulation," she says.

He began showing other symptoms. Words he had known began sliding from his memory.

"I asked him to put something in the trash and he forgot how to do that, just couldn't understand what I was talking about, even though he had done this just days before," she says. "This was our first child, we didn't know."

She took him for tests. "I started reading about what could be wrong and autism kept popping up, it made sense," she says. And the final diagnosis made her feel helpless, she says.

"My idea of autism was from an old high school documentary ... it was horrifying," she says. "They didn't want you to touch them or hug them. I was completely devastated that this was happening to my little boy."

As a graceful, 6-foot-tall dancer with long, dark brown hair and big brown eyes, it is not hard to envy this soft-spoken woman with the beautiful boy and supportive husband, Steven.

"But I would look at other families and envy them, to be normal," Silva says. "Sometimes I would wake up and sob. Everything you read about autism, there is nothing to look forward to, everything you dream for your child is absolutely gone."

Dressing up for Halloween, Little League, Christmas, "he doesn't get it," she says, and this is an especially difficult trait of the disorder for parents to accept.

Amid her research frenzy, she found a book entitled "Let Me Hear Your Voice" by Catherine Maurice, about a woman with two autistic children who, through intense training, pulled out of their world into society's mainstream.

"Everyone was saying you can't do anything about (autism), there was nothing hopeful," she says. "You're stuck. This book was the first thing I read that gave positive (suggestions)."

But the medical community she reached out to continually gave her simple answers about how not to expect much from her son, she says -- regardless of therapy.

"I decided to put him in a program, but there was nothing here in Las Vegas," she says.

Finding hope

Silva met Jan and Allen Crandy of Las Vegas, parents of then 3-year old Megan, also diagnosed with autism, on a flight to Portland to attend a conference on autism treatment. They were surprised that through all their parallel research and dealing with the same doctors, no one had put them together. The Crandys say they were just as determined as Silva to work with the disorder, not ignore it.

"We were typical parents, we couldn't see that there was anything wrong with our child," Jan Crandy says. Others noticed -- that Megan didn't play with other children, that she talked jibberish to her shadow in what her parents call "Meganese," that she echoed videos and would repeat Disney scripts to communicate. "We just thought she went to a beat of a different drummer," Jan Crandy says.

After the diagnosis, the Crandys set out to do all they could for their daughter. "If I don't do this, how can I ask my child to recover?" Jan Crandy says.

They found studies showing that constant therapy could reach a child.

They did not find much support in Las Vegas for families struggling to understand and overcome this disorder, Jan Crandy says. Together the Silvas and the Crandys created FEAT.

Starting to learn

The "tools" for the intensive and expensive therapy that FEAT provides acces to consist of flashcards, matching cards and photos for every imaginable object and emotion. The families rotate tools to keep the children learning.

Silva used the cast of the "Folies Bergere" to show hugging, brushing hair, eating and kissing. She has also lamenated pictures of a set of keys, a fork, an apple and other objects that an autistic child may know -- but not have the ability to say 'I want an apple' unless taught what each word means separately.

"You could say 'What is eating?' and she could show you but you couldn't say 'How do you eat' because (Megan) doesn't know the word 'How,' " Jan Crandy says. "Other kids learn from what they see, these kids don't."

"You've got to get down in their face until you reach them," Allen Crandy says. They feel that Megan's progress is due to intense, 40-hour-per-week therapy. "She's never been in the school district, we've had her the whole time. That's the difference."

Megan now verbalizes to communicate her needs, understands words, sentences and her place in her environment.

"Everything she knows, we have had to teach her," Jan Crandy says. Megan learned her colors on circles of paper. When the colors were changed to squares, she no longer related the word red with the red square. They began again.

She runs around, a happy little girl, seemingly "normal." But she is afraid of public restrooms -- "I think it's the echo," Jan says -- as well as showers and other areas of the world that overwhelm her.

"She is still afraid of birthday parties," Jan Crandy says. "We baked a cake today to get her used to that, but you can't even show her a pink box without her getting upset." She asks Megan if she wants a birthday party, but Megan looks wide-eyed at her mother and softly says "Nooo."

"She doesn't understand what it's all about, it's too much for her," she says. "As a parent, you want to celebrate her birthday -- but we have to let it go."

Giving support

When Marley was 6 months old, Silva and her husband had just moved in with Silva's mother, planning to buy their own home within a few months. Marley was diagnosed soon after and the family pulled together to support each other and look at options.

"It costs $40,000 per year for the therapy and traveling," Silva says. "We didn't have that."

Silva's mother came out of retirement and went back to work, opening her new home to her daughter's new family. Members of the "Folies" cast helped train Marley on the in's and out's of the world we take for granted.

"We talked about fund-raising (for Marley) and a candy store was the obvious choice," showgirl Lucy Boling says. The showgirls put their heads together and came up with raffles and prizes donated by community organizations and other production shows. Then they began to sew.

"We had an assembly line going," Boling says. "We'd piece a chair-back together in 10 minutes, all of us working." Chair-backs and slipcovers with pouches for the back of makeup chairs were sold to dancers in other shows and were a big hit. Boling got more involved.

"I know what it is like to have a healthy child and I can't help but compare that and think, 'How lucky,' " she says.

Before working with Marley, she says her life after being a showgirl was still up in the air. "I had no idea what I wanted to do," she says. "After being able to work with Marley and get results, I have the confidence to go back to college, maybe into special education."

The struggle

Silva has turned her home into a school for Marley. Along one wall is wood shelving with plastic boxes labeled for each of the behavioral programs. He is taught about eating -- although he knows how to eat, he cannot associate the action with the words. They keep working with therapists.

"Sometimes I just look at him and wonder, 'what could he be thinking? What is he experiencing?' " Silva says.

During a lesson, a therapist uses a commanding voice, making him repeat clapping, or touching his nose to get him back on track. Marley gives the therapist a hard time, his eyes drifting to nothing in particular, seemingly somewhere else.

A piece of bubble gum is produced and promised if he cooperates. He becomes aware, focused. The therapist flashes cards with words. Marley is quick to recognize them. His pronounciation is clear and complete.

Silva admits that Marley may not get well. At her dressing table backstage at the Tropicana's Tiffany Theatre, she has pinned up pictures of angels, a collage of Marley with "Healing" pinned across the middle and another collage with "Healed" gingerly pressed to the bottom. A white candle stands atop her jewelry box.

"The people in the show do meditations (for Marley)," she says. "It helps a lot."

She has good days and bad days. If, she says, he does not get fully acclimated to the world, she hopes he stays in his world -- where no one can hurt him and he is genuinely happy.

archive