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Classifieds

Publication Date: Friday, March 28, 2003

With love and strength

When 6-year-old Shane Everson asks his mother, Cindy, to take him to the toy store, she knows what he wants and it has nothing to do with toys. He'll want to walk down a certain aisle, go to the restroom, walk down another particular aisle, watch the automatic doors open and close, and then he'll want to leave, Cindy explained.

His brother Joseph, 3, has a different obsession. "If he comes upstairs and the neighbor's garage door is open, he will scream and sometimes bang his head (against the window or wall)."

A casual observer may be hard pressed to tag either boy with a developmental disability. Both are a picture of childhood innocence, with cherub cheeks and bright, soulful eyes framed by long curled eyelashes. But they do have a disability. They both have autism.

"Any other kid would be excited about going to the toy store," Cindy said. "They wouldn't pay attention to how you're getting to the toy store. But Shane would know. At an earlier time in his life, when he was 3 years old, it was like it was almost emotionally distressing to him. It's not going to the toy store, it's how you get there. It's an obsessive thing for him."

It is this obsessive-compulsive behavior that is one symptom of autism.

Autism is a neurological developmental disability that causes deficits in four major areas: language and communication, behavior, sensory and social skills, Cindy explained.

Shane obsesses about a lot of different things, say Cindy and her husband Eric. Certain videotape cassettes must be upstairs in their house while others must be downstairs; Shane wants to go through certain doorways when he leaves the school building; he insists on a specific route to school; and he will repeat nonsensical sounds and movements.

Joseph has fewer obsessive characteristics, but one is garage doors. This includes the ones he observes through the windows from inside their home, Cindy said. "When the door finally closes, he's so ecstatically happy. He is beaming from ear to ear, like someone just gave him the best present in the world."

The autism world can create a communication barrier. Shane did not start speaking until he was 4 years old, uttering "Da-da" much to the delight of his parents. And Joseph, who will be 4 in July, has a limited vocabulary of words such as "ball" and "bubble."

Both Shane and Joseph are strongly affected in the social skills area. "They don't know how to play with toys. They don't know how to have social relationships with other kids," Cindy said. She recalled an example that she once heard: Unless the child already has a relationship, a peer might as well be a tree. "It's not that he doesn't know you're there," she added. "They don't have peer interaction."

Recently, Eric and Cindy enjoyed what they called a milestone with Shane. Several friends were at their house and Shane wanted to watch "Blues Clues," his favorite video, and the other children wanted to watch the movie "Ice Age." Cindy gave Shane a choice between going to her bedroom and watching his videotape or staying with the other children and watching theirs. He chose to stay.

"It was a huge thing for him to chose a movie that he didn't even want to watch and stay with his friends, even though he doesn't interact with them," she said.

Cindy and Eric believe early diagnosis is a key to helping autistic children realize their full potential. Shane was diagnosed when he was about 2 years old. The couple saw early signs, but did not recognize them for what they were. At first they thought Shane had a physical problem, Eric said.

"We were new parents and didn't know any better," he said. "He was very weak. Barely able to roll over and sit up. Physically he wasn't progressing."

Neurological tests continued periodically and by the time Shane was close to 2 years old, the doctors began asking a new line of questions: Does he point? Does he wave bye-bye? Shane was not behaving like a normal 2-year-old; he was not imitating or playing.

The couple was aware there was a 3 percent chance that a second child of theirs might also have autism. "At the time it sounded real low," Cindy said. "But when you think of it, 3 percent, that is three out of 100."

"We wanted so much to have the normal parent experience," Eric added.

But the couple is not regretful. "We're optimistic people. We felt we wanted a second child," Cindy said.

When Joseph was born, the couple monitored him carefully. "We were watching Joe like crazy," Cindy said. And for a while, he appeared to be normal.

"I still remember the phone call at work," Eric said. "(Cindy) said, 'I think we're in trouble.' She was in the kitchen with Joe and he was screaming like crazy. She noticed one of the kitchen cabinets was open, so she shut it - and he was fine." Joseph was about 14 months old.

A happy couple who occasionally finish each other's sentences, Cindy and Eric cope well with their challenges and they are realistic about their family's future. The boys may never play baseball or soccer and will probably always need Cindy and Eric. The couple may never see their sons go to college, date, get married or have children.

"We might not ever face those kinds of milestones, but we do have milestones," Cindy said.

One milestone was teaching Shane to chew, which he did not know how to do until he was 4 years old. "It could take an hour or more to feed him, to teach him to chew," Eric said.

"That was one of our most frustrating things with him," added Cindy.

Nothing is taken for granted; every word spoken is a victory. "We took six months to painstakingly teach Shane to say the word 'up,' whereas with other kids, it just pops out of their mouth one day," said Cindy.

In addition to constantly working throughout the day with their sons, the Eversons have tutors who work with Shane and Joe for four and five days a week, respectively, as well as speech and occupational therapists. One of the family's triumphs is having both boys in school: Shane attends public kindergarten with the assistance of an aide, and Joe is in preschool.

Parents like Cindy and Eric, with the help of doctors, struggle day by day to help their children learn to make the most of their lives. With parental love, they look to the future.

"I go to work every day and have a fear in me to try and bring home as much money as I can," Eric said. "I have to go on business in San Francisco and New York and see a lot of panhandlers on the street. A lot have serious mental issues. I am in fear that when Cindy and I are gone my kids will be one of these people. Who's going to take care of them?"
Autism: what and why?

The cause of autism is unknown. The Everson boys are two of an escalating number of children annually diagnosed with the disorder. Nationwide from 1998 to 2001, the number of severe autism cases doubled from 8,700 to 16,000, said Dr. Lynne Mielke, a Pleasanton psychiatrist specializing in autistic spectrum disorders and also a parent of an autistic child.

That number does not include all of the less severe cases, Mielke added. In California alone 10 children are diagnosed every day with the disability and there is no known cure.

There are theories about the causes, but none is proven. Some theories include a genetic predisposition; mercury-laden childhood vaccinations, such as the measles, mumps and rubella (MMR) vaccine; or that a combination of factors, including genetic and environmental, cause autism.

One theory, Mielke said, is that children on the "autism spectrum" have metabolic deficiencies in their body's metals detoxification system, meaning they cannot eliminate metals introduced into the body through the air, food and water, and the accumulated metals damage the brain. Studies show that autistic individuals have excessive levels of metals, such as mercury, copper and zinc, in their systems.

It's a double hit: genetic predisposition and environment insult, Mielke said. Introduction of the metals can seem innocuous and come not only from vaccines but while in the womb. The fetus may be exposed to mercury from the silver fillings in the mother's teeth that seeps into her body system, or from the mother consuming water or fish contaminated with mercury, she explained.

Treatment is difficult. The usual recommended treatment consists of special education, and sometimes drugs to control autistic symptoms, Mielke said.

Mielke, a Pleasanton psychiatrist for 10 years, recently shifted her practice to focus on autistic children when she opened an autism spectrum clinic. As a parent, Mielke found herself exploring treatment options, which meant at times traveling outside California. Wanting to help other Tri-Valley parents with autistic children, she opened East Bay Development Spectrum Clinic. The clinic includes the assistance of Stanford pediatrician David Traver twice a week.

Mielke's bio-medical treatment begins after running a complex series of blood, urine and stool tests. From these tests, she evaluates at a cellular level how the body is functioning.

"There is a complex interaction between the brain, gut and immune system," Mielke said. "An abnormality in one affects the others." Treatment can involve diet, nutritional supplements and medication to help remove excessive metals from the body. Some children have benefited from a diet eliminating gluten (wheat, oats and grains) and casein (milk and its byproducts).
Spreading awareness

Like many high school students earning spending money, Amador Valley High School senior Lauren Frizzell babysat during the summer. And like most people, she did not know much about autism.

"I heard people talk about it but didn't know what it was," she said. Her first experience with it came when she cared for a sixth-grader with the disability. Later, an article about autism came out in Time magazine and she wanted to learn more.

As part of a senior course assignment, Frizzell researched and wrote a paper about autism. For her research, she contacted a local support group and met with a parent of a child with the disability, who provided Frizzell with more information.

From her research Frizzell learned: ¥ In the last 15 years, the number of California cases diagnosed with autism has quadrupled, "from 4,000 in 1987 to 18,000 today." ¥ 300,000 children and almost 1 million adults in the United States have some form of autism. ¥ Autism is five times and three times, respectively, more frequent than Down syndrome and juvenile diabetes.

Par4KidsSake

The Eversons' personal struggles inspired them last year to launch a fund-raising golf tournament to both raise awareness and funds for autism research. The second annual tournament will be held at Ruby Hill Golf Club on May 12 and includes a dinner, both a silent and a live auction, and a drawing. The funds raised will benefit the M.I.N.D. (Medical Investigation of Neurodevelopmental Disorders) Institute at UC Davis. The M.I.N.D. Institute is currently being expanded and once completed it will be the largest autism research center in the United States, Cindy Everson said. For tournament registration and sponsorship information or to donate to the fund-raiser, visit the Web site at www.par4kidssake.org.