Written by Malinda Just Wednesday, 09 April 2008 07:50
Sheldon Wiens, son of Brad and Jane Wiens of rural Hillsboro, was diagnosed with autism, a brain disorder that affects a person’s ability to communicate, relate to others and interact with surroundings, when he was 3 years old.
Now 14 and anticipating his driver’s license test, Sheldon fits in with his peers and is well-liked and well-respected in his Hillsboro Middle School eighth-grade class.
But the road hasn’t always been so easy.
The early years
Even when Sheldon was an infant, Jane Wiens remembers he colicky for nearly a year.
And even though all the developmental milestones were on track, Wiens thinks the autism was already taking shape.
“I believe that when he was a baby, something was already happening then,” she said.
When Sheldon was 3, Wiens said there were two components that led the family to believe something was wrong: Sheldon couldn’t follow instructions and he exhibited repetitive language.
“It was not that he was being defiant—it was a different kind of following instructions,” Wiens said. “He just didn’t hear you. We thought there was something wrong with his hearing.
“The other thing was when we told him, ‘Sheldon, tell grandma and grandpa goodbye,’ and he said, ‘Sheldon, tell grandma and grandpa goodbye.’ He never just went over and said, ‘Bye, grandma.’”
After confirming that Sheldon’s hearing was OK, the Wienses were referred to a developmental pediatrician in Wichita who diagnosed Sheldon with autism.
“I remember her saying, ‘He’s autistic, but don’t worry about it because it’s very mild,’” Wiens said. “I thought, ‘Oh, wait, what’s autism?’ We didn’t have a clue what that was.”
The learning process
After the diagnosis, the Wiens family decided to get some help.
Because autism affects each child differently, the Wienses had to discover Sheldon’s specific needs. Sheldon struggles with social conversation and dialogue.
“He’s a very visual person,” Wiens said. “It’s not necessarily the vocabulary—it’s putting the whole picture together. It’s not vocabulary and it’s not intelligence. It’s a disability in language.”
The family traveled to the National Academy for Child Development in Arlington, Texas, to get curriculum for Sheldon.
“To figure out the educational stuff, it has to come right away,” Wiens said.
But implementing the curriculum was intense.
“I remember feeling really overwhelmed with the curriculum from Texas because it was so comprehensive,” she said. “I was thinking, ‘If I don’t get all this done in a day’s time, I’m going to fail.’”
In most cases, parents with an autistic child have higher stress than parents who don’t have a child with the disability. During the early years of Sheldon’s diagnosis, Wiens was also diagnosed with chronic fatigue.
“I was so stressed,” she said. “I was so overwhelmed.”
But she also said their family was lucky.
“Parents sell their homes,” Wiens said. “They put second mortgages down. They have applied behavioral analysis that costs thousands of dollars to do. We didn’t do any of that.
“We have it so good,” she added.
Despite the cost, Wiens said it is good for parents to be involved with an autistic child.
“These parents do everything they can because they know that, really, once you get involved with the child and look at what they need, they do respond to it,” she said.
The Wienses continue to be involved with Sheldon’s school curriculum, going to meetings to develop an individual education plan for Sheldon.
For example, because Sheldon is a visual learner, graphs and charts are a helpful tool for his education.
Wiens said the intensity of living with an autistic child has drastically lessened since diagnosis.
“The intensity is at the very beginning, and then you try to normalize things,” she said.
Wiens said some intensity comes from constantly teaching the same thing.
“Sheldon used to be obsessed about the button in our garage that would push the door down,” Wiens said.
Sheldon would constantly wonder if every garage had a button and would ask others, “Do you have a button in your garage?”
“So that was the obsessive part,” Wiens said. “All that is intense until he figures it out and learns there are other subjects to talk about. Now he laughs about what he used to say. So now, there’s not the intensity at all.”
Also a part of normalization for the Wiens family was to include Sheldon in the daily activities of the family.
“We just fit him in our family and tried to normalize things as well as we could,” Wiens said.
Advice for parents
Wiens said the most important thing for parents coping with an autism diagnosis in their child is to find support.
“A parent whose child is diagnosed with autism needs support immediately,” she said.
She said parents need a place to have support, whether it’s another parent experiencing a similar situation, someone watching the child so the parents can get away, or having the child spend time with peers.
“Having other kids involved with my child was the best thing,” Wiens said. “It normalizes things.”
She also said parents should be careful to not become overly focused on the child.
“You could spend hours and hours away from your other kids just trying to figure out what to do,” she said. “There has to be a place where a parent can say, ‘I’m doing as much as I can,’ and not get so consumed by it.”
Wiens said community involvement with children with disabilities is essential, and also biblical.
“I really believe God wants us to care,” she said. “We must be involved with the weak and the elderly, those who are in need.”
Wiens said the community’s response to the parents and to the child goes a long way in providing normalcy.
“It’s great when you have parents out there who say, ‘Hey, Sheldon, how ya doin’?’” Wiens said. “They’re not scared of talking to us. They’re not scared of talking to Sheldon as if they don’t know what to say.
“The best thing the community can do is support the parents and support—not be scared of—these kids,” she said. “These are the kids we need to be involved in because they actually change us.”
Having a child with autism has been a powerful experience for the Wiens family so far.
“We would never change what we’ve experienced,” Wiens said. “We wouldn’t go back and say, ‘We want to have somebody different,’ because the lessons we’ve learned along the way are so valuable.
“I think God brought him to us so we would be changed people. It just expands our horizons.
“Everything I’ve learned with him I’ve taken a little bit further and expand it with everybody else around—and that’s valuable.”
Autism: What is it and what causes it?
Today, one in 150 people are diagnosed with autism, a brain disorder that affects development.
With the high rate of diagnosis, autism is more common than pediatric cancer, diabetes and AIDS combined.
No racial or ethnic social groups are left untouched, but the disease is four times more likely to strike boys than girls.
There is no cure for autism.
What is autism?
Austism is characterized by impaired social interaction, problems with verbal and nonverbal communication and unusual, repetitive or limited activities and interests.
How is autism diagnosed?
Doctors use a core group of behaviors to help identify autism. Symptoms can range from mild to severe. The behaviors are:
Impaired ability to make friends with peers.
Impaired ability to initiate or sustain a conversation with others.
Absence or impairment of imaginative and social play.
Stereotyped, repetitive or unusual use of language.
Restricted patterns of interest that are abnormal in intensity or focus.
Preoccupation with certain objects or subjects.
Inflexible adherence to specific routines or rituals.
What causes autism?
Scientists are unsure what causes autism. It is likely that both genetics and environment play a role.
If you need local assistance…
Parents as Advocates for Individuals with Disabilities of Marion County is a group of parents whose focus is to meet the educational needs of children with developmental disabilities. The group also provides support for parents.
PAID of Marion County works to:
Empower parents to assume the role of expert of their child’s education through advocacy training.
Develop work-related opportunities within Marion County, whether through organized workshops or employment in established businesses.
Educate the community of the various special needs and how they can be a positive influence through various activities and responses.
To increase community involvement by creating opportunities for social/recreational activities with children/adults with developmental disabilities.
For more information about PAID of Marion County, contact Jane Wiens, 620-947-2402.
Workshop planned for May 31
The third-annual Autism Spectrum Disorders Workshop is being offered for families and friends of children in the autism spectrum from 8 a.m. to 4:30 p.m. Saturday, May 31 at the Courtyard by Marriott in Junction City.
The event is hosted by the Pilot Club of Manhattan and will feature informative speakers as well as time to network with other families.
The keynote speaker will be Temple Grandin, an accomplished and well-known adult with autism.
The event will also include a variety of topics in break-out session format. Topics will include: Autism 101, transitioning, applied behavioral analysis, sensory integration, individual education plans and more.
For more information go to www.pilotclubofmanhattan.org, email email@example.com or phone 785-485-5526.