Wednesday, March 15, 2008

A Walk for Autism

After their young cousin was diagnosed, two Belen sisters organize

Jackie Schlotfeldt News-Bulletin Staff Writer; jschlotfeldt@news-bulletin.com

Belen     Good things can come from bad news.

    When a young boy named Zachary was diagnosed with severe autism, two young Belen sisters didn't waste any time in trying to find a way to help their cousin and bring the issue of autism to the attention of people closer to home.

    Up until their family was directly affected, the girls didn't know a thing about autism, but once they did, they hit the ground running. Although their cousin lives in Florida, they are determined to make a difference, not only in Zachary's life, but also in the lives of the people in their community.

    Elizabeth Sluder, 17, and sister Erica, 12, decided they wanted to draw awareness to autism and bring to light what people can do when faced with a loved one being diagnosed with the disorder.

    "There is so little known about autism," Elizabeth said. "We weren't sure what we could do to help, but my mom gave us the idea to hold a walk for autism."

    The girls' mother, Cyndi Sluder, said the goal is to bring information to the valley and reach out to families who are dealing with autism.

    "I'm really proud of them," Sluder said of her daughters.

    Zachary's story

    Kenneth and Dawn (Graves) Berge and their two children, Carson, 4, and Zachary, who will turn 3 in April, led a pretty normal life up until the day that Zach was diagnosed with severe autism. Then their world turned upside down.

    It was April 11, 2007, when they finally got the news that explained a lot of the regression they had seen in their son after he had received his round of vaccinations at 16 months old.

    "He stopped talking completely and acted like he couldn't hear anyone," Berge said. "He was completely in his own world, and he stopped engaging with his sister and everyone else, including myself."

    Berge said they had tubes put in Zach's ears, thinking that his hearing could be the problem, and that seemed to help some, but he displayed other characteristics such as running around wildly, squealing with absolutely no direction.

    "I used to think it was cute, and it was his way until he was diagnosed," Berge remembers. "Then I started reading and researching and found this was a typical characteristic of a child with autism."

    Wasting no time, Berge and her husband began seeking information and treatment for their son, and in the year since Zach's diagnosis, they have learned more about autism than they ever could have imagined.

    While Berge says she believes the vaccinations played a part in her son's autism, she's not anti-vaccine but thinks the inoculations shouldn't be given at one time.

    "I think there's a safer way to administer vaccines but it's convenient to do it (four at a time) in this country," she said.

    Berge went on to say that there are a number of theories about what causes autism, including genetics, environmental toxins and vaccinations but there aren't any real answers as to what triggers the disorder.

    A typical day in the Berge household is filled with therapy appointments for Zach, many of which take an hour or more to get to because they aren't available in the community where they live.

    Three times a week, Zach is engaged in Applied Behavior Analysis, ABA, which is a learning approach that helps children learn to form sounds, words and finally sentences, as well as behavior therapy that teaches him how to play with other children, Berge said.

    He also has speech and occupational therapy in addition to vitamin and diet therapy. Another treatment Zach has received is hyperbaric oxygen therapy, which helps increase the blood flow and oxygen to his brain. So far, Zach has had 32 such dives. Berge said the hyperbaric oxygen treatments are very expensive and insurance doesn't cover this type of therapy.

    In fact, she said, insurance will pay only for speech and occupational therapies, for which the family is responsible to pay a portion.

    "It has been a life-changing experience for all of us," Berge said. "I can't say that it has been easy, but I have met some incredible people and have been fortunate to watch their children be healed and to be inspired by them."

    Zach has been in treatment for a year now, and Berge said he is doing wonderfully and is starting to talk, saying about 20 words that are pretty clear. Even though the progress is slow, they are seeing progress. She said it's easy to get discouraged but she wants parents to know it does get better.

    "I've been told it's a marathon, not a sprint," Berge said.

    Autism statistics

    Dr. Cate McClain, director of the Center for Development and Disability at the University of New Mexico, has been working in this field for the past 16 to 17 years. She said one of scientists' goals is to further the development services available for autism.

    McClain said that the number of children diagnosed with autism has risen, with approximately one in 150 now having an autistic spectrum disorder.

    "The numbers have gone up quite dramatically," McClain said. "Every 20 minutes, a child is diagnosed with autism."

    McClain explained that there is a controversy about whether the number of children diagnosed with autism has increased at the rate it appears or it if it's related to diagnostic criteria, which are broader than they were many years ago.

    "Clinically, it appears to me to be a combination of factors and the numbers have gone up," McClain said.

    Autism is the second most common developmental disability, surpassing juvenile diabetes, cystic fibrosis and leukemia combined. While no direct cause is known, McClain said genetics play a role, and although there is no specific gene, there are a number of genetic markers identified and families with an autistic child are at a higher risk to have another child diagnosed than a family that doesn't.

    "The current thought is a child is conceived with a predisposition to autism," McClain said. "Then there is some sort of trigger that expresses the autism. We don't know what that trigger is."

    Some parents report differences in their child right after birth while others slowly notice a change occurring, McClain said. Other parents report a regression in development after immunizations but researchers have not been able to scientifically connect it to that.

    "It's hard to diagnose before the age of 2," McClain said. "One-fourth of children have a pattern of developing normally, and then they lose those skills and nobody knows why."

    What is important is to get early treatment for your child in order to maximize a child's behavior, the doctor said. And there are a number of beneficial treatments for children with autism, including speech therapy, occupational therapy and Applied Behavior Analysis (ABA). There are also numerous alternative therapies that some parents believe have made a difference in their children's development.

    Diet and vitamins are an area that some parents believe has made a difference with their children, and although McClain said there is no scientific evidence, it clearly can help make a child with autism more comfortable and help with their growth. The gluten-free casein-free, GFCF, diet is a diet free of dairy and wheat products.

    "It's a tough diet to follow, and depending on the family and the family's food patterns, some can follow it easily while for others it's tremendously hard," McClain said.

    McClain went on to say that some children with autism have gastrointestinal issues but most don't, however, it's not at all unusual for them to have all sorts of eating issues.

    "It doesn't mean you can't try different things," she said. "Every child is different."

    McClain said autism affects the health and education systems and there are multiple state agencies working on the issue. While they aren't working towards creating a segregated facility in New Mexico, they are trying to coordinate services statewide.

    "Multiple things have to happen," McClain said. "A huge part of what we do is diagnosis and training professionals and parents in the area of autism. Many are diagnosed in the field and then they come to us."

    A family speaks out

    Pavlos and Nicki Panagopoulos of Rio Communities know the hard work that goes along with raising a child with autism.

    Their middle child Patrick was diagnosed at age 2 and a half, and he too has been receiving intensive speech therapy and occupational therapy at school.

    "He's in a regular class and has an aide for support so his teacher can focus on teaching," Nicki said. "Sticking him with typical kids is the best therapy, and Rio Grande Elementary has been wonderful. They walk on water to me."

    Nicki said that, at about 16 months, Patrick stopped talking. They had just had their third child, and they wondered if maybe it was a reaction to the new baby.

    "He would spin, and when we'd say his name, we wouldn't get a response," she recalls. "We had suspicions so we did a hearing test on him. By the time he was two and a half, we were clear on where we were going."

    Nicki went on to say that if parents think anything is amiss with their child, they should contact and talk with their physician because, the longer you wait, the harder it is to catch up.

    "There is hope," she said. "You can make it better."

    Nicki has been involved heavily in bringing awareness about autism to the public, and she is working with the people at UNM to bringing a center for excellence in autism to New Mexico.

    "We're one of five states that don't deal with autism over a person's lifespan," she said. "It will cost society two to three million to get (a child with autism) through their lifespan and when a child is 18, if they don't have supportive employment and educational environments that work, they won't be employed and it will be a drain on social services."

    She said early intervention is critical.

    "We're lucky," Nicki said. "Patrick is responding to treatments."

    Nicki cautioned that some people have spent $40,000 to $50,000 on treatments and the problem you have when you have a child who has been diagnosed with autism is "you're like a drowning person and you reach for any arm to catch on to. But many can take advantage because there is so much information in the beginning.

    "That's why we've been so open. We hope we can help other people on this journey. We don't want kids to not succeed because of economics. All the money won't cure a child. For us, it goes on forever."

    Characteristics of autism

    Children can display a multitude of behaviors that are associated with autism as well as other behavioral disorders, and there are some things parents can watch for.

    The New Mexico Autism Society says not all children display every characteristic associated with the disorder, and they can vary in degrees, depending on where the child falls within the autism spectrum.

    Some signs that may point to autism are: lack of eye contact; a delay or regression in speech; repetitive movements like rocking, spinning or hand flapping; preoccupation with a certain activity or object; resistance to changes; different levels of activity ranging from really high to really low; liking a routine schedule and often being upset when there are changes; in addition to a lack of interaction with others, to name a few.

    The walk for autism

    For months, Elizabeth and Erica Sluder have been working to organize a walk for autism in Valencia County, They have contacted legislators to help with their cause, and Erica is also trying to reach movie stars, such as Julia Roberts, to try and bring a little "celebrity" to the walk that's planned for April 5 at the Belen High School track. She is also trying to get Miss New Mexico to attend.

    Another thing that is special about the date planned for the walk for autism is that it is also Zach's third birthday.

    "We're not sure how much money we can raise, but we hope it's a lot," Erica said smiling.

    The money raised will be used in part to help with Zach's expenses and in part for families in Valencia County. Cyndi said they had researched national organizations but they wanted to keep the funds raised locally to help those in the community so they are working to set up a way to do that so those in the community can benefit from the proceeds.

    "We didn't want it to go to a huge organization where we wouldn't see the results," Cyndi said. "We want to get the families and the faces of Valencia County so people have a connection and give them some hope."

    The girls' aunt, Dawn, said she is amazed at what her nieces are doing to draw awareness to autism, and she hopes that others will be moved by Zach's story and ultimately it will help other families in the same situation.

    "I'm just so touched," she said. "At their ages, they could be more concerned about themselves and here they are trying to help others. They think this is the right thing to do. It's so admirable to me."

    Nicki agreed the walk will help raise awareness, and she said it is touching that Elizabeth and Erica want to do this for their cousin.

    "The first few years are so hard, and at times you regress emotionally," Nicki said. "The girls are letting their aunt know they care. If we could all just do a little something, it would help."

    Nicki said raising a child with any disability is expensive and most is not covered by insurance.

    "It's all about helping people have a quality life," she said.

    Dawn said if you notice something is wrong, don't take no for an answer but get your child checked out and diagnosed so you can begin treating your child early.

    "Get them help and do your research," Dawn advised. "No one will hand it to you."

    The walk for autism will be held from 8 a.m. to 1 p.m. on Saturday, April 5, at the Belen High School track. The girls said they are looking for any walkers to help raise money as well as donations from community members to help with the event.

    "Even if it's just prayers," Erica said. "It's amazing to think of the possibilities. I always like to think of the grander things."

    "We're trying to help people of Valencia County," Elizabeth said.

    "And Zach too," Erica chimed in. "We want people who deal with autism in their lives to contact us."

    Families who have children with autism are invited to contact the girls by writing them at P.O. Box 1927, Belen 87002, by e-mail at sluderfam@yahoo.com or by phone at 864-6465.

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