Sunday, April 5, 2009
Resources available for families dealing with autism
By ANDREA CALCANO CRUZ
News Chief correspondent
Published: Sunday, April 5, 2009 at 4:01 a.m.
Dubbed a "puzzling" disorder, the growing occurrence of children diagnosed with a form of autism, a lifelong developmental disability, presents challenges not only for the children on the spectrum, but their families as well. With early intervention, support and awareness, those challenges can be minimized and those with autism can lead fuller lives.
In Polk County, resources exist to help families cope with and learn more about how to help their autistic children. April is National Autism Awareness Month, and with incidences of children diagnosed on the rise, a few local families opened up to share their experiences of living with the developmental disorder.
"Cory is very happy and funny - he asks if he can be a little boy again," said Cory's mother, Dawn Van Meter. Preferring the term "differently-abled" to describe her son's challenges of living with autism, Van Meter said it's difficult for Cory, 16, to understand he is growing into a man and cannot be boy again.
Residents of Winter Haven, Van Meter and her husband, John, first began to suspect something was amiss with Cory's development after his first set of shots at the age of two months. All of a sudden, the infant, once alert and holding his head up, could no longer fully lift his head.
"(His head) stayed cockeyed for at least six weeks to eight weeks," Van Meter said, "but then he kind of came around, he could lift his head again." Her concern dismissed by the doctors as a crick in the neck, Van Meter said she believed them; being a new mother, she had nothing with which to compare the situation.
After the cockeyed head corrected itself, Cory developed fairly typically, Van Meter said, and his milestones seem to be fine. He walked when he was 12 to 13 months and began babbling on time.
"He said 'Mamma' and that was pretty much it until around 18 months or so. It just went to gibberish and it seemed like he was making more sounds, but they were all guttural," Van Meter said. She said again the doctors assured her that boys develop slower than girls and she shouldn't worry.
"Then we had our daughter and Cory was about 30 months, and just before he turned 3, she was already saying (Dada)," Van Meter said.
"And I was like, 'Well, hang on, he's almost 3 and he's never said that,' and I knew something was not right, but I couldn't pinpoint it," she said.
So, she began researching and reading anything she could get her hands on.
"I guess about that time I looked into Child Find, which is a service through Polk County," Van Meter said.
An early intervention program, Child Find assists with children who have special needs who are currently not in school.
Through Child Find, Van Meter was able to find a proper Exceptional Education and Student Services (ESE) program for Cory. She also was able to make the connection with the Center for Autism and Related Disabilities (CARD) through the University of South Florida, where she took Cory for testing.
"And they came up with PDPNOS, which stands for pervasive developmental disorder, not otherwise specified," Van Meter said. "That falls under the umbrella of autism, and (it was) at this point that I figured it was autism."
"He was only 3," she continued. "At this point, they were not using the 'A word' - it's developmental - you don't want to put that (label of autism) on a kid until 6 years of age when they should have grown out of something or developed further."
By that time, Cory was enrolled into a pre-kindergarten VE - varying exceptionality - program at Dundee Elementary School, Van Meter said. Cory was with other children with issues such as Down syndrome, cerebral palsy or sensory issues like deafness. The pre-k teacher reported that Cory was not interacting with the other children and preferred to stay by himself.
"We even had taken him to testing with his ears because there were times when I would call his name and he wouldn't turn around," Van Meter said. His hearing was fine and genetic testing ruled out other maladies such as Fragile X syndrome, an inherited mental impairment. It was around this time that Van Meter read a book called "What to Do About Your Brain Injured Child" by Glenn Doman.
"It went into talking about the brain and all the developmental stages of the typical child," she said. They attended a weeklong course associated with the book in Philadelphia that taught about brain development and different therapies to hopefully reconnect some synapses in the brain that might be missing. The Van Meters saw the course as their best option for then-4-year-old Cory.
Now a board member of the Central Florida Autism Institute (CFAII.org) in Lakeland, Van Meter has since changed her approach from "fixing" Cory to helping him reach his highest potential, whatever that may be. After the course, the parents took Cory out of school and began an intensive program with him that included trying a gluten- and casein-free diet, breathing treatments, vitamin supplements, flash cards and relearning basic steps such as creeping on his hands and knees and crawling on his belly.
"It was like starting over," Van Meter said. "We did this six days a week, 10 to 12 hours a day for about two and half years - we had tons of volunteers."
"We started out crawling on the belly a couple feet, to 200 meters a day on the belly, to going a thousand meters a day creeping and crawling," she said. Van Meter did the exercises with her son. Together they crept, belly-crawled, and patterned religiously in the hopes of helping Cory's brain to make the connections he seemed to be missing.
"It was very intensive, but we feel it helped him," Van Meter said. "He was progressing, so in our minds it was working."
Van Meter is quick to stress she is not anti-vaccine, although she does have a belief of "educate before you vaccinate." The Van Meters may never really know what caused Cory's autism; however, they believe the vaccines may have triggered a predisposition for autism.
"And I don't believe in the (shot) schedule that we have," she said. "I believe that we get them too soon, too many at one time. If I had to do it all over again, I wouldn't do it before they were 2 years old. I would separate (the shots) out. I would not do combination shots."
Van Meter said parents have more control than they realize over the (shot) schedule their children receive. Working with her doctor, she tailored the schedule to her liking and had waivers signed when necessary, citing a familial predisposition to autism.
Van Meter's daughter, Connor, 14, just received the shots most children receive at the age 5, but Van Meter made sure the mercury additive, thimerosal, was removed from the combination shot. Connor is not autistic.
When Cory was 7 years old, he learned how to form the "d" sound and said "Dada" for the first time. He also began to echo people's speech, which is natural in speech development.
Van Meter said she put Cory back in a classroom when she noticed he would become upset when his sister, Connor, was dropped off at school, and he even tried to say her name - a sign Van Meter took to mean that Cory was noticing there were people in the world and was maybe ready for school again.
Now is a sophomore at Lake Region High School in Eagle Lake, Cory is in a self-contained classroom with other children who are also "differently-abled." However, Cory soon will take computer and reading courses with students who do not have autism.
A story of Hope
With all different sorts of paths to go down, parents of autistic children have choices to help their children reach their highest potential.
Winter Haven resident Kathy Lamond, whose daughter, Hope, is autistic, said no longer do families have to search in the dark for answers and support.
With incidences of autism in boys being four times greater than in girls, Hope's autism is a rarity. In fact, Lamond, who insists a diagnosis of autism isn't the end of the world, said she's never met another parent with an autistic daughter. The Lamonds put Hope in a regular classroom at an early age.
Now an 11-year-old, fifth-grade student at Elbert Elementary School, Hope is described by her mother as a "quirky" child. With an older and younger sibling, Lamond said her three daughters are just like any other set of sisters; they play, fight and annoy each other. But the road to get Hope to the functioning level where she is today has been a long one.
When Hope was 6 to 8 months old, Lamond said she and her husband noticed their daughter wasn't babbling like they knew she should be.
"I started to get concerned, and the pediatricians kept telling us 'Don't worry,'" Lamond said. "But at 12 months, we put our foot down."
Lamond called Van Meter, who directed Hope's parents to Florida's Early Steps program, an early intervention program that provides services and diagnoses for children who exhibit a considerable developmental delay.
"Initially, they said it was a significant speech delay and significant sensory integration problems," Lamond said. "But once she got to age 3, they started to say it was autism."
Lamond is no stranger to autism; she has a 40-year-old brother who is autistic and blind.
Lamond said she never dreamed she would have an autistic child.
"Back then, you didn't think there was a hereditary link," Lamond said. "But, obviously, something's going on there."
The Lamonds pursued treatment and when Hope was 15 months. She was receiving speech and occupational therapy that helped to make some headway in her development.
"The spectrum (of autism) is so wide," Lamond said. "You have kids that never learn to speak and those that are going to college - and going to school with regular children." The Lamonds plugged away at Hope's speech issues and initially she was we put in Achievement Academy, a school for children with special needs. However, with the advice of CARD and the family's developmental pediatrician, the Lamonds put Hope in school with "typical" children.
"I'm a big believer in mainstreaming children with autism because I watched my mother fight to try and get my brother mainstreamed, which never happened," she said.
Lamond found a school that would take both Hope and her older sister.
"Her speech just exploded; it really was the right decision," Lamond said. "I wholeheartedly believe in inclusion, because they model themselves after their environment, and if you put them in a dysfunctional environment, they're going to pick up that dysfunctional behavior."
Although, it wasn't a perfect situation.
"After a year of that, to my dismay, they asked me where I was putting her next year, because although we had a lot of positive things, there were a lot of negative," she said. The negative were mostly behavioral issues due to Hope's ADHD symptoms, which Lamond said is perceived as purposeful behavior; however, she said children on the spectrum are oftentimes simply unable to control their behavior.
Hope eventually was moved to Elbert Elementary.
Lamond said that although many people fought Hope being included in a classroom with "regular" children, they stood firm and Elbert's administration has been very supportive. Lamond said she is very impressed by the occupational therapy the school system has provided her daughter.
Although Hope has been on the honor roll since day one, Lamond said Hope struggles academically because the classes move so fast.
Socially, Lamond said her daughter, who openly tells people she's autistic, has both on and off days.
"Some kids are OK with her and some kids shun her because she's different, but overall it's been a good experience for us," she said.
Lamond believes Hope's presence in the classroom is good for the other children.
"It teaches children compassion, and I think it's a good lesson toward helping them understand that people with disabilities can be productive and neat people," she said. At home, Lamond said they do not have any lower expectations for Hope.
"I have three girls and (Hope) has to start the laundry and make her bed just like the other two," Lamond said. "So, we've at least tried to hold her to the same standards because we want her to be independent. We aren't ruling anything out; we have a college fund for her, we want her to be able to live on her own if she wants to.
Currently, Lamond is working with Hope in a therapy called RDI - relationships development intervention. The theory behind RDI is that children with autism missed certain milestones as they've grown up and they can go back to remediate these milestones, such as better eye contact and picking up on social cues.
"There is no magic bullet. There is no one therapy that works and the child is all better," Lamond said. "Everything I've done has put a little piece of the puzzle back in place, to making her a little more whole. She's a wonderful child. I wouldn't ask for anything different."
Piecing it together
The Central Florida Autism Institute (CFAII) began in 1997 in response to the frustrations that families have had trying to access services for their autistic children. Terry Millican, one of the founders and now the executive director of CFAII, has an 18-year-old autistic son named Ian.
Millican said CFAII's emphasis has always been on intensive behavior-based therapy. A little more than two years ago, the institute was able to recruit an Applied Behavior Analysis (ABA) provider, Andrea Holladay, from Miami. Using positive reinforcements to master skills, ABA therapy addresses social and language deficits, Millican said. An independent contractor working on a fee-for-service basis, Holladay goes into the homes of children with or working with them in CFAII's offices, located at 1525 S. Florida Ave., Suite 2, in Lakeland.
"ABA therapy is endorsed by the National Institute of Health and the surgeon general," Millican said. "It is the most effective intervention for individuals with autism. Even our CARD center in Tampa explored the most successful intervention for children with autism, and they recommended behavior-based intervention at an intense level at an early age."
Millican said "intense" is a subjective term; however, in all of her research, she said 20 to 40 hours a week is a good target to make a difference in behavior. She said CFAII has purchased the Fast Forward program, developed specifically for children with autism, and will offer it to families at a significantly reduced rate.
"We're trying as an organization to put our money into interventions that are outcome based and that have credible data to support them," she said. "There are a lot of interventions that don't."
Originally, Millican's son was diagnosed "severely autistic," and she and her husband were told Ian was "un-testable." At that time, she said, it was "before they had 90 percent of interventions that are available now." She said that was fortunate because her son was mainstreamed into regular classrooms right away, which helped him socially and otherwise. Ian is now a junior at Lake Gibson High School in Lakeland. Millican said he will graduate with a special diploma and most likely will stay in high school until the maximum age, 22.
In addition to numerous projects trying to increase autism awareness, one of Millican's main priorities as the executive director of CFAII has been to work with Polk County Public Schools to get a more consistent outcome-based approach in the schools. For example, she would like behavior specialists at every school where kids with autism are served. With very few ABA specialists in Central Florida, Millican said her program would like to see Holladay on the district's list of providers. She said the ratio of providers to children with needs is like comparing a drop of water to the ocean.
"We are dialoguing (with the Polk school district), and we do finally have some administrators who are interested in working with families," Millican said. "They're trying, which is more than I could say five years ago."
Another concern for the board of CFAII is working with employers on training initiatives to let them know that their children with autism are employable.
"Employment is dismal for most adults with disabilities, but especially adults with autism," Millican said. Project Search is a pilot program to help get real employment opportunities for individuals with disabilities. Together with her husband, Millican is working to help her own son, an artist, begin his own T-shirt screen-printing business.
"There is hope for people with autism," Millican said. "Anyone can get a job and work with the right training and support, and anyone can live in the community."
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