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When Lisa Nally-Martin's first son, Evan, was born it didn't take long for her to realize that something wasn't right.
He was born two weeks early, and his umbilical cord had been wrapped around his neck, so she assumed that's why he wasn't eating properly.
But, as the days and months passed, things still weren't right.
All of the typical developmental milestones that most children could do at his age, Evan wasn't doing.
He wasn't smiling and laughing. He wasn't gurgling and cooing. In fact, he wasn't making any sounds at all.
He couldn't bear weight on his legs, and at six months, he still wasn't sitting up.
In the beginning when Lisa raised concerns, Evan's doctors said to wait it out. But, when Evan was six months old she asked the pediatrician to refer them to another doctor.
"He wasn't making sounds. He wasn't talking," she said. "I'm the oldest of six kids. I knew that wasn't right."
Evan was eventually diagnosed with autism.
According to Autism Speaks, the nation's largest autism science and advocacy organization, autism is a general term used to describe a group of complex developmental brain disorders. Today, it's estimated that one in every 110 children is diagnosed with autism, making it more common than childhood cancer, juvenile diabetes and pediatric AIDS combined. An estimated 1.5 million individuals in the U.S. and tens of millions worldwide are affected by autism. There are probably multiple causes of autism, but no one knows for certain what causes it.
From the day Evan was diagnosed, Lisa has dedicated her time to researching autism and trying to find different ways to help her son. When Evan was nine months old, she enrolled him in First Steps, which provides services to children with developmental disabilities from birth to age three. She's tried as many different therapies as possible - physical therapy, occupational therapy, speech therapy, as well as alternative therapies.
"If you don't do the intensive intervention in the beginning, these kids lose out," she said. "I was fortunate that I did that. It's made a huge difference."
But, even with intense therapy, Evan didn't talk at all until he was six years old. Even then, he only said a couple of words.
Today, Evan is 12. He attends school, he's starting to write his name, he grins and he laughs. And, although he doesn't speak very often, he's a very social child. But, that's because Lisa has actively taken him out in public, whether that be grocery shopping or to special events and activities.
"Evan loves people. He knows no strangers," she said.
But, Lisa doesn't deny that being the parent of an autistic child is extremely difficult, and it sometimes means that you have to swallow your pride.
"I may go to Walmart and he may be tired, he might flop down on the floor and do what I call the noodle," she said. "You have to learn to swallow your pride. My big fear is some people keep kids in because they are different and it's harder."
What people need to understand is that autistic children act out, not because they are bad children, but because they have sensory discomfort or they are simply frustrated because they can't communicate what they want, Lisa said.
For instance, getting Evan's hair cut and taking him to the dentist is a fight and he has to be physically restrained to do both, Lisa said. She is convinced that cutting his hair is painful for Evan. To try and make the experience less traumatic, Lisa cuts his hair now, but taking him for a dentist appointment is still a struggle.
"Simple things that people don't think about could really affect them," she said.
However, seeing Evan make progress, no matter how big or small, has helped Lisa remain optimistic. She said he's amazing with technology, he loves music and the outdoors. He's learned to communicate if he's mad or sad, but he can't tell you why. She said the hardest part for her is when he's sick.
"He can't tell me what is wrong with him," she said.
She also said that she feels guilty that her 8-year-old son Cameron gets left out sometimes. She's a single mom and works full-time, which is difficult to juggle, she said.
"Cameron is the younger brother, but he's had to sort of be the man of the house," Lisa said.
However, growing up with an autistic brother has made Cameron very open to people with disabilities, she said.
"Even to this day Evan will hardly even say his name, but Cameron will say it for him," Lisa said.
And Lisa does manage to find some time for herself. She's involved with several women's organizations in Marion and Washington counties, and she treats herself to a massage once a month.
"I try to get breaks. If you don't get some breaks, you're not going to be any good to your children," Lisa said.
"Working the Puzzle for Autism" Walk...
Lisa said she finds comfort in helping others, which is why she's organizing the first-ever "Working the Puzzle for Autism" Walk. The walk will be held this Saturday, April 2, which is also World Autism Awareness Day.
One of the main reasons Lisa wanted to organize the walk is she wants people to know she's open to talking about autism.
"I think sometimes people don't want to talk about it because they are overwhelmed," she said.
Lisa said she's been amazed by the number of people that are affected by autism in Marion and Washington counties, and she hopes the upcoming event will be helpful. There will be several different providers there to help educate people and provide a number of resources and autism awareness items. There will be speech, physical and occupational therapists on hand. The Kentucky Autism Center will also have representatives at the walk with a number of resources available. The REATH (Riding Enhanced Around Therapeutic Horses) Center of Campbellsville will have their equicizer (mechanical horse) at the event as well.
Project Lifesaver International representatives will also be at the event. Lisa applied and received a $3,399 grant for Marion County that will pay for the cost to set up the Project Lifesaver program locally and provide emergency management with the needed equipment. People that are enrolled in Project Lifesaver wear a bracelet (equipped with a transmitter) around the wrist or ankle that emits an individualized tracking signal. If a person goes missing, the caregiver notifies local emergency services and they would respond and locate the person.
Lisa plans to use some of the funds generated at the upcoming event to donate to a local family to purchase a Project Lifesaver bracelet, which cost $300 a piece. She also plans to donate some of the money raised at this year's event to the Michala Riggle Beat Autism Foundation. (See sidebar.)
During the actual event, there will be a special medallion ceremony for children with autism, games for the children, and at the end of the event, Lisa plans to have a balloon release.
WORLD AUTISM AWARENESS DAY
April 2, 2011 will mark the fourth annual celebration of World Autism Awareness Day. To raise money for autism and help families and friends of children with autism find support, the first "Working the Puzzle for Autism" Walk will be held from 10 a.m. to 1 p.m., April 2, at Graham Memorial Park in Lebanon. For more information, contact Lisa Nally-Martin by e-mailing her at firstname.lastname@example.org or calling (270) 699-2697.
WHAT IS AUTISM?
Autism is a general term used to describe a group of complex developmental brain disorders known as Pervasive Developmental Disorders (PDD).
HOW COMMON IS AUTISM?
Today, it is estimated that one in every 110 children is diagnosed with autism, making it more common than childhood cancer, juvenile diabetes and pediatric AIDS combined. An estimated 1.5 million individuals in the U.S. and tens of millions worldwide are affected by autism. Government statistics suggest the prevalence rate of autism is increasing 10-17 percent annually. There is no established explanation for this increase, although improved diagnosis and environmental influences are two reasons often considered. Studies suggest boys are more likely than girls to develop autism and receive the diagnosis three to four times more frequently. Current estimates are that in the United States alone, one out of 70 boys is diagnosed with autism.
WHAT CAUSES AUTISM?
The simple answer is we don't know. The vast majority of cases of autism are idiopathic, which means the cause is unknown.
The more complex answer is that just as there are different levels of severity and combinations of symptoms in autism, there are probably multiple causes. The best scientific evidence available to us today points toward a potential for various combinations of factors causing autism - multiple genetic components that may cause autism on their own or possibly when combined with exposure to as yet undetermined environmental factors. Timing of exposure during the child's development (before, during or after birth) may also play a role in the development or final presentation of the disorder.
Information provided by Autism Speaks, the nation's largest autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. Autism Speaks was founded in February 2005 by Bob and Suzanne Wright, grandparents of a child with autism.