Parents raising children with autism feel their isolation

myoung@bradenton.comMay 13, 2014 

WEST BRADENTON -- Perhaps the best known attribute of autism is the way a child will isolates into their own world.

That is just the surface and depends on what kind of autism the child has. However, isolation is a common thread parents have with their autistic children because autism is not well understood in the general public, according to Paula Lewis, a mother of three children, all who are autistic.

Lewis' sons Morgan, 10, and Jacob, 15 have a more common form of autism known as Asperger's Syndrome. It's considered to be the "high functioning" form of the development disorder, but carries with it many challenges.

Lewis said the challenges of everyday tasks and activities are compounded by the disorder.

"It's a 2-hour process just getting Morgan ready for bed," said Lewis. "It's the typical things kids need to do as far as getting dressed and brushing their teeth, but to the very extreme. Their executive function doesn't work, so they don't see the next step of every process. You don't realize how many steps there are in everyday activities until you have to explain each one of those steps every single time."

Autism is a growing concern. It's a neurological and biological disorder that is typically diagnosed in children between 18 months and 5 years old. Just a few years ago, the American Medical Association estimated that one in every 88 children in America will be affected by autism. That number has changed to one in every 68 children and there is no known cause and can impact each

child differently.

Common symptoms of someone with autism are the inability to communicate, behavioral issues, trouble learning and associated medical issues.

The good news about children with Asperger's Syndrome is that they are very often highly intelligent people. Experts in the field have looked at historical figures and concluded Albert Einstein, Thomas Edison, Mozart and Mark Twain likely suffered from autism. Other public figures known to have autism include Andy Warhol, Steven Spielberg and Bill Gates.

While raising her two boys still has many challenges, nothing prepared her for the diagnosis of her daughter Olivia, 2, who was diagnosed at 19 months with regressive autism, considered to be the second most severe kind of autism. Olivia has a much more difficult road ahead than her two brothers and as such, so does Lewis.

"She was a perfectly fine little girl up until 19 months and all of a sudden there was no eye contact, no verbal communication, she stopped interacting with everyone and has severe meltdowns all the time," said Lewis.

Olivia has sensory issues related to her autism that can send her off running and terrified depending on the noise and Lewis said she never knows what the noise will be that will set off the episode.

"It can take minutes or hours to calm her down," said Lewis.

Understanding can go a long way in helping parents cope with the daily stress of raising children with autism.

Lewis describes the day of the diagnosis as the first day of a greiving process. First is the grief at the bad news, then the anger and then the guilt of what many mothers feel in taking on "It must be my fault somehow" mentality for the diagnosis. And the outside world is not always quick to sympathize.

In a letter she wrote to herself during a particulary emotional time, Lewis writes, "You've seen me in the store, on the street or at a restaurant. I'm the one with the child that acts a little different, looks a little different or yes, even has an outburst that causes a disruption for no apparent reason."

She doesn't want to be judged or pitied.

"I have cried more tears than you know and felt more guilt than should even be humanly possible ... and felt more alone in a room full of people than you could realize," she said.

She cautions people that the next time they see a screaming child at a grocery store to not judge too quickly in thinking the tired woman pushing the cart is a bad mother. She may have just endured an epic battle in getting to the store in the first place.

Lewis said she and her husband Billy, "who kicks butt at being a dad," are lucky they have the support of family, friends and her extended church family. She can't imagine how some parents without any support cope with a world that can sometimes be hostile toward what they don't understand.

"I remember taking my eyes off of Olivia for a few seconds while I had to deal with a crisis developing with Morgan," said Lewis. "She crawled out the window and went next door and fortunately a neighbor found her by their window. But some woman came at me screaming what a horrible person I am, what a horrible mother I am. She called child protective services and I had to go through a very difficult time educating the investigator and the police officer about autism."

It was just one more battle to fight in a daily routine of fighting for her children's happiness and health.

To help other parents in similar battles, Lewis wants to begin an autism support group in West Bradenton that is open to any parent of an autistic child who can get away from their situations "Just to get a break or to vent to people who understand their life," said Lewis.

To find out more about the support group or join, contact Lewis at parent2parentautism@gmail.com or visit thechurchwithoutlimits.com to learn more about the meeting location.

Mark Young, Herald urban affairs reporter, can be reached at 941-745-7041 or follow him on Twitter @urbanmark2014.

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