Autism and Seizures: A Parents' Story!

Twenty-nine years is a long time to have your heart torn apart. But that's exactly how it feels to watch the autistic son you love be unfairly judged and scorned by strangers for his behavior.
Barbara Coppo of Vallejo, author of "The Boy in the Window: A Journey Through an Unexpected Tragedy" (Morgan James Publishing, $26.95), always has seen beyond her son's actions and has cherished the rare moments when Kenny shows affection.

"There are no real kisses or hugs," she writes. "But when inclined, Kenny will quickly lower his head toward your shoulder, which may include a brief touch of his hand, too."

Barbara, 65, and her husband, Ken, 67, talked about their son's autism during a phone interview. Just reading Barbara's description of life with Kenny -- dealing with seizures, searching for special education programs and frequent medical appointments -- is overwhelming. The Coppos, who also have an adult daughter without autism, personify the term "unconditional love" between parent and child.

Barbara Coppo's book was released Oct. 1, two weeks after the memoir by actress Jenny McCarthy. McCarthy's new book, "Louder Than Words: A Mother's Journey in Healing Autism" (Dutton, $23.95), explains how her son, Evan, has thrived after therapy and treatment.

However, the book "Teaching Young Children with Autism Spectrum Disorder" (Gryphon House, $24.95) says children have varying degrees of autism. "Most professionals agree that each child with autism is unique and has his or her weaknesses, and each child falls somewhere on a spectrum of having a few more or a few less of certain characteristics than other children," Clarissa Willis writes.

According to the book, these characteristics include:

A significant delay in social interaction, such as eye contact or facial expression.

A communication delay.

Behaviors, including stereotypical behavior, such as intense, almost obsessive, preoccupation with objects.

The need for routines that are non-functional and ritualistic, such as lining up all the books or food in a certain matter.

Repeating motor movements over and over, such as finger-popping or handflapping.

The Coppos said the change in their son occurred at 19 months. Kenny had nine seizures three days after his last series of childhood vaccinations.

"There are so many times I wonder about the man he would have turned out to be had it not been for the devastation he suffered from the vaccination when he was a baby," Barbara writes.
Barbara describes Kenny as having a "Jekyll and Hyde" personality.

"When he is feeling good, he's in a better mood. We can tell when he's not feeling good" due to medication, she says. "He's grumpy and irritable. He can't communicate with us, and it frustrates him."

One victory occurred when Kenny was 16. He was able to answer questions by pointing to the letters of a computer or keyboard. Lately, Kenny isn't interested in doing computer work, Barbara says.

Years ago, the Coppos were told to consider placing Kenny in an institution. "Trying to raise a child like this would be a living hell," their doctor said.

Kenny, physically a grown man, has never said a single sentence, must be given showers and helped in the bathroom, and is prone to seizures. Sometimes, when it's time for bed, Kenny is combative.

The couple's devotion to their son has meant rare moments away from home. "It's almost like we have two different lives," Ken Coppo says. "There's our life with Kenny and the one we have when we get away. It's how our lives, retired and without kids, should be like. Then we come home, and it's back to reality."

The columnist can be reached at maguirre@fresnobee.com or (559) 441-6482.