LAKE IN THE HILLS – Anne Ledwitch recalls a time when she had to tell her 11-year-old son that he couldn’t join a junior hockey league since his autistic brother couldn’t handle traveling to games.
Bruce and Mary Jo Corsaro are aware that their 13-year-old son, Michael, sometimes feels like a only child, since he can’t fully socialize with his 10-year-old brother, Matthew, who was diagnosed with autism spectrum disorder at 2.
Families such as the Ledwitchs and Corsaros are not alone in grappling with the unique challenges, and rewards, that an autistic child brings.
Families of autistic children are known for operating in high-stress environments, where
communication roadblocks and temper tantrums can seemingly happen at random.
Oftentimes, parents have to travel to multiple therapy sessions a week, while making sure that the family’s needs are met.
“A lot of parents are taking their kids to Little League, soccer, basketball and hockey, and we are taking our kid to therapy,” Bruce Corsaro said, adding that Matthew has been his “biggest joy and biggest challenge.”
Autism spectrum disorder is a group of developmental disabilities that affects the brain and causes either mild to severe social, communication and behavioral impairments.
The Centers for Disease Control and Prevention estimates that one in every 88 children has autism spectrum disorder, an escalating trend from 2000, when the CDC identified one in every 150 children with ASD.
Both Ledwitch and the Corsaros have heard the stories of couples separating because of their autistic child, either from high medical costs or the demanding level of care. But both said families simply need to support one another.
“You got to stick together,” Mary Jo Corsaro said. “That’s the most important part. You almost have to make your marriage stronger because of this.”
When Matthew was 2, the Corsaros noticed he wasn’t responding to words and was lagging behind in speech. After talking with a pediatrician, they met with early intervention specialists, who told them about the “A word,” for the first time, Bruce Casaro said.
They immediately sent him to speech, occupational and behavioral therapy. They since have enrolled Matthew in the Chicago Education Project, a private school in Hoffman Estates that provides therapy and schooling exclusively for special-needs children.
The biggest challenge with Matthew, they said, is communication. They often have to speak deliberately and with simple sentences to ensure that Matthew understands. If they speak too fast, Matthew oftentimes will get irritated and frustrated, Bruce Corsaro said.
But they also said it’s important for him and the family to treat him like a kid, one who wants to play and get lost in imagination.
Inside their Lake in the Hills home, Matthew is proud to show off the many pop-up drawings he made from scratch, using Scotch tape, glue and markers of scenic images, such as a sailboat out to sea.
They also find time to do family activities. The Corsaros travel regularly to the Wisconsin Dells and spent hours in a car last year driving to Disneyland.
“We don’t change our life,” Mary Jo Corsaro said. “We try to operate as normally as we can.”
In the same town, Anne and John Ledwitch have a different experience. Their son Luke, 9, was diagnosed with nonverbal autism a week before his third birthday.
Luke still uses about 50 basic words a day, such as more food or more water, Anne Ledwitch said. Luke was taught the “Picture Exchange Communication System,” which aids communication through the use of pictures for children with developmental disabilities.
Luke’s diagnosis also rattled the family, since the couple already had two children, Alex, 15, and Stirling, 11, without disabilities.
Alex had the most questions and concerns, since he was old enough to see the developmental differences between Stirling and Luke, Anne Ledwitch said.
The family had to adjust from the typical household environment.
They take Luke shopping but do so during nonpeak hours in the early morning or late evening. They had to rule out organized sports for the siblings, since Luke struggles with being in open, public spaces for too long.
Anne Ledwitch calls the couple’s parenting style “divide and conquer,” since they individually shift spending time with the older brothers and caring for Luke.
“Our philosophy has always been, he’s Luke first and he’s autistic second,” Anne Ledwitch said. “You do have to modify what you do, unless it’s real necessary. Why would I put Luke in a situation that potentially is going to trigger his autism at a high level?”
The differences in care between Matthew Corsaro and Luke Ledwitch is not uncommon to see, said Winter Noe, who coordinates the Autism Support Program for Options and Advocacy in Crystal Lake.
Noe said they often hear from parents of autistic children with concerns about feeling trapped or being unable to care adequately for their child, since a cure for autism doesn’t exist.
The group runs a variety of support groups and does home consultation to help families transition to caring for their autistic child. She said parents oftentimes need to educate themselves, create a support network, and know their child’s tendencies.
“You need to take one thing at a time, and you need to see what works for you and what doesn’t work for you,” Noe said.
For the Ledwitchs, the family learned early in Luke’s diagnosis that they could switch options frequently.
Anne Ledwitch even turned to the television for stories about families with autistic children to get a sense of other people’s methods.
“We change what we do all the time. We work with it, and we work around it. But we let him be a kid first,” Anne Ledwitch said. “Those are the stories I like to see.”
Autism on the rise
2000/2002: One in every 150 children identified with an autism spectrum disorder
2004: One in every 125 children with ASD
2006: One in every 110 children with ASD
2008: One in every 88 children with ASD
Economic effect on autism care
• Individuals with an ASD on average spent between $4,100 to $6,200 more a year on medical costs than a person without ASD
• In 2005, average medical costs for a Medicaid-enrolled child with an ASD was six times higher than the same child without ASD ($10,709 vs. $1,812)
Source: The U.S. Centers for Disease Control and Prevention