Intense isolation

"Intense isolation" Continued...

Issue: "Who will vote?," April 21, 2012

William attends the nonprofit Jane Judson School, part of the Child Study Center in Fort Worth, Texas, where he receives year-round, all-day education. It is expensive-$10,000 a year for tuition and $10,000 for speech therapy-with neither insurance nor the government covering those costs. Seth Fowler says they chose it because "he's not one of the 'weird' kids in the class like he was in other classrooms."

Most children with an ASD attend public schools, receiving services under the Americans with Disabilities Act. Although younger children are eligible for services, many don't get diagnosed until they enter school. Even then the services they receive are highly dependent on their parents' socioeconomic status and ability to push through bureaucracy. A Los Angeles Times series documented how poor and minority children in California are much less likely to be diagnosed and receive services than kids from affluent families, even when the poor kids have greater disability.

In an age of budget restraints, parents are paying close attention to the American Psychiatric Association, which plans to announce next year changes to the definition of ASD. The new definition defines more narrowly the combination of symptoms that merits a diagnosis and will likely make some current recipients ineligible for services.

Will William continue to develop academically and go on to college? The Fowlers hope so, but they understand he might not. They keep their expectations high, wanting him to be an active member of society and not a burden. Part of William's success will depend on his connections to church and his sister Margaret.

She used to ask her parents why William was so upset or why he wouldn't talk to her. Now she knows that her brother has autism. Melanie Fowler deliberately creates experiences that bring William and Margaret together. Ultimately the Fowlers are impressing on their children the understanding that William was "not an accident. God was not surprised. William is a gift."

The turning point for the LeDeauxes, facing relentless personal and financial pressures, came when Lisa told Mark to leave. He went out, but came back and said, "You can't make me leave." That's when it turned around. The meetings they had been having with officials to discuss turning Marcus over to the state kept ending with Lisa in tears: "I just couldn't do it." The officials finally decided that the best and most cost effective plan was to give the LeDeauxes the respite care and support they needed to care for Marcus at home.

A couple of months have passed since the family reunited. Mark continues to be the primary caregiver for Marcus. Lisa continues to work at her shop. She says the separation was painful after 22 years of marriage, but God had to make each of them willing to change. Mark chose to give up drinking: They now have an alcohol-free home. Lisa had to stop being so critical about the way Mark handles Marcus, especially now that the boy is older. Since Mark is the primary caregiver, she had to let him do it his way, which means more discipline and structure. They've seen benefits from Mark's approach: Marcus now urinates in the toilet and doesn't need a diaper during the day.

Lisa still listens to sermons through oneplace.com, a central clearinghouse for preachers like R.C. Sproul and Adrian Rogers. Without a church community, she relies heavily on her parents: "If I didn't have family, I don't know what I'd do." Her friendships with the people who work and shop at Love Child help.

In the store for most of my visit, Mark has been quietly keeping his eye on Marcus. I ask about the reasons that so many fathers of autistic children leave. He said, "Conflicts with the mother about how care should be given" probably account for part of it.

What would he say to a father whose son just received an autism diagnosis? "The results are not going to be quick. You have to be patient." He goes on to explain how friends and family can offer encouragement: "Getting Marcus to use a potty is a huge accomplishment for us. It might not seem like much to other people. They have to reinforce the positive, celebrate the victories even if they don't seem big. You have to high five 'em. Hooray, hooray them."

Mark and Lisa LeDeaux know that Marcus will always be dependent on someone for care. That worries Mark: "Someday I'm not going to be able to deal with him. ... There's a lot of bad out there. People who might abuse him. He might run into someone without the patience to care for him."


You must be a WORLD member to post comments.

    Keep Reading


    Life with Lyme

    For long-term Lyme patients, treatment is a matter of…