Helping a Family to Function

Wendy and Paul Chatto are mentally disabled, and married. Eight years ago, their daughter, Vanessa, was born with cerebral palsy and learning problems of her own.

That’s when Liz Aced came in.

A counselor with the Assn. of Retarded Citizens in Ventura, Aced has watched Vanessa grow up and struggled with helping the family work as a cohesive unit.

“I don’t have all the answers because I’m not a parent,” says Aced. “A lot of this I am learning with them.”

But the Chattos both agree that without Aced, life would be chaotic. “Things would be turned upside down,” says Wendy. “Like where do we go from here?” wonders Paul.

If raising children is a job that perplexes every parent, the challenges are especially complex when the parents are mentally disabled. Yet, 20 years into the experiment in independent living that was launched when states started shutting down their residential care facilities for people once labeled retarded, more and more mentally disabled adults are in the work force, filing for marriage licenses and having children.

“We have an entire segment of the population approaching normal living,” says John Stack, program director for the association’s Center for Independent Living, where 20 clients at a time learn the skills they need to live on their own. “It’s exciting.”

It’s also in some ways surprising. When the care facilities began emptying, few people seemed to give much thought to the consequences. “People think developmentally disabled individuals are asexual,” said Aced. “That’s not true.”

There are no laws that prohibit procreation between consenting disabled adults and no protocol if a family results. The rule of thumb is the same for the rest of the population--if possible, children should remain with their parents.

Support Needed

The big question is whether the family has the support it needs to raise a child and if parents know how to get it. Aced says developmentally disabled individuals who choose to parent often need more help than friends and families can offer.

“You and I would call a friend when we have a problem,” says Aced. “These individuals need more elaborate support.”

Wendy, 34, and Paul, 40, met at a local restaurant where both worked. Paul says it wasn’t love at first sight, but as they got to know each other, they discovered similarities in their backgrounds--such as being two months premature. But through their differences they also helped each other. Paul has trouble processing what people say to him, so Wendy, who calls herself a slow learner, helped him understand what he was supposed to do on the job.

“I don’t believe in abortion,” says Wendy, who still does most of the talking for the two, explaining the couple’s decision to continue the pregnancy once they realized Vanessa was on the way.

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Like many young couples, Paul and Wendy married with the idea of having a family. “I thought if the baby was born with a disability, we’d deal with it,” says Wendy. “My mother never treated me as if I had a disability. If I ran into an obstacle, I figured out a way to beat it.”

Before Vanessa was born, Paul and Wendy had been denied public mental-health services because their disabilities weren’t considered severe. With the pregnancy, the Chattos decided they needed help and tried again. They were referred to the Center for Independent Living.

Aced set up a schedule that still includes two to three hours each week of counseling and help over the phone whenever the family needs it. “It wasn’t so much parenting skills they lacked,” Aced remembers. “It was getting through the system to get all the financial aid Vanessa was entitled to.

“For a person without disabilities, it can be difficult to deal with public agencies like MediCal. For someone with learning disabilities, it’s like a [non-disabled] person trying to deal with the Department of Motor Vehicles.”

Locating Resources

Funds in hand, Aced helped the Chattos locate resources and ferried the family to the round of specialists that have dominated Vanessa’s childhood. First there was an eye surgeon, then a string of hearing specialists who took two years to diagnose Vanessa’s hearing defect, a result of the cerebral palsy she inherited from her mother. Speech therapists and occupational therapists helped Vanessa with her physical coordination. Then there was getting Vanessa into the special-education program at Blanche Reynolds Elementary School in Ventura, and keeping her on track there.

“There were times when I felt like I wanted to give up,” Wendy admits. “But you have this child, and you can’t give up.”

“We were overwhelmed,” says Paul, who remembers Aced made them feel like they had someone in their corner.

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When the family had trouble with finances, Aced helped them budget. When they needed a larger apartment, Aced helped them get settled in a two-bedroom condominium where the landlord was willing to take HUD subsidies. When Paul needed a job, Aced scouted programs and sent him to the Work Training Program in Ventura, which specializes in job recruitment and placement for the developmentally disabled.

Finding and holding a job is an important requisite for independent living. Work provides both income and self-esteem.

Recruiter Heidi Wagner helped Paul develop a resume and practice his interviewing skills. “Paul was applying everywhere,” says Wagner, “and nobody would talk to him. Like anyone else, sometimes it’s just a matter of learning how to sell yourself.”

When Paul landed a job as a cashier at Taco Bell, Wagner went through training with him and still checks to see how he’s doing.

Aced says her goal is to get to the day the Chattos don’t need her. “I don’t want them to be dependent on me,” she emphasizes. “I want to foster independence.”

Mediated Learning

To do this, Aced uses a technique called mediated learning, which she is studying at Cal Lutheran University as part of her master’s program. Aced acts as the Chattos’ interpreter, helping them decipher information they must deal with and understand what’s expected of them.

“You break things down into the simplest components,” Aced explains. “If you’re teaching someone to sort laundry, as I’ve been doing with Vanessa, you don’t say ‘beige,’ you say, ‘dark and light.’ ”

On cue, Vanessa jumps from her father’s lap to demonstrate how she learned to make her own hot chocolate. The peripatetic 8-year-old talks herself through the steps. “First I get the milk from the refrigerator,” she explains, pouring the milk in a cup. “Then I mix it with chocolate, then I put it in the oven.

“One, zero, zero, start,” Vanessa says as she pushes the buttons on the microwave.

As far as Paul and Wendy have come, there are still frustrations. Vanessa’s school has labeled her mentally retarded. “That label will follow her through school. They’ll see her paperwork and think she can’t be taught,” Wendy says.

“Change it,” says Aced. “Scratch it out and put the right word in.”

Although forms and red tape are always a problem, parenting a child with a mental disability creates its own problems. Paul enrolled in a class on handling anger when he found that Vanessa’s sometimes-frantic activity was getting the best of him.

“I’d be yelling at her and not even know it,” says Paul. “I had to learn to bring myself down a little.”

Both parents have also attended seminars on discipline.

Finding Alternatives

When Vanessa’s hyperactivity made it difficult for her to settle in her room for time-out, Wendy invented an alternative. She placed the child in her car seat and strapped the seat to a chair. “Usually, she fell asleep,” she said with a smile.

Hard as it has been for the Chattos, child-rearing can be even more problematic for a disabled parent with a child whose intelligence is in the normal range.

“The big issue we run into in that situation,” says Stack, “is when the child is smarter than the parent. We have one family now where it is apparent that the 4-year-old can outsmart Mom, who is a single parent. We’re trying to help the child understand that just because she’s smarter than Mom doesn’t give her the right to misbehave. In the long run, we don’t know how this will all go together. It’s too new.”

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Only 25% of Aced’s client families live on their own now, but as more disabled individuals join the larger society, the number of disabled parents raising children will increase.

Paul still thinks about pursuing an acting career and perhaps teaching hearing-impaired children the sign language he taught himself. Wendy’s next challenge is to decide when to begin the day care career she is studying for at Ventura College, balancing every working mom’s dilemma, job and family.

And Paul and Wendy would like a brother or sister for Vanessa. “We’re trying,” says Wendy, “It just hasn’t happened yet.”

According to Aced, Vanessa can probably look forward to landing a job or going to college like her parents.”

How long the counselor stays with the family depends on how long the Chattos want her services. “Paul and Wendy and Vanessa are a remarkable family. They’ve come so far, and they’ve done 99% of the work themselves,” says Aced.

Top Priority

The Chattos say their daughter will continue to be their top priority. They’re concerned about giving her everything she needs to live as normally as possible, although this doesn’t mean missing out on fun. Paul and Vanessa take skating lessons together at Skating Plus in Ventura. Vanessa says she’s now a top student, leaving her dad in the dust.

“It’s hard,” Vanessa confides.

“But you can do it,” her father encourages her.

“Yes,” she says, “I can do it.”