As children with disabilities age, parents season lives with support

The monthly dinner meetings give parents a chance to use laughter as a coping mechanism.

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Vicki Ruley of the Walla Walla Police Department chats with data entry employee Brian Hough. Ruley, the parent of a son with autism, participates in monthly dinners with other parents who have adult children with lifelong disabilities. Hough's mom, Teri Hough, facilitates the support group for Walla Walla County. Parents with grown, disabled children have different challenges at this point in life.

WALLA WALLA - A recent gathering at Crossroads Steakhouse began like any dinner meeting. A few folks arrived a little late, someone asked about the soup, people ordered drinks and waffled on salad dressing choices.

And, like anything involving parents, there were pictures of children to be passed around, oohed and ahhed over.

But differences become apparent soon enough. For starters, the waiter offered to begin taking dinner orders with "the screwdriver lady," which was greeted by raucous and knowing laughter.

And the stories about the kids? "Of course, he's gotten involved with a pyramid scheme, which has caused some stress for us," one dad recounted.

"But at least he's dressing better," his wife added. "We could have talked 50 years and he wouldn't have cared what he was wearing."

Cue the laughter again.

Indeed, these are people who have adopted merriment as a coping mechanism - the restaurant's private dining room is populated with parents of adult and nearly-adult children who will live their entire lives with disabilities.

Those run the gamut in this group. From the umbrella of "developmental disabilities" to the very specific Rett syndrome, every family represented at the table on this spring evening has a unique perspective.

For these parents, it's a story that begins with a shattered picture of the perfect baby, evolving to a portrait of a child perfect for his or her family. And once a month September through June, moms and dads come together in Walla Walla to share pieces of their not run-of-the-mill lives.

"It's a club I never wanted to join," explained Michelle Aguilar, mom to 16-year-old Katie. "But I'm happy I'm here."

With these folks, the chaos of early childhood and that initial - frightening - diagnosis is over, explained Carla Nibler of Walla Walla County's Department of Human Services.

Most questions about their children have been resolved one way or another, life has continued and the world did not come to an end with speculation from a pediatrician's lips.

"Here, we can laugh about what our kids do. Like the one parent who talked about her daughter pulling all the strips off sanitary napkins and pasting them down as a footpath," Nibler said.

Once upon a time, the county facilitated a single Parent-to-Parent group here, known better as P2P.

The program, which runs like a support system on overdrive - all energy, angst and hope - eventually needed halving, noted coordinator Teri Hough. Parents of younger kids have different issues than those who have already gone over the waterfall several dozen times.

Vicki Ruley agrees. When son Marc was very young, attending P2P opened up her world. But thinking into the future didn't factor in, she said. "Because my son was going to outgrow it."

Marc, diagnosed with autism and now 23 years old, lives at another residence and has paid employment. And P2P meetings continue to be a lifeline she hangs onto, Ruley said. "Everyone here can relate with one another."

Not so long ago, caregivers for older developmentally disabled kids in this area were under served. Not only was there little to no over-arching support, when these parents died their adult disabled children were "absolutely lost," Nibler said.

That situation, she said, "was leaving their kids stranded and taken out of the family home for the first time."

A state grant for older care providers allowed the county to create a separate group, "for parents who have already come to grips with their child's disability," Nibler said. "No one is trying to fix it. They have accepted it."

The camaraderie is palpable. While everyone does mention their children, they also talk about nearly everything else, and season every conversation with laughs.

Aguilar, whose daughter transitioned into high school this past fall, finds the group provides what friends and family cannot - life experience just hasn't given everyone that option, she said. "My best friend, my sister and my mother ... they just don't get it."

Her daughter is, developmentally at least, a toddler, Aguilar said. "Friends can't understand why we can't come to things. It's a frustration."

Lola Bennett, who cared for her 42-year-old daughter Karlene at home until recently, nods her head. "I used to say something about being tired and someone said, ‘I wonder if you're anemic?'"

Once again, the private dining area echoes with laughter.

"I'm not sure if I ever could have gotten through it without these people," said Brenda Linscott.

"We really are a tight group," said Nibler, who attends as a parent as well as a county employee. "People really enjoy this, we have a total understanding. The things we find funny, younger families probably wouldn't."

On this night, she is flanked by her husband, Gary. And that's another difference, Nibler points out. When children with disabilities are young, fathers are more likely to be absent from a lot of the hullabaloo surrounding education, testing and advocacy. But once the special-need children have become adults, dads often find a niche in financial issues and estate planning.

Some fathers, even if they never say a word at the monthly dinners, wouldn't miss it for the world, she said.

Glynne and Patsy Hixson come from Milton-Freewater to attend the dinners. Their daughter Tiffany, 16, was born with Down syndrome. As an Oregonian, she receives no services from Walla Walla County.

However, just hearing the accumulated wisdom makes attendance worth the effort, the Hixsons agreed.

As do experts. George H.S. Singer, who holds a doctorate with an emphasis in special education, has spent more than 20 years in research and teaching about people with disabilities and their families. Currently a professor at The Gervirtz School at the University of California, Santa Barbara, Singer has taught and written profusely on the subject.

What cannot be ignored is the large and growing population of adults with some sort of developmental complication, which can include autism, intellectual disability and cerebral palsy.

"What is happening as the baby boomers are approaching retirement age, there is a corresponding percentage, a population bulge, of adults with developmental disabilities entering that same age zone," Singer said. "Over half of those are still living at home with aging parents."

Those parents feel isolated, especially when they have a child who is seen as different - in a way that is not valued, he added. "It's a lonely kind of existence."

Moms and dads interact mostly with service and medical providers, who have a set role to play. Peer support, on the other hand, is often a missing piece.

"There is a certain kind of emotional support of people who can say they have ‘been there, done that.' That experience makes the information that parents exchange more believable," the professor said.

Like when Ara's folks, Jeanne McMenemy and Wayne Chabre, discuss how their son looks at houses on the Internet that will fit the needs of the whole family. "He looks at houses in Florida online," Chabre said, amidst the sympathetic laughter already building. "He tells me, ‘It's only $19 million. That's not bad.' Then we get the e-mails from the Realtors."

This group is more of understanding of Ara's quirks than her own mother was, McMenemy noted. "My mom didn't believe (the diagnosis). She was not accepting. He was her first grandchild and she told me he was brilliant."

Her mother struggled as well, Linscott recalled. Her son Brandon, now 22 and loving life, was hard to handle at a younger age. "My mom didn't like to have us over to the house."

The Niblers nodded. There's one family portrait in her mind that says it all, Carla said. "I'm trying to wrestle my kid to stand still, and my dad is standing there with a disapproving look. My family always thought we were spoiling him."

The stories, even the hard ones, serve to bind these parents tighter, Hough said as people started signaling for their checks and checking cell phones. "We're a fun group. I know none of us wanted to belong, but where else are you going to get the black humor?"

No where, speculated Singer. "There is a huge amount of pent-up need, a lot of un- or under-served people. This helps."

FYI

For more on the Parent 2 Parent program, call 524-2920.

Services could disappear

Many of the services provided by Washington state's Parent to Parent organization are in danger of disappearing, noted state Director Susan Atkins. "The governor's budget proposal cut county Developmental Disability contracts, which help fund the Parent to Parent programs."

The Legislature is working on the budget with Gov. Chris Gregoire, she added. "We hope, that in the final budget negotiations, that the county DD contracts are not reduced, and that county funding will continue for Parent to Parent programs."

Sheila Hagar can be reached at sheilahagar@wwub.com or 526-8322.

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