Mothers of special-needs kids find support

The Amazing Moms know how to spot ’em.

Regular meeting: The group meets every Thursday morning in a private home in east Vancouver. For more information, email Roberta Bernhardt at rmbernhardt@yahoo.com.

Candidates forum: The Amazing Moms will be at an upcoming legislative candidates forum on living with disabilities, sponsored by the Clark County Disability Coalition. It is at 6:30 p.m. Oct. 15 at Clark College Columbia Tech Center, 18700 S.E. Mill Plain Blvd., Vancouver.

The kid who’s blown away by sensory overload, throwing a violent tantrum on the floor of the supermarket. The totally nonverbal kid who doesn’t seem to hear or smile or meet other people’s eyes. The kid who cries constantly and can’t be comforted. The kid who yanks beleaguered, tolerant Mom’s hair to get her attention.

The kids who grow up to be adults with all the same behaviors — and the exhausted, dedicated moms who never stop loving and tending them across years, and even decades of difficulty and drama.

“Oh, your kid is all over the floor. I recognize that,” Cherie Elvestrom said, chuckling, while describing how the Amazing Moms “stalk” their own kind.

Group members are armed with business cards that advertise their Thursday morning meetings at Roberta Bernhardt’s home in east Vancouver and underline a crucial reassurance for the moms of special-needs kids who have a special need of their own.

The message: “You’re not alone! We have a life group with moms just like you, facing the same challenges every day.”

“I meet lots of moms who feel so isolated,” said Bernhardt. “You feel like you are the only one, but you’re so not.”

“If I didn’t have this group I don’t know what I would do,” said Andrea Hoffman.

Informal but serious

Bernhardt’s daughter, Melissa, was born premature and deaf. Now 29, Melissa still lives at home with her parents but is working part time and making plans with her boyfriend. Bernhardt spent Melissa’s youth rising to all of the challenges, from personal to bureaucratic, that were stacked against her daughter.

It wasn’t the motherhood she expected.

“When you’re pregnant, you have this dream of what it’s going to be like,” she said. You learn to put those dreams away and adjust to a different reality. What else can you do?

Meanwhile, about a dozen years ago, a local Bible study group that started at Living Hope Church took on a life of its own as a support group for mothers of children with disabilities. When the original hostess of the group decided to pass on her role, Bernhardt realized she was being called.

“I knew I could take that on,” she said. “I’d already done 15 years of agencies and lawyers and Individual Education Plans and everything else you can think of.”

Under Bernhardt’s loving-but-serious direction, the group’s email list grew from 10 or 15 families to as many as 90; Bernhardt said there are about 25 regulars who show up most Thursday mornings. Some have been with the group for years.

“I have a mom taking care of a 42-year-old,” she said. “Over the past 12 years, our kids have gotten older, and their needs have changed.”

The group was and is informal and welcoming — much of it is a gab session — except that Bernhardt also keeps it educational, relevant and responsive to its participants’ lives. The Oct. 2 meeting was an organizational one for the new school year, with the group brainstorming guest speakers, activities and plans based on what they’re going through.

They’re interested in drafting a family law attorney who can speak about guardianship issues as very dependent children become still-dependent adults. Because one mom’s child is facing terminal illness — a tragedy other moms in the group have suffered before — Bernhardt is planning a unit on handling grief and loss. Because many of the moms in the group have multiple children with neurodevelopmental disorders such as autism and Asperger’s syndrome, they’re keen to hear the latest research on these topics.

Bernhardt said the Amazing Moms group has included every kind of disability one can think of — from blindness to Down syndrome to spina bifida — but a preponderance these days have those autism-spectrum disorders.

And because it’s sadly typical for some people with developmental disabilities — whose behavior may appear aggressive or threatening or simply unfathomable to bystanders — to wind up in handcuffs, the group is also keen to put heads together with police and other first responders to find out how they’re trained to deal with special-needs people in crisis. There was some discussion on Oct. 2 about the pros and cons of providing police with a database of people with disabilities and where they live: helpful tool or sacrifice of privacy?

The group is interested in improving access to mainstream opportunities and experiences, from gaining employment to riding public transit. Sandy Silvera reported that C-Tran now has a dedicated guide — a travel trainer — whose job is to accompany disabled people and senior citizens for their first few journeys as they learn to ride the bus.

Marilyn Price said her son has used that service, and it has come to mean the world to her because it offers freedom that she hasn’t enjoyed in years.

Amazing stress

Some of these moms said their endlessly challenging situations lead to vanishing support from friends and extended family.

“Society doesn’t know what to do with these kids,” said Andrea Hoffman. “They aren’t like other kids. They don’t act normal. People stare.”

Hoffman said friends she’s had since childhood have slipped out of her life because of her extreme situation: four of her six children are severely developmentally delayed and epileptic, she said.

Too many of these Amazing Moms have been divorced or even fled domestic abuse, Bernhardt said.

“The stress level is enormous, and the dads, for whatever reason, are often gone,” she said.

She added this admittedly gross generalization: “Men are fixers. They want to fix the problem. But you can’t fix this. There’s nothing to fix.”

“The divorce rate is extremely high,” agreed Marilyn Price, who has a bad marriage in her past and two special needs children in her present.

When Price suffered a brain injury in a car accident, people started urging her to get more help. Early connections with the Arc of Southwest Washington, a long-standing local nonprofit agency working with people with disabilities and delays of all sorts, led her to the Amazing Moms group.

The expertise and connections that Bernhardt has developed over the years — she’s been to more meetings, worked with more agencies and explored more resources than she can count, she said — even led the Clark County Parent Coalition, an Arc offshoot, to approach her recently with a job offer. She’s now a part-time family resource specialist there. In this context, a “family resource” can be anything from an educational or housing opportunity to, for example, new tires to replace the bald ones on one needy mom’s car before there’s any chance of a deathly skid on a wet road, she said.

“It’s odd to be getting paid to do what I’ve been doing all this time as a volunteer,” she said.

Knowledge and power

Many of these moms told tales of being just as flummoxed, at first, by their children’s behaviors as anyone else would be.

“I’d ask everybody: ‘Have you ever seen a kid like mine?’ ” said Denise Jarrell.

It took years to determine that her daughter has Asperger’s syndrome. Before that, the girl only complained about her classmates’ totally unfathomable jokes and teasing, and the way faces — even the faces of her own family — were utterly unreadable to her. They looked like those classical comedy-and-tragedy masks, she said later.

When there was a diagnosis at last, Jarrell said, her daughter “cried tears of happiness and ran to her computer” to learn more. Naming her situation was nothing but a blessing. “There’s other kids like me!”

Joann Burton said she’s especially concerned about the kids who are delayed in some ways but quite capable and even outstanding in others. She knows one young man who’s incredibly sophisticated with computer art and design but was “handed a screwdriver” by a one-size-fits-all program that clearly didn’t grasp him, she said.

“Why isn’t he going to be a scientist? I’m afraid he’s going to push carts at Target. Our kids need a helping hand, I get that. But they still have a right to strive for whatever they want to be,” she said.

Price added that one of her children, who’s now nearing 18, has already washed enough dishes at Meals on Wheels in Battle Ground to decide that he’s aiming for something better.

“We are changing the world,” said Cherie Elvestrom. “The generation ahead of us fought to get these kids into school with the regular kids. We are fighting to get them the education and other opportunities they really need.”

“Every generation takes it further,” said Sandy Silvera.

Fun and funds

Bernhardt summed up what seemed to be the group’s attitude toward parenthood, despite the personal wear and tear: “I can’t imagine having anyone else as my kiddo. She’s taught me more about life than I’ve taught her.”

The Amazing Moms have stood together during crises such as children’s funerals and gone to battle together with bureaucratic brick walls. They’ve also celebrated milestones such as graduation and wedding ceremonies. They take the occasional trip to the beach or some other escape from reality. They’ve also undertaken some charity fun runs as a group. Bernhardt said that kind of exercise is something many of them never did before. Doing it as a group makes it a joy, she said.

The outings and activities are paid for by a rummage sale that brings in a couple thousand dollars each September, Bernhardt said.

“Moms forget to have fun,” said Bernhardt, “especially these moms.”