Learning skills to live an independent life

Karen Nave starts with S.O.S pads. "Do not use these on good dishes or pans with a shiny finish," she tells the seven students sitting around her. Following her lead, they practice working up a blue lather on some greasy skillets laid out on the table. She moves on to sponges, Comet and Lysol.

Nave is teaching a life skills class for seven developmentally disabled students at Havre Middle School. Every morning she covers practical things the students will need to know to live as independently as possible: reading warning labels, doing laundry, cooking, cleaning.

"Our primary goal, just like any other kid, is to make them the most productive, well-rounded adult they can be," Nave said. That means different things to each of these students, she said, from reading, communication and social skills to personal hygiene.

One of the students, Pam Laufer, 13, said she enjoys her reading class the best. She said she wants to go to college to study art, and also work as a bartender.

"I want to be a bartender because my aunt was a bartender. I want to take after her," she said.

Another student, Becca Buskirk, 13, said she likes her social studies class the best. She said she wants to go to high school.

Both students said the Special Olympics are one of their favorite things to do outside school. Becca runs the 50-meter dash and Pam runs the 100.

Annie Engelhardt, 15, likes her science class the best, she said, before picking up a book about animals and reading aloud about the honey opossum.

"Annie's a very information-oriented kid," said Nave, sitting nearby. "She likes to read for information more than stories." Annie can rattle off the nine planets as quickly as her own name.

Annie said she doesn't know what job she wants after she graduates, but for now she helps run her family's pet hotel and grooming service. Her mother, Mary Engelhardt, said some day Annie can use the business to support herself if she needs to, with supervision.

One period later, Adam Moog, 18, was sorting through a bucket of bean bags, tennis balls and socks and placing them in different buckets.

"Eventually we're doing this so he can sort colored socks from white socks," said Margo Chinadle, a paraprofessional who works in Nave's classroom, as she made him repeat the sorting until he gets it right.

Adam was brain damaged by a measles, mumps and rubella vaccine when he was about 15 months old. He cannot speak, but he eagerly greets visitors by pressing buttons on a device that will say a range of 32 simple phrases.

"What's next?" he said with the push of a button after completing the sorting.

Nave called Adam over to begin an exercise where she writes tasks for him on a dry-erase board - asking him to point to her shoe, or put a pillow on the piano.

"Work, work, work," he complains good-naturedly with another button.

The transition

Whether these students are planning to make transitions to college, jobs, or simply an adult life with their families, the process from childhood to adulthood is a complex one, drawing on several local service providers, medical personnel, and, for the families, thousands of dollars and time commitments that may last a lifetime.

In the past, special needs children, including the developmentally disabled, were not allowed to or expected to participate in society, said Kim Kirby, who has been a special education teacher at Havre High School for more than 20 years. They were often put in special schools, and later, institutions.

The philosophy has shifted: special needs children are integrated into high school classes with their peers as much as possible. Professionals help them plan for their transition to adult life. "To be able to contribute as much as they can to their own well-being and to the community," Kirby said.

Usually about once a year a small group consisting of a student's teachers, parents, a school administrator and other officials sit down to develop a plan. They chart out the student's needs, interests, and what he or she would like to do after high school. About 76 children, not all of whom are developmentally disabled, now have plans of that kind at the high school, Kirby said.

Darcy Bronec was hired this fall as transition coordinator for special needs children at Havre High School. She has been giving surveys to the underclassmen to identify potential career interests, and is implementing a voluntary job shadowing program. Their job goals are as diverse as any group of students, from teachers and nurses to railroad employees.

"They want success," she said. "They want everything you and I want, so they need to be given an opportunity to prove themselves to themselves and others."

Bronec also works with community services like the Job Corps, the Havre Job Service, Montana State University-Northern's Educational Opportunities Center, and HRDC.

As the students go where they hope to go, their families receive help from a variety of sources, from local programs like Opportunity Resources, Inc. and Quality Life Concepts, Inc. to federal ones like Social Security and Medicaid.

The system is not flawless.

Nave said small communities like Havre often don't have public transportation, which can make it difficult for people with developmental disabilities.

She also said many of the people who provide care to those with disabilities are poorly paid, so it's harder to keep qualified workers, and turnover is high.

Finally she pointed to a reluctance to support people with disabilities because of productivity issues.

"The truth is that these are expensive kids. So there's a reluctance - that's a social reluctance - (to fund them) because kids with developmental disabilities are not going to be quote 'productive taxpayers,'" she said.

The cost to a taxpayers pales next to what a parent endures. Engelhardt said she only recently finished paying off the medical bills from when Annie was born. Parents need time to themselves to regroup after the demands of a special needs child, she said, but caregivers are expensive.

The Moogs said the services available today are much better than they were when Adam was young, and they rave about the improvements he has made in Havre schools. But the system could be centralized and simplified, they say. Health care providers, for example, usually won't accept each other's forms, which means endless appointments and paperwork for the Moogs.

More problematic, the Moogs said, services are being threatened at the state level. This year, state money to help parents buy disposable adult diapers was nearly cut. It stayed after a last-minute email campaign, but money for wet wipes was axed. Small change, of course, compared to the wheelchairs and other expensive equipment they must try to buy.

Families that make more than a certain amount will not qualify for Medicaid.

"They don't want you to get ahead," Ken Moog said. "They're punishing you for having a disabled child."

"If you make too much to qualify and not enough to meet your needs, that's when you get in trouble," Lita Moog said.

The Moogs will be taking care of Adam for their entire lives. Adam's sister, Devon, 20, is also his legal guardian. If something happens to their parents, Adam will be her responsibility, no matter where she is in life, convenient or not. She does not seem cowed by the prospect.

"He's a little brother," she said simply.

Milestones

Some people with developmental disabilities may not experience some of the milestones of life - some never marry or have children, or never live on their own - but they and their families move in an utterly human realm of individual personalities, hopes and fears, and dreams.

Nave said finding the student underneath the exterior is part of what she enjoys about her job.

"Because they can be such a mystery some times," she said. "It's fun to search that out - to find that cool kid that's underneath what most people see as a kid with a disability."

Finding that is in part a matter of adjusting commonly held views of the purpose of life, and definitions of achievement.

"For the most part the kids that I've worked with are happy kids," Nave said. "They like themselves. Why should they have to live up to standards of what life should be?"

Nave remembers discovering that one of her students loved George Strait. "It wasn't just that she liked country music - she liked George Strait. It took us a long time to realize that she liked George Strait more than other things," he said. "It's a neat thing to know someone likes George Strait."

Kirby said people's fears often prevent them from clearly seeing people with developmental disabilities.

"The biggest mistake they make is they look at the outside and make their determination of that individual's worth by maybe some drool on a chin or their handwriting or their inability to express themselves in a conventional way," he said. "I really think that a lot of the community is afraid of these individuals."

That doesn't mean the families can pretend the disabilities don't exist - they have to adjust.

"Everything's changed," Ken Moog said. "You can't go take him fishing, hunting, all the things a guy does with a normal son. There's really nothing you can do about it except accept it."

Instead, the Moogs find things they can do together, like taking trips together, and in the end becomes stronger.

"A person digs deep - way down deep - finds strength you don't know you had," Lita Moog said.

"You learn to devote your whole life," Engelhardt said. "This is a commitment that is going to take your whole heart and soul."

For Engelhardt, there are always uncertainties of how far her daughter can go. She can only accept her daughter for who she is, she said.

"I concentrate on what she can do," Engelhardt said. "I don't concentrate on what she can't do because you would get pulled down into a deep black hole if you did. ... I had a short period when she was young when I did grieve, but I did it and moved on."

Two years ago at an annual convention for people with developmental disabilities in Billings, a boy in a wheelchair with cerebral palsy asked Annie to dance. She danced, but was uncomfortable touching the boy's hands, Engelhardt said.

"I don't know if she'll grow up and fall in love or be married," Engelhardt said, but added Annie has the same feelings as any normal teenager.

That does not exclude one of the most deep-seated of human drives. "When she had her period, her next question was, 'When will I have my baby?'" Engelhardt said.

Engelhardt can only wonder along with her daughter, and answer these uncertainties with the response she has learned from experience: "Her tomorrows are unknown."