Parents helping parents of special needs children

Kim Klupenger learned long ago there are few resources for parents whose children are diagnosed with a disability.

Often, the best they can hope for is a brochure from the doctor that might include their rights to special education. Many turn to the Internet to better understand their child's future, only to find worst-case scenarios.

"It's like losing someone," said Jenny Cavarno. Parents go through the same stages of denial, anger and depression.

Klupenger and Cavarno have been there, and now, they are there for other parents.

Advocates for Children That Have Special Needs, or ACTSN (pronounced "action"), is the official name of their new organization, which is based in Klupenger's Wilsonville home. They are in the process of applying for nonprofit status.

The group specializes in helping parents negotiate the medical and educational worlds as well as working with families -- educating grandparents, aunts and uncles, and siblings.

Parents are often still dealing with the shock and emotion of the diagnosis when they are thrust into the world of special needs with recommendations for early intervention, occupational therapy, speech pathology and individual education plans.

Many have little idea how to advocate for their children.

"They may stay in denial until they find others in the same boat," said Shawn Davis, an ACTSN member.

Klupenger has sat through individual education plan meetings with parents as they work out with teachers what is best for their children.

She and Cavarno answer e-mails and telephone calls from parents throughout the area, including Lake Oswego, Hillsboro, Salem and Oregon City.

Some are seeking recommendations for evaluations and others are "meltdowns," Klupenger said.

If she and Cavarno don't know the answer, they rely on the wealth of experience from their membership of 40 and growing, Klupenger said.

Members have children with a myriad of diagnoses -- autism, fragile X syndrome, Down syndrome, attention deficit disorder.

Parents are their children's best advocates, the women said. So, much of their organization's support is through training and workshops, arming the parents with information.

Eventually, Klupenger said, she wants to help struggling parents pay for their children's therapies, which are essential, especially in the early years.

"The cost is often devastating," Klupenger said. Therapies and medical visits can exceed $20,000 a year, with little covered by insurance.

While the group is there to support and offer advice, it is also a place to share funny moments that other parents might not understand, Davis said.

"You can laugh about things with them," she said. "And share in victory celebrations."