A Special Kind of Parenting

Staff Writer
Columbus Parent

Carol Peifer wishes she didn't worry so much about her daughter Ashley Barrow's future, but the Sunbury mother knows that the 24-year-old, who was born with Down syndrome, will always need someone to advocate for her.

"I think so much more than I want to think about it," Peifer said.

Raising a child with special needs poses a unique challenge. Many of these children will never be able to live independently. Those that can may require close supervision.

The most successful special-needs parents are those who learn what options are available to their children and advocate for their needs, said Peggy Martin, a family advocate with the Ohio Department of Developmental Disabilities.

"You want to be the best advocate for your son or daughter by educating yourself," Martin said.

Parents of special-needs children must have a plan for when their children finish high school, Martin added. The main issues parents need to consider are housing, social activities and personal growth, said Martin, who has a daughter with mental-health and mental-development issues.

Finding the right housing situation can be a long, complicated process that often involves putting a person's name on a waiting list. Parents should explore options with their children's caseworker long before they would be ready for a move.

"Know what you want for your son or daughter," she said. "There's a range of options."

Martin's 34-year-old daughter has her own apartment and loves her independence. "She loves not having mom and dad's rules," Martin said.

Peifer's daughter lives with her parents but the couple's long-term plan involves moving her into her own place.

Parents also need to help their special-needs adult children develop a social life, Peifer said. "We always made it a priority to make sure Ashley has friends," she said. As parents, "you plan parties, activities, trips to the movies and involve her peers."

The need to organize social outings often increases once the child graduates from school, Martin said. The end of school often means the end of a structure and routine the young person enjoyed. It also may mean less time for socializing with peers. As a result, this is a time when some individuals with special needs may develop depression issues.

Finding social activities is critical to a special-needs adult's mental and physical health, Martin said.

"(It's) the need to have what is real," she said. "What is real is peer relationships."

Another key to success is planning for the individual's growth and development.

When Ashley was finishing school, Peifer wanted her to continue to grow and learn. Many of the programs she found focused on crafts or learning job skills, but not on academic learning.

"There were a lot of options that would watch her during the day and entertain her during the day," she said.

Peifer wanted something different for Ashley. So she and a friend started The Alternative Center, a day program in Westerville that offers an education curriculum, centered on math and reading, for individuals with disabilities.

"If given the opportunity, they want to learn," she said of her clients.

Peifer encourages parents to talk to the son or daughter about what they want for the future. "Listen to (your) adult child and see what they want," she said.

It's important that parents of adults with disabilities not make every decision for their kids, Peifer explained.

"We think because they're disabled we need to make every decision for them," she said. "They need to be encouraged to make the decisions that they can make."

Caregiving Tips for Special-Needs Families

Be informed

  • Take time to learn about your family member's condition and special need requirements.
  • Talk to health care providers and other health professionals that work with families with special needs.
  • Understand the needs of you and your family, and work together to make good choices about housing, schools, health services, and more.
  • Be aware of signs of mental or physical abuse. Notice how others care for the person with special needs.
Get support
  • Seek help from family and friends when you need it.
  • Join a local or online support group.
  • Expand your search for local and national groups that provide services, recreation and information for families with special needs, and not just a specific issue.
  • Find out about local, state, federal, or other programs that may be available.
Be an advocate
  • Ask questions, and know your rights.
  • Become familiar with the Americans with Disabilities Act, the Family Medical Leave Act, and other state and national provisions. Know how and when to apply them to your situation.
  • Inform other caregivers of any special conditions or instructions. Always remind dental or medical staff of this information each time you visit.
  • Document the medical history of your family member with special needs, and keep this information current.
  • Make sure your employer understands your circumstances or limitations. Arrange for flexible scheduling when needed.

To learn more about The Alternative Center, visit thealternativecenter.com or call 614-668-4002.