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Making Our Way: Parenting with disabilities Determination and help from friends make it work Tuesday, May 16, 2000 By Patti Murphy
To her 8- and 5-year-old daughters, it's not such a big deal that Anne McIntyre Nalepa uses a cane to keep pace when she walks them to school. Or that she often crawled while chasing them around their Millvale home when they were smaller.
The 2000 Mental Health Conference, "Self Determination: The Door to a Better Future," begins at 8:30 a.m. tomorrow in the North Campus atrium of Community College of Allegheny County.
Geri Jewell, who played Cousin Geri on the NBC sitcom "The Facts of Life," will be the keynote speaker. She was the first person with a disability to become a regular performer on a national television show. She also is a motivational speaker.
CCAC has sponsored this free, one-day conference for the past 15 years to raise awareness of disability issues in the region. Workers in the mental health field will make presentations on several topics, including community inclusion, changes in welfare, estate planning and children's issues.
The event is sponsored by the Allegheny County Department of Human Services Office of Mental Retardation/Developmental Disabilities, the Down Syndrome Center at Children's Hospital, the Down Syndrome Group of Western PA, and CCAC.
For more information, call Melinda Trempus at 412-237-6587.
Nalepa, 41, grew up confident that she would be a good parent regardless of her limitations.
"I have 26 nieces and nephews. I'm the seventh of eight children and I've been baby-sitting since I was 12," she said.
Nalepa's full-time parenting dovetails with her part-time job with The Parents with Disabilities Project in Wilkinsburg. The grant-funded information, referral and advocacy service helps people with physical limitations find ways to manage pregnancy, childbirth and parenting and assists health-care providers with disability issues. It's affiliated with the Children's Institute's Project STAR adoption program.
Nalepa and her co-worker Ruth Bechtle-Pierce, a certified health education specialist and pediatric nurse practitioner, advise callers on matters from getting good prenatal care to disciplining a toddler. They hear from folks who fear losing custody of a child or not being able to adopt one because of a disability.
They've recently started a lending library of adaptive parenting equipment, such as a bathtub molded to prevent an infant from slipping underwater while allowing a person to bathe the child with both hands if necessary. Typically, a parent would hold the child in place with one hand and bathe with the other. They also visit folks who want advice on adapting a home for a disabled adult and a baby. This can be tricky because some handicapped-accessible features are unsafe for a child. Shelves lowered for an adult in a wheelchair, for example, would have to be enclosed if there are dangerous chemicals or appliances on them.
An adaptation can be as simple as dressing a toddler in overalls so you can pull him up by the straps if lifting is a problem, Bechtle-Pierce says. Or speaking in a "traffic cop voice" as Nalepa says she does when she can't move across a room quickly enough to stop her kids from doing what they're not supposed to do.
Early in her first pregnancy, Nalepa consulted a physiatrist about her ability to position herself for a delivery in hopes for a natural childbirth. But after a labor that lasted more than 21 hours because of the weight and awkward position of the baby, doctors performed a Caesarean section. For similar reasons, Nalepa scheduled a Caesarean with her second child. Each of her daughters weighed more than 8 pounds at birth.
In the third trimester of her first pregnancy, she used two canes for support because pressure on her pelvis and sciatic nerve from the size and position of the baby made it difficult to walk. "It got to the point where I did start to stumble and fall a bit more than usual."
When Nalepa became pregnant again, she borrowed a friend's manual wheelchair. Nalepa said sitting in the chair made it easier to keep an eye on her toddler while she cooked.
Nalepa has found ways to adapt when she plays with her daughters. She likes to tell about a time they made snow angels. Nalepa dragged her foot across the ground to keep her balance while rising from the snow. Her foot wiped away the image of her angel, which troubled her oldest girl. So Nalepa moved to a spot near a fence. She made another snow angel, rolled away from it and held onto the fence as she rose. The image remained intact. Her daughters were delighted.
She feels fortunate that baby-sitters are plentiful in her family and credits friends for help with tasks such as decorating at the holidays and fixing meals when her youngest daughter had multiple surgeries for an extended respiratory illness.
Nalepa has met new challenges since she and her husband separated last fall. She doesn't drive, and her husband drove the family places. Nalepa now relies heavily on buses, but generally walks or gets rides from others when she's with her daughters.
On rough days, Nalepa heeds the advice she gives other moms with disabilities: don't try to be Supermom, keep a flexible work schedule, take time out for yourself, remember that housework can wait.
And get some rest, she says. "You can't enjoy parenting unless you're well rested."
The Parents with Disabilities Project is seeking reusable items for its adaptive equipment library. You can reach the project at (412) 244-3081 or (800) 683-5898.
Patti Murphy writes a monthly column on disabilities. You can e-mail her at pattimurf@aol.com
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