Wednesday, April 21, 2010

Parenting and disability can build wonderful family bond

From CNN:

When Sarah Kovac watches her son, Ethan, crawl or grab objects, she feels proud, but also has mixed emotions. Already, the 8-month-old has abilities Kovac never had.

"He relies on me, but he's already able to do things that I can't, which is kind of a strange combination of feelings," said Kovac, 26, of St. Joseph, Missouri.

Kovac has a condition called arthrogryposis multiplex congenita, a rare disorder that involves multiple joint deformities from birth. From the tops of her shoulders to her fingertips, most of her joints don't move. She hopes that overcoming the challenges of her disability will be a point of bonding for her and her son.

Kovac was one of many iReporters with disabilities who shared their insights and frustrations about parenting with disabilities with CNN. They said that although there are certain physical things they cannot do, they have been determined to be good parents and show their children the importance of overcoming obstacles and reaching goals.

The relationship between abled children and disabled parents is explored in a new television series produced by actress Marlee Matlin called "My Deaf Family." The show is a reality series that looks at a family in which two children and their parents are deaf, but two brothers are hearing.

" 'My Deaf Family' shows differences, and not disabilities," Matlin said through her interpreter Jack Jason. When there are deaf members of a family, communication is very visual; you can't scream into the next room. "It's important to be present," said Matlin, who was the only deaf person in her family growing up.

In the short pilot for the show, available on YouTube, the family talks about having "deafhood" as an identity, and as more of a culture than a disability. Matlin noted that although the parents are quite independent -- they don't own a land line telephone and their hearing son Jared does not speak to them in spoken English -- there is also a tight parent-child bond.

"You as a child can't help but look out for your parents who are deaf, and you as a parent can't help but be concerned for your child who is hearing," Matlin said. "Hearing children of deaf parents grow up to be very close to their parents."

Marilyn Morgan of Pompton Plains, New Jersey, has cerebral palsy and so does her husband. Their children have a special awareness of people with disabilities, she said. (The family is pictured.)

Whereas some people stare and assume that she and her husband have mental deficiencies, their children "see our intelligence," she said.

"It does give us a special relationship," she said. "They have a different understanding because of our situation, but the good thing is, it doesn't interfere with what they can do. They're not limited because of me being in a chair."

When Morgan sees her daughter, Maggie, 14, running on the track team, "I feel like she's living my dreams by just watching her," she said. Morgan is similarly thrilled to see her son, Brendan, exploring nature with the Boy Scouts in ways that she couldn't. Read her iReport

Brendan, 12, frequently helps his mother with things like reaching for items at the grocery store, but said he feels he can do anything a kid with parents who don't have cerebral palsy can do. His mother, in turn, helps him, too.

"Anything that she can do with me, like come to Boy Scout meetings, come to my baseball games, get me to my baseball games, go to campsites ... much as she can help, she will help," he said.

Adam Macke, 12, of Decatur, Illinois, also knows what it's like to have a parent with cerebral palsy. His father, Todd, doesn't need a wheelchair, but his condition affects his walking and speech. Adam said some people laugh at his dad because he is different. Adam, though, looks up to his father.

"Even though people make fun of him, and he's different, he's still confident in himself," Adam said. Read his father's iReport

Sarah Pietro, 30, of Ishpeming, Michigan, has seen both sides of the story. Both her parents had polio and her mother's left leg is fused at the knee and ankle, but Pietro grew up able-bodied. She remembers missing being able to ride bikes, run or play sports with her mother because of her disability. Read her iReport

Seven years ago, when Pietro was working as a paramedic, the ambulance she was in flipped over. Pietro was left with a spinal cord injury that made her a paraplegic at age 23.

Now, she said she feels closer to her mother, being more aware of the challenges that people with disabilities face daily. The women did adaptive kayaking together two years ago and are planning another trip this summer.

"For us to be able to do something together was really great," she said.

Still, Pietro has made the hard decision to not have children, partly because of what she would not be able to do as a disabled parent: lifting children and activities such as bike-riding that she missed out on with her own mother.

"There are ways to do and participate, but I do believe I would be short-changing myself in being able to enjoy everything that you could enjoy with a child," she said.

Jennifer Kreutzer, a mother of two who has primarily used a wheelchair since a skiing accident at age 16, said she believes she is doing everything she would want to do with her kids.

The family has a special bond because they're involved in activities others aren't, Kreutzer said. She and her 4-year-old and 7-year-old daughters do fundraising for wheelchair sports activities; the girls also help move around specialized wheelchairs for sports.

Recently when she asked her 7-year-old daughter if she should go to her first communion in a wheelchair or leg braces, the child told her, "Whatever you feel is most comfortable for you," Kreutzer said. "That coming out of a 7-year-old girl is very moving."

Kreutzer, 30, of Wichita, Kansas, is also the leader of her daughters' Brownie Girl Scout troop.

"I hope to teach the girls in my troop that no matter what disability or other problem gets in their way, they can strive to reach the goals they set for themselves, no matter what," she wrote in her iReport.

Kovac received her share of concerns from others about how she would carry a newborn and bathe him. She even got Facebook messages asking such questions from people she rarely spoke with. But she was determined to find ways around her disability.

Her answer: Use feet instead of hands. All her life, Kovac has been using her toes for gripping when she can't use her fingers. Today, she changes diapers, spoon-feeds her son, types and drives with her feet and toes.

"There's nothing you can't do, nothing you can't find your way around," she said.

Kovac is hopeful about her relationship with her son as he grows up, but remains somewhat fearful about their dynamic once he gets to school, where other children might pick on him.

"I don't know if he's going to feel embarrassed of me or protective of me," she said.