SLN-Related on 8/21/2009: Article- Life is tough when sibling has disability

Please read- the SLN is mentioned and SLN members are quoted. Nicely done!

-John

http://www.mysanantonio.com/news/Life_is_tough_when_sibling_has_disability.html

Life is tough when sibling has disability

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By Elizabeth Allen – Express-News

Even when 7-year-old Fanny Gunn gets mad at her twin brother, Lennon, for playing too rough, she’s expected to keep her cool. When her friends come over, she’s expected to let them know they can’t shut him out of their play.

Lennon has autism, and his behavior may alternate between long bouts of contentedly holding a spoon and constant screaming, so it’s not easy. But Fanny gets a lot of practice.

When a friend doesn’t understand Lennon’s autism, she will explain: “He has a different brain.”

“It’s a lot hard not to yell at him,” Fanny admitted. “Sometimes there’s littler kids than us, and I’m worried that he’s going to go after them like (he goes after) me.”

Life can be a little tougher for siblings of children with disabilities. Their brother or sister often gets the lion’s share of parents’ attention, and the siblings often must pitch in more than most. They may find themselves thrust into the jobs of translator and protector.

“I don’t want to rob Fanny of any of her childhood, but at the same time I have no choice but to teach her that she has no choice but to consider Lennon’s feelings, and that she’s the ambassador when it comes to him and other children,” said the twins’ mother, Shannon Gunn.

As awareness grows of the “other” siblings’ roles, therapy groups and support networks are forming to help them.

But along with the embarrassment and resentment, even very young siblings of children with disabilities can express loyalty, love and a deepened understanding of human nature.

Maria Medellin thinks her children Amanda, 13, and Fernando, 17, are more patient and accepting of people because of their little sister Adela.

Both help care for 9-year-old Adela, which is no easy task. With cerebral palsy, Adela is legally blind and can’t walk — but she’s a fast crawler. She speaks in moans and grunts. She wears a diaper and is fed with a feeding tube.

She is preternaturally strong, but in many ways an eternal baby, always growing bigger, but never growing up.

On a recent summer morning, Fernando mixed Adela’s diet of water and canned liquid food and gently inserted the feeding tube into Adela’s abdomen. He pulled the girl’s T-shirt back down with a little pat while she patiently sat for him. Then, bit by bit, the teen poured the liquid into the tube, holding it high so the line wouldn’t pinch.

“I have to be nice to my sisters because they’re my only sisters, and I’m their only brother,” he said, and paused. “Sometimes I wish I had another brother.”

The introverted Amanda shares companionship with her little sister that transcends their abilities. Besides changing her diaper, Amanda plays with Adela, and even though she has her own room, she sleeps in a bed squeezed next to Adela’s crib.

“I like to be with my sister because I ..... feel lonely without her,” said the girl, struggling through her shyness for words. “The only thing I don’t like is when people stare at my sister. ..... I just stare back at them.”

Normal and special-needs siblings often have mutually giving relationships, said Tamar Heller, director of the Department of Disability and Human Development at the University of Illinois and a founder of the national Sibling Leadership Network.

“They can be very sweet, very loyal, very helpful,” said Heller, whose sister has cerebral palsy.

That’s true with Dylan Palmer. The 17-year-old with autism has a sweetness that even strangers can see, said his 11-year-old sister Chloe.

“People like him, like, old ladies especially, because they can talk to him, and say nice things to him,” Chloe said.

Chloe downplayed embarrassment about Dylan, but admitted the feeling can creep in “when he gets really loud.”

One recent day, while waiting in a store checkout line, Dylan needed to visit the bathroom. His mother, Cindy Palmer, warned, “Dylan, walk!”

But it was too late. The gangly teen had already stretched into a happy lope, his mouth open in an excited yell. Heads turned to watch him run the length of the store.

“I was the one that was embarrassed and upset,” Palmer said. “It was Chloe who was saying, ‘It’s OK, Mom, nobody cares.’.

Heller said that’s normal.

 “Particularly with intellectual disabilities,” she said, “the nondisabled sibling is somewhere between a parent and a sibling.”

Now an adult who helped her mother and siblings raise two brothers with disabilities, and who now must coordinate their care, Joyce Clemons has no trouble articulating what is difficult, and what is wonderful, about her family.

Until she left home for college, it was primarily Clemons and one brother who helped with Glenn and Gordon, who have organic brain dysfunction and profound mental retardation with autism, respectively.

It wasn’t unusual for Gordon to strip naked and run down the street, she said, and it was usually her job to haul him back. Sometimes he would smear his feces on the bathroom walls. Clemons cleaned it up.

But she also remembers, as a small girl, beating up kids who called him a retard, and she considers him an inherent innocent and a moral guidepost.

 “Gordon set a standard for me that I could never live up to,” Clemons said.

Clemons is part of Ohio Sibs, an adult support network that helps people connect on emotional and practical issues dealing with their roles as siblings of people with disabilities.

There’s more understanding these days for the kids who either feel sidelined by their siblings, or — more often in the past — were protected by their parents from an institutionalized child, said Tom Fish, director of Social Work and Family Support Services at Ohio State University.

Fish founded Ohio Sibs and worked with Heller on the Sibling Leadership Network.

“Years ago, parents used to think it was their issue,” Fish said. “You have situations like “Rain Man,” or situations where it was a family secret, because parents thought it was their cross to bear.”

The biggest complaint Fish hears now is that “their parents don’t love them as much as the other child, and that they don’t get as much attention. And you know what? Sometimes they don’t.”

That can put guilty parents on the defensive, he said, which is the wrong position to take.

“We encourage parents to stand their ground and say, ‘Listen, this is the way it is. It’s our family’s issue, and we’re going to meet it head on.”

Meeting it head on never has been a question for Maria Medellin, but she still feels conflicted about what she’s asking of her two older children.

While she holds out hope that Adela will become more independent, Medellin says doctors aren’t optimistic about the 9-year-old’s development. So she’s told her other children to prepare to take over Adela’s care.

“I want them to follow whatever path they’re going to follow, but I want them to know she needs them, too, and will always be a part of them,” she said. “And sometimes I wrestle with that in myself. I wonder if that’s fair to say to them.”

 

 

-John

_________

John Kramer

Steering Committee Co-Chair

The Sibling Leadership Network

john.kramer@sibleadership.com

312-436-1839

 

http://sibleadership.blogspot.com/

http://twitter.com/sibleadership

 

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