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News › Siblings talk about living with the disabled
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Various Articles: Siblings talk about living with the disabled
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Posted by Sylvia on Tuesday, March 02, 2004 (22:19:15)
Daily Herald 29/02/2004
By Jill Fellow
Sarah Ricks, a 21-year-old BYU student, said she loves her 19-year-old sister Rachel, but living with a disabled sibling made for a unique childhood.
"When your friends are helping out around the house by taking out the trash, you're thinking 'I help bathe and change my sister's diapers who is only a year younger than me,' " Ricks said.
Sarah Ricks' sister is deaf, blind, severely autistic and unable to move most of her body. Sarah Ricks said these disabilities made it hard for her family to go places and when friends came to the house, it was hard to answer all their questions and explain why her sister, so close to their age, was rolling around on the floor.
Ricks was one of a dozen volunteers and trained facilitators -- many of whom have a disabled child or sibling -- who brought a national support group for children to Utah County on Saturday in a new program known as Sibshops.
Sibshops is a once-a-month program designed to help siblings of disabled children meet friends with their situation while they address both the good and bad parts about living with a disabled sibling.
The Seattle-based program was designed by Donald Meyers -- the director of the Sibling Support Project of the Arc of the United States -- in 1994 and has since been replicated in eight countries.
After Utah County parents expressed a need for a sibling program, directors at Wasatch Mental Health, Brigham Young University, Nebo School District, the Autism Society of Utah County and Kids on the Move came together to sponsor Sibshops in Utah Valley.
Fifteen children attended Saturday's activity from 10:30 a.m. to noon, and almost twice as many are expected to join the group next month on March 20 at Kids on the Move in Orem. Parents are charged $5 per child for supplies and lunch because the state has not yet funded the sibling program.
While the main goal of Sibshops is to address the children's concerns and make them feel comfortable with their unique sibling and situation, the workshops look nothing like therapy sessions, said Tina Dyches, a special education professor at BYU.
"We don't have a 12-step program where you start with your name and issue," Dyches said. "We're not focused on the negative parts of living with someone with special needs, but later we will talk about some of the bad parts and we'll even let the kids make their own solutions."
The siblings play lots of trust and group-building games at a Sibshop before they sit down together and share some of their private feelings.
"I felt invisible when my sister was first born. "
"It's hard. My mom spends most of her free time with my brother because he needs so much extra help."
"Sometimes I think it is all my fault, I guess, because we are twins."
These are typical feelings that the siblings, ages 7 to 13, often hold inside, said Erin Gardner, a facilitator from Kids on the Move.
"They feel isolated," she said. "The feel that there is nobody out there who understands them or who is in the same situation."
Some kids feel frustrated because their sibling gets all the attention. Some worry that they don't have friends who understand them, and others feel the brunt of having to grow up faster than their peers.
Other kids might feel their sibling's disability is their fault because of something they might have done wrong.
"A kid might think like this: 'My brother has Down syndrome because I pushed him off his blanket when he was a baby and a week later he was diagnosed.' A lot of kids draw those kinds of conclusions," Gardner said.
Most of the children who attended Saturday's Sibshop have siblings with autism, which has become a national epidemic and can be very hard for siblings, Gardner said.
"A lot of those siblings really struggle because nobody really understands autism, and a lot of people just see a normal-looking child doing a lot of inappropriate things."
Judy Carter has a three-year-old autistic son named Christopher. She brought her three older children to a small test run of Sibshops last year.
"It really helped them get confidence," Carter said. "They came and they even had a cheer. And it was the first time that my children met other siblings of disabled children."
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Posted by Sylvia on Tuesday, March 02, 2004 (22:19:15) (1974 reads)
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