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Having a Sibling With Autism
Bluegrass music is blaring. Heidi Wettlaufer takes the hand of one of the girls and tells her to grab another hand until all 16 children in the room are linked and weaving in and out of each other—resembling a needle and thread. The laughter seems to drown out the music and break the ice.
The activity is part of a half-day workshop known as the Sibling Group, offered by the Children’s Institute at the annual National Autism Conference that takes place at Penn State each summer. “They spend the conference week in a classroom with mostly children with autism. The Sibling Group is a time for them to be around typically developing kids who share their experience as a sibling. It’s also a time for them to not be ‘the helper,’” said Wettlaufer, who helped coordinate the Children’s Institute for six years. “It’s their time and I think that’s important.”
The Pennsylvania Training and Technical Assistance Network, or PaTTAN, hosts the autism conference with the Pennsylvania Department of Public Welfare and Penn State’s College of Education, Continuing Education Office and Office of Statewide Programs. PaTTAN partners with Central Intermediate Unit 10, a Pennsylvania educational service agency, to provide the Children’s Institute.
A camp-like experience
The institute creates a camp-like experience for the children of parents attending the conference so parents can attend sessions, network and learn how to raise autism awareness in their communities. While the institute offers many activities during the week, it’s in the sibling workshop that children who live with an autistic sister or brother get to spend quality, one-on-one time with peers—playing games, sharing stories from home and validating each other’s thoughts and emotions.
“The kids express a lot of love and devotion for their siblings. They also have other feelings and experiences that may not be easy to express or understand,” said Wettlaufer. “For example: ‘Why did this happen to my sister or brother? Why am I okay? Is it okay to wish my parents could spend more time with me? Is it okay that I’m annoyed sometimes?’ The sibling group is a safe opportunity for them to share and discuss these feelings with others who have similar experiences and questions, all while having lots of fun.”
Wettlaufer also had a sibling with a severe disability. She added, “There’s a remarkable knowing from the kids who have a sibling with autism that: ‘My sibling makes me a more understanding human being.’ If you met these children, I think you would agree with them.”
In addition to the Sibling Group, the children spend the week mixed in with each other’s siblings with autism doing arts and crafts, playing outside and even performing in a musical.
Wendie Mancuso, a conference participant who has a 12-year-old son with autism, said about the institute: “You always feel like you’re justifying the things that your child does or the things that your child needs. That’s the great thing about being here. I don’t have to justify Daniel here. I don’t have to explain everything that happens with him. The Children’s Institute understands what he’s going through and they accept him the way he is.”
There are 100 spots available each year at the institute. Organizers encourage parents to apply online a few months before the conference takes place. For more information on the National Autism Conference and Children’s Institute held at Penn State and organized by Penn State Conferences, visit: http://www.outreach.psu.edu/programs/autism.