'Ultimate sleepover party' for patients and siblings

The scene at Hashawha Environmental Center in Westminster Friday evening was filled with the friendly chaos typical of the start of summer camp. Parents unloaded gear and gave last-minute instructions. Ubiquitous counselors welcomed visitors and ushered them to cabins. And chatty children seemed eager to be on their own.

Well before the dinner bell, one girl was so enthralled with her bunk that she spread her sleeping bag across it and laid down to test the accommodations. She was so comfortable that only the promise of craft-making with her older sister could draw her away.

The Kennedy Krieger Institute in Baltimore organized its third annual Camp S.O.A.R or Sibling Outdoor Adventure Retreat this weekend. About half of the 39 campers are its young patients, who deal daily with physical and mental challenges. The other campers are their siblings. The counselors, about 60 volunteers, most of them on staff at the institute, organize activities, campfire gatherings and games all while attending to the needs of children with traumatic brain injuries, cerebral palsy, Down Syndrome and paralysis.

The camp is not only about fun and games. It was designed to "strengthen the bond between sibs as they learn to accept each other's differences, limitations and strengths," said Elise Babbitt Welker, the institute's director of communications.

Sherry Fisher, special activities coordinator at the institute, said she knows of no better therapy than an "ultimate sleepover party" at a camp that brings together animals, nature and kids.

Kelly Marcue, camp director and a therapist at the institute, said the children, their parents and the staff reap the benefits of this one weekend.

"Everyone enjoys it so much and looks forward to the next camp," Marcue said. "I have seen campers afraid to get out of the family car and by the end of the weekend, they don't want to leave. When parents return, they say they can see the difference in their children."

Hashawha, Carroll County's outdoor school, offers all the amenities that make a camp possible for disabled children, she said.

"Everything is accessible," she said. "There are homemade meals, a pond, a swimming pool, craft areas and cabins. I can't put into words what this camp means to these children. They talk about it all year."

Ashley and Erica Horst of Columbia, Pa., were newcomers ready for the adventure. Their mother Julie Horst admitted to anxiety about leaving 13-year-old Ashley overnight for the first time. The perky pre-teen has severe food allergies, a chromosomal disorder and must follow a strict diet. She often has to be coaxed into eating.

From the moment the family arrived, Ashley's enthusiasm was apparent, her mother said. She immediately tried out the playground and asked for a swim. When she and her 15-year-old sister made a family flag, Ashley turned the O in Horst into a smiley face.

"I am so impressed with all the preparations and attention to detail," said Julie Horst. "They made all the accommodations for her formula, meds and went over and beyond to make sure there was food for her. They brought in a bag of food just for her. I am comfortable because I know they have taken so many precautions. There's a nurse here and her sister is here. I am hoping they connect without all the medical issues they have at home."

Erica wondered what it would be like to share a room with her younger sister, who, she said, "is a big responsibility that I don't mind."

"The goal is to give the sibling a break from feeling responsible and just enjoy each other's company," Julie Horst said.

The camp lowered the age limit a year to allow Olivia Wilkinson, 7, to join her sister Lily, 10, and their 13-year-old brother Will. Summer Dunn of Sparks left her three children with a kiss good-bye and a "be good." Quite a difference from last year, when she sat in the parking lot and cried, worried that Lily, who needs constant attention, would be lost without her mother.

"I am not nervous at all," she said. "Lily and Will loved it last year. They keep the kids so busy there is no time to miss me."

Lily has been in a wheelchair since a car accident that claimed the life of her father and left her with a spinal cord injury eight years ago. She came to camp with her older brother last year and looked forward to coming back.

"At home, my son is a huge help," Dunn said. "But he is not here to help with his sister. He is here to bond with her and have fun with her. I hope this weekend brings Lily and Olivia closer together, too. Sometimes, there is a little animosity because Olivia can do the things Lily can't."

The three siblings spelled WILKINSON in bold letters atop their family flag and then, added a string of letters to form their first names under the appropriate spots. Under the K, they added the letters for Kennedy Krieger.

Kevin and Lisa Ringham of Bristow, Va., dropped off Sarah, 12, and Emily, 14, who has survived brain cancer but deals with mobility issues. Sarah reminded her sister of all the activities they would be doing again, like the campfire, the s'mores and the canoes.

"This is all very cool," said Emily. "I like just being away with my sister. We are having girl time."

Their parents looked forward to a child-free weekend.

"This is our only chance to leave our daughter with trusted professionals and to let a kid in a wheelchair have fun and us not be around," said Kevin Ringham. "It's a great time away for both of them."

"I am going to do nothing," said Lisa Ringham. "Maybe I will read or take a nap."

Parents were invited to check in at any time by phone. To help ensure they relaxed at home, parents all left with a picnic basket filled with snacks, an apple pie and a ticket to an 11 a.m. talent show Sunday at Hashawha.


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