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Friends for life
Monday January 7, 2013
Lorrin Kain with her friends

(Photo courtesy of Karen Kain)

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Karen Kain knew that despite her daughterís severe disabilities, it was important Lorrin Kain develop mainstream friendships. It wasnít easy. But because of Kainís and Lorrinís persistence, Lorrin, who lived until she was 15 years old, died in 2009 with her mother and girlfriends by her side.

Lorrinís story

Lorrin suffered severe seizures at 6 weeks of age, which left her partially blind and unable to walk or talk. Lorrin took each breath via a tracheostomy tube and was fed through a feeding tube. "She was physically compromised but her soul was powerful," Kain said.

Lorrin wasnít expected to live beyond 3 years. Her body endured years of surgeries and chronic illness. Still, at age 9, she and her mother decided she needed friends her age. Kainís first step was to get Lorrin a canine companion. Kain, who speaks internationally to parents of disabled children, also worked with therapists to help Lorrin communicate with eye blinks. Lorrin, who had little control of her face, could smile.

"I got her into the Brownies. She did not find that best friend in Brownies, and it was awkward and ... not easy. But the point is that she met kids at a young age," Kain said.

Lorrin started taking one mainstream middle school class, and Kain made sure her daughter attended school functions, including dances. "We swam with the dolphins. I got her an adaptive bike. My daughter had no head or trunk control, yet she took her adaptive bike to school," Kain said.

To help Lorrin feel more like her peers, Kain would dress her in trendy clothes and do her hair. Lorrinís nurse would start the school year by speaking to Lorrinís class about the childís unique qualities. The nurse would encourage questions, and the students had plenty. By age 12, Lorrin had befriended a small group of girls.

They started calling Kain and asking questions about their new friend. Kain was happy to educate them. Theyíd ask whether Lorrin cried, how she slept, and if Kain liked her daughter. "I would refer to it as the cute question of the day," Kain said.

Soon, the girls were having sleepovers, going to movies, dance parties and more. The friendships changed Lorrinís life, Kain said.

The OTís role

Having friendships and being an integral part of the community are the rights of every child, said Barbara Demchick, OTR/L, MS, Towson (Md.) University.

"While we, as OTs, can do things to facilitate inclusion, it is the responsibility of everyone to be sure inclusion doesnít mean just putting that child in a classroom with 'typicalí kids and giving lip-service to the idea, but rather making sure that child is truly a part of things," Demchick said.

Inclusion means helping children of all abilities learn how to have mainstream fun. "I believe that, as OTs, we are often the first line that highlights a childís capabilities," said Paula Boylan, OTR/L, who works at a private pediatric clinic in Canton, Mass., called the Therapeutic Learning Center. "Often, children with disabilities are seen [or] defined by what they cannot do, or what skills they lack. An OTís perspective is often defined by the question, 'What can they do?í"

OTs can help by introducing children and their families to typical developmental activities, which help to make mainstream activities possible.

"OTs are uniquely qualified to help children with disabilities access mainstream activities," Boylan said. "First, their ability to analyze an activity, break it down and teach it in pieces is the first part of the equation. Secondly, [the] OTís ability to modify both environments and tasks provide compensations for the parts of the tasks [or] activities which the child is unable to perform. Finally, I believe that OTs have the gift of being able to explain these children and their unique abilities to their mainstream friends and help to facilitate the relationships."

OTs can help families find sporting resources in the community, and by using whole tasks, including sports in therapy, according to Sandra Rogers, OTR/L, PhD, professor at Pacific Universityís School of Occupational Therapy, Hillsboro, Ore. "Many times one has to pursue a number of sports before the child finds one that they enjoy and are well suited to," she said.

Rogers said she encourages parents to talk with coaches. "I think there are some activities that are easier to start with to gauge a childís interest and decrease the pressure to perform," she said.

Safe, age appropriate

Therapists should avoid encouraging activities that put children at high risk for physical injury, including high contact sports, Rogers said. "Any engagement in sports should be done with caution and use of appropriate gear and under supervision," she said.

Kain said itís important to focus on age-appropriate activities. Those are more likely to keep children interested and make them feel connected to like-aged peers, she said.

Boylan said she believes children with mainstream friendships benefit greatly from these relationships. "These children often have had little experience with typical development," she said. "They often spend an extraordinary amount of time in the company of adults, as well. By forming relationships with mainstream children, it provides invaluable modeling and example: maybe, not so much in the terms of physical examples, but in terms of social and emotional participation."

Children who do not have disabilities benefit from the friendships, too, according to Kain. One of Lorrinís best friends joins Kain to speak at functions and has told audiences that Lorrin changed her life. On a website dedicated to Lorrin (lorrinsworld.com/lorrinsworld/Welcome.html), her friends talk about why they wanted to hang out with Lorrin — because she was fun.

Kainís advice to OTs: Teach children what will help them improve their quality of life. "Maybe rolling over isnít ever going to happen and thatís not important. Maybe playing a game like Halo or Guitar Hero, something all the kids are interested in, is," Kain said. •

Lisette Hilton is a freelance writer.


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Monday January 7, 2013
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