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Adults with Down’s: Finding a path to independent living

December 17th, 2013 Posted in Arts and Life

By Mitch Henline

CACHE VALLEY — Kam Cheshire grew up in Hyrum, Utah, with his parents, two older brothers and a little sister. Kam has Down syndrome – a chromosomal disorder that according to the National Down Syndrome Society affects one in every 691 babies. His parents, Kim and Sue Cheshire, say when Kam’s siblings grew up and started moving out of the house and on with life, Kam felt left behind.

“When his siblings started getting married, he wanted to get married too,” Sue Cheshire said. “When his brothers went on a mission he wanted to go on a mission too. He realized they got to do things and he wanted to do them too.”

Kae Lynn Beecher is the executive director of Cache Employment & Training Center (CETC), an organization that helps people with disabilities learn vocational skills and live independently. Beecher says situations where individuals with disabilities feel left behind or that they are not progressing can be common.

“One of our consumers came to mind,” she said. “She grew up in a cul-de-sac with all of her cousins. It was kind of a family subdivision. All of her cousins graduated from high school and moved on, and it was really hard for her because she wasn’t getting married. She wasn’t going to college. What was there for her? The family was so close right there, it was really hard for her to see them all move on.”

Sandra Smith, day services director at CETC, agrees with Beecher that periods of transitioning can be tough for people with disabilities. She said there are several individuals in the CETC program who are in their 30s and experiencing it, because they are the oldest sibling and all of their younger siblings are growing up and moving out. “The one particular young lady that comes to mind is struggling very hard with her younger siblings moving on and being married,” she said. “We see some of that reflect in her daily performance here at Cache [Employment & Training Center]. We work closely with the family to assist in whatever ways we can here. In some individuals we have a bit of a behavior plan. Others we just kind of do some coaching every morning. Perhaps look at the good things that are happening and really try to focus on achievements because they do feel like they are standing in one place and not moving forward.”

Smith says there are many options for parents of children with disabilities to help them fill their lives with purpose, but that it is important to plan far in advance.

“There are a lot of options in the community, even for those who don’t have funding, if they investigate ahead,” Smith said. “And also keep in mind what they perceive for their child. They might have a plan of what they think their child could do in for their future. In many cases a client surprises their parents themselves and achieves a lot more than we think they are capable of doing.”

Some of the programs available include job training, community involvement, group homes and other programs that help the individuals live more independently. One of the programs that can help those with disabilities is the use of assistive technology. Assistive technology can include everything from devices that help with mobility to apps that can help with communication.

Storee Powell,  marketing and public relations specialist for the Utah Assistive Technology Program, says assistive technology can give people with disabilities the extra help they need. “A lot of times, parents aren’t aware about assistive technology that is available out there for their students as they transition,” she said. “A lot of times people with Down syndrome, from what I know, are quite capable of living quite independently and having certain jobs but they do need that little bit of extra help.”

Many of the iPad apps that are available for people with disabilities help with communication, motor skills, hearing assistance, vision and social skills.

“We just want people to be independent and have the same quality of life everybody else expects,” Powell said. “I think sometimes people without disabilities may perceive that people with disabilities — you know maybe particularly people with Down syndrome — that they don’t have dreams, they don’t have desires. But they do. We’re just kind of here to give them that extra little bit of help so they can accomplish those things.”

The Cheshires said that allowing Kam to pursue his interests, find work that he enjoys and get involved in the community helped him overcome his feelings of being left behind. “When he was first born, we didn’t know a lot about Down syndrome. So when he was first born we felt bad for ourselves,” Kim Cheshire said. “We put limits that he wouldn’t be able to do certain things, and we didn’t know. We changed a lot, almost a 360, and decided to let him try all sorts of things.”

Today, Kam enjoys going to work, helping with the children’s music in church every Sunday and playing with his nieces and nephews. He is a big fan of the Utah Jazz and has nearly 200 medals in the Special Olympics. “In 2007 he was inducted into the Utah Special Olympics Hall of Fame,” Kim Cheshire said. “They only induct maybe one or two a year –maybe three. It’s amazing because he’s done a lot of things our other children haven’t done.”

Kim Cheshire said that if he were to give advice to other parents with children who have disabilities, it would be to not put limits on their children. “Don’t limit,” he said. “That was something we learned early is not to limit and to experiment and try. Some things didn’t work and some things did.”

Sue Cheshire said there are many things Kam has accomplished that he would not be able to if he didn’t have his disability. “I think he has touched lots of lives,” she said. “One family, particularly. When he was younger they found out they couldn’t have children. Because of their association with Kam, they adopted two children with Downs.”

Every individual is different. Programs and activities that work for some will not work for others. Beecher emphasized the importance for parents to find the programs that will work for their children early, before finishing high school or other life transitions.

“Nobody wants their progress in life to be stopped at 22,” she said. “Twenty-two is just the beginning of life. There is a lot more life to live.”


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