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VOL. 37 | NO. 5 | Friday, February 01, 2013

Special camp experiences fit special needs

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Camp Hope participant and former Vanderbilt burn patient Kasie Atkins with Chattanooga fireman Vernon Horn and Vanderbilt burn nurse Amy Smith, R.N.

-- Courtesy Meg Logan/Vanderbilt

As a nurse who worked in Vanderbilt Hospital’s burn unit for 10 years, Rebekah Lemley helped families deal with life-changing tragedy.

But she says it is her time running Camp Hope, a camp for children with burn injuries, that has actually been of greater value in helping young victims get on with their lives.

“Most of the kids we service are in a lower socio-economic class, and so for most of them, this is the only big event they get to do all summer,” she says of the camp, which began after the Vanderbilt Burn Center was added in 1983.

When she took over as a director five years ago, the camp hosted 13 children. This summer it is on track to have 40 children who have received their injury in the past five years.

“We have seen our numbers increase because, unfortunately, children are still receiving burn injuries throughout the year,” Lemley says. “We target children who we have provided service to at the hospital, and we get a lot of kids through our inpatient unit and our outpatient unit clinics that are just very minor burns.”

A child’s first word

Camp Hope in Columbia is one of many specialized programs in Middle Tennessee for children who have special needs or illnesses that could prevent them from attending a traditional camp.

Camp Horizon is celebrating its 30th anniversary this year, having served more than 2,500 children with cancer during that time.

“They get to talk to other kids who are going through what they are going through,” says Katie Petersen with Camp Horizon, which is located in Kingston Springs and affiliated with the American Cancer Society. “It’s great because they see each other at the hospital, but they are in and out of doctor’s appointments and don’t really get to talk there.”

At Saddle Up! in Franklin, children with a range of more than 60 disabilities can benefit from horseback riding lessons over a six-week program.

“For children with physical challenges, there is nothing that replicates the motion of walking better than a horse,” says Cheryl Scutt, executive director. “It is three-dimensional, and you can’t go to physical therapy or any kind of medical place and get a piece of equipment that will do that.

“My first exposure to the whole therapeutic riding field was when I saw a girl who had spina bifida be lifted up out of her wheelchair and put on a horse. Your whole world changes, because instead of being in a wheelchair looking up at the world, you are on top of a magnificent animal and you are in charge.”

Saddle Up! serves more children with autism than any other disability. Other campers might have cerebral palsy or attention-deficit disorder.

“We have had children with vision loss, hearing loss and developmental delay,” Scutt says. “Just about anything you can imagine that is a documented disability. The benefits are multiple. First of all, there is this whole horse and human connection that does amazing things.

“We have had – literally – kids say their first word to their horse.”

Building confidence, compassion

As with any camp, specialized camps seek to help children build independence and confidence, and another goal is to simply help the child forget his illness or disability for awhile.

Camp Horizon doesn’t offer group sessions for the children to talk about their illness, but that doesn’t stop them from talking on their own and helping one other deal with issues they have experienced outside of camp.

“You will hear them talking about it,” Petersen says. “It is really cool to see a kid come in wearing a hat or a wig, but maybe by the end of the week, they aren’t wearing it anymore because they feel so comfortable out there because everybody else is bald, too. It is so important for them to take a break for a week and enjoy being a kid.”

Lemley agrees: “We started having formal counseling sessions, but the kids do that themselves. They are really fantastic if there is a new person, asking them how they got burned. They have their own dialogue that doesn’t need for me to mediate. I can’t tell these kids what will prepare them in their community and at school that they can’t get from their peers.”

It also helps them grow a network of trusted friends in the area. Plus, counselors are many times camp alumni or other survivors from the community who can offer another perspective. But mainly what kids experience at these camps is what they can find anywhere else – creek stomping, arts and crafts and nature hikes.

Cost and access to care

Camp Hope and Camp Horizon are free to families, thanks to grants and private donors, while Saddle Up’s sessions are $25 – a fraction of what it actually costs. The hardest part is connecting parents with the right camps, especially if they have recently moved to the area and the child received treatment elsewhere.

More and more camps not devoted to a specific concern are accommodating a range of children, but some parents decide to keep a child’s special needs to themselves which can leave a camp stumped as to how to handle a situation in the proper way.

“Special needs are hard to talk about because there is such a spectrum,” says Wanda DeWaard with the American Camp Association. “A special need could be anything from ADHD to a child in a wheelchair who needs assistance for everything he does. There are camps set up for all of those things.

“I wouldn’t hide the special need. If you make the camp director aware and the counselors aware, they are more than eager to help your child be successful. If I know a child has ADHD and is off his meds, I will have a whole different approach, so make them aware so they can make a plan with you. Not every camp can take every child, but there is a camp out there that is right for your child.”

Camp Widjiwagan works with Easter Seals in Nashville to provide a special experience for all kinds of children. The relationship began in 2008 after Easter Seals closed its camp, which had operated for more than 50 years on Old Hickory Lake.

“That is an emotional thing to close a camp,” says Mark Weller, executive director with Camp Widjiwagan. “So many people grew up at that camp and have fond memories and ever since then Easter Seals has been coming out here. So any child with special needs will register through Easter Seals, and they will provide the appropriate staff for that child.”

Widjiwagan also runs camps for children with diabetes, acute arthritis, asthma and more.

Worried parents, happy kids

If safety is a concern for parents dropping their kids off at camp for the first time, it can be doubly so for parents of children with cancer or who have been in an accident.

“The parent is usually the one who has the most apprehension, not so much the child,” Lemley says. “Especially a child who has any type of medical disability, not necessarily only a burn.

“I volunteer with about three different camp organizations throughout my summer and any child who comes in with diabetes or cystic fibrosis and needs breathing treatments, the parents are worried about how their kids will have the best time without being noticed for being gone for a medical treatment.”

The experience of forgetting their troubles is the best reason, Petersen says, to try a specialty camp, even if you are scared.

“They are in an out of the hospital so much, and it is such a world they probably aren’t comfortable in, but they get comfortable in,” she says.

“I hate that they have to do that. But they get trips to the doctor, and all day long talking about their cancer, so it is important that they get to come out and just be a kid, to go and catch crawdads and not have to think about what time they have to go for their appointment.”

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