Nemours child life specialist helps grieving children build self-confidence

via delawareonline.com

Tara Monroe’s car looks like a mobile art project. Inside you’ll find scraps of paper, stickers, glitter and paint, along with scissors, glue and old magazines – kid-friendly supplies she brings to the homes of the children she visits. But there’s more than just arts and crafts.

Monroe, a child life specialist from Nemours/Alfred I. duPont Hospital for Children, uses the power of play to help grieving kids talk about their feelings after losing a brother or sister. She gets down to their level – sometimes, literally – to get a better understanding of where kids are in the grief journey.

“They’re not sick. They don’t need to be at a hospital, so why see them there?” said Monroe, who works in the palliative care program at Nemours. “Sometimes they want to show me everything that’s in their room. They show me pictures. You get this different sense of who they are.”

Kids with Confidence

Monroe’s work is supported by Kids with Confidence, an organization that aims to help children build self-confidence no matter their physical or emotional challenges.

For nearly 10 years, the local, all-volunteer organization has focused on helping kids with physical differences – such as protruding ears, skin growths, scars and other cosmetic deformities – undergo corrective procedures to help them feel better and more comfortable in their own skin.

These operations often are not covered by health insurance or are too costly for families to pay for on their own, said Xavi DeCaire, who founded Kids with Confidence after being involved with Operation Smile, an international organization that helps children with facial deformities.

Over the years, Kids with Confidence has helped fund about 60 procedures, including cochlear implants, otoplasty for ear deformities and gastric banding for those struggling with obesity.

“This is something people don’t talk about,” DeCaire said. “If you can prevent a child from being made fun of because of how they look, that can make a big difference.”

While Kids with Confidence previously focused on issues related to appearance, it’s taking a similar approach in helping kids with the emotional scars related to the death of a sibling. The organization is committing $68,000 over two years to fund Monroe’s part-time position.

“When they described Tara’s position and what she gives to these kids, it took probably three minutes to decide this was something we want to do,” said Dick Christopher, who serves on the Kids with Confidence advisory board and also the Board of Directors of the Nemours Foundation.

‘Emotional scars’ not always visible

Helping grieving siblings is part of the whole family approach to care, seen as instrumental in the pediatric palliative care experience, said Dr. Elissa Miller, director of the Thomas P. Ferry palliative care program at Nemours.

Losing a loved one isn’t easy for anyone, and it can be even harder for siblings who might have been accustomed to being overshadowed by an ill brother or sister. In addition to grieving their deceased sibling, they yearn for a family dynamic that no longer exists.

“These emotional scars aren’t always as visible,” Miller said.

Working with kids in their own home rather than the hospital gives them a chance to more fully express themselves, said Monroe, who is working with five families dealing with sibling loss or an impending death. Children who seemed shy in the hospital while visiting their sibling suddenly blossom with personality.

Through memory books, paintings and other activities, Monroe can gingerly address some of the challenges children might be experiencing.

“The big piece is explaining that I’m not walking in and then talking about emotional things,” she said. “It’s more like, ‘Hi, I’m Tara. Let’s play today.’ ”

Monroe’s work has made a difference for the Dunne family, whose daughter Molly died in 2012 after battling pulmonary hypertension, a lung disorder that eventually causes heart failure. In addition to her parents, Molly left behind a twin sister, Kate, and older brother, Ryan.

“The big thing with Ryan and Kate is that Molly was kind of the boss around here. So they are trying to figure out who is the new boss,” said Kristen Dunne, Molly’s mother. “It’s really changed the dynamic between the two of them. They’ve become close since losing Molly.”

Part of Monroe’s visits include remembrances about Molly, but that’s not the whole focus, Dunne said. The goal is to encourage them to move forward.

Slowly, it’s making a difference, especially for Kate, who has the added struggle of moving forward without the twin sister who once shared everything with her.

“Kate talks about how losing Molly was like losing half of herself, how she doesn’t want to grow up and do things without Molly,” Dunne said. “You want to respect and remember that, but I want Kate to know she can grow up . She doesn’t have to live in Molly’s shadow all the time.”

Contact Kelly Bothum at (302) 324-2962 or kbothum@delaware online.com.

For more info

Kids with Confidence helps children living in Delaware, Pennsylvania, New Jersey and Maryland. It assists children without health insurance or those whose coverage doesn’t include medical procedures.

For more information, visit www.kidswithconfidence.org. To make a donation, contact Delaware Community Foundation at (302) 571-8004 or visit delcf.org.

source: https://www.delawareonline.com/story/news/health/2013/12/24/nemours-child-life-specialist-helps-grieving-children-build-self-confidence-/4182343/

The Ripple That’s About To Open A Playground

Apr 25, 2017 04:21PM ● By Steven Hoffman

via newarklifemagazine.com

There is a sizable plot of land, located off Paper Mill Road in Newark, that patiently waits to become an inclusive, 8,400-square-foot playground, where able-bodied children will be able to play side by side with children with disabilities, and where attention will be given not to differences, but to the quiet truth that everyone who will go there is all one.

Preston’s Playground, launched last year through a collaboration between Fusion Fitness, Preston’s March for Energy, the City of Newark and hundreds of contributors, is about to fill up that square footage with a beautifully designed labyrinth of slides, swings and other equipment that every child will be able to play on. To date, nearly $500,000 has been raised toward the $600,000 price tag, and the playground – which was designed by Tennessee-based PlayCore — is expected to break ground this year.

That in itself is enough of a story, and it would not be a violation of any rules of essential journalism to place a definitive period at the end of the second paragraph and move on, and yet, its narrative is not found in design but in passions. It is found in unraveling the complicated means by which people come together with no other agenda than to even up the playing field of humanity. This is the story of how a guy with a gym came to know a mother and her son, and how a playground came to be.

This is a story about the power of inclusion.

Preston Buenaga is a junior at Concord High School in Wilmington. He approaches his life with a ready smile and a sharp sense of humor. He lives with a mitochondrial disorder, which effects his physical, developmental, and cognitive abilities and his muscle tone. He is confined to a wheelchair. Preston is also a long-distance competitor; through the use of an adaptive running chair he sits in, he has been pushed along by his mother, Deb, at two marathons and several 5K and 10Ks. Preston and Deb have run in snow, in sleet, in hailstorms and in sandstorms, in Delaware, Virginia, Connecticut and other states.

When Preston Buenaga is seated in that bike with his mother behind him, he feels immeasurably in the world, front and center with the wind in his face and swept up in competition. It is a temporary diversion, however; throughout his life, he has sat in his wheelchair at playgrounds with his mother near him, confined to the outer reaches, looking in. Deb would not have it; she arranged games with the other kids that would include her son. Get Preston in this game, she would say. Let Preston play with you. They did.

“The other parents sit and watch their kids, and usually, I’m the only parent up there playing with them,” Deb said. “A lot of parents used to tell their kids not to play with Preston, but the kids were so interested in him and what he was able to do.

“It’s not the kids who are afraid. Its the adults. Kids don’t care if you have five eyes or two eyes. They just want to be able to play, on the same levels.”

When Nic DeCaire began Fusion Fitness in Newark, he did so with the understanding that his business would represent more than just a place to work out. He envisioned a concept that would immerse Fusion into the fabric of the Newark community, with out-of-the-box plans for raising money for organizations and causes. He formed the Main Street Mile, which has to date raised $150,000 for the Newark police Department’s K-9 unit.

Several years later, DeCaire received an email from a father asking if his son, Andrew, could participate in the Main Street Mile. Andrew, the father wrote, lived with a severe form of spina bifida. As a result, the father wrote, Andrew participated in races through the use of a hand-cranked bicycle, but several race directors barred him from competing. He was a liability, they told him.

Of course , DeCaire said. This is an inclusive race. Anyone could participate.

“Andrew was all smiles, ear to ear, and I watched people react to him being a part of the race,” DeCaire said. “I watched him cross the finish line, and it was a great moment. I turned to someone next to me and asked, ‘Where did this bike from and how can we buy one for someone else?’”

The bike was purchased for Andrew through a foundation called Preston’s March for Energy, run by Deb Buenaga. It raises money to get specialized bikes into the hands of families who have children with physical limitations. Each bike costs between $1,800 and $2,400.

It was time for DeCaire and his staff and members to help raise money to buy more bikes. Fusion Fitness organized Fusion for a Cause, a fitness challenge, and dedicated all proceeds from the event to Preston’s March for Energy. After four weeks, Fusion for a Cause raised $7,200, and purchased four more bikes. Over the course of that year, Fusion for a Cause continued to raise funding that purchased 15 more bikes.

In July 2015, Fusion kicked off the Fusion Inclusion Means Everyone 5K, the proceeds of which went to raise money to help pay for educating children with disabilities how to better participate in physical education classes in schools. More than 250 competitors participated. The excitement from the race led to a second Inclusion Race in October 2015.

“I was having coffee with Deb, just thinking about where we should dedicate the proceeds of the October race to, when I turned to her and said, ‘Maybe we should build an adaptive playground,’” DeCaire said. “I was joking, but I was also serious at the same time. Delaware does not have a good adaptive playground, that provide easy accessibility for someone with a handicap. We wanted to build something that Delaware had not seen yet.”

DeCaire pitched the concept to the City of Newark, and immediately, it signed on. Joe Spadafino, the head of Park & Recreation, helped DeCaire find a location, secure the property, find grants and establish permits for building. Newark Mayor Polly Sierer single-handedly raised more than $10,00 for the playground. The Newark Charter School raised $7,000, and a local University of Delaware sorority raised another $6,000.

The playground will be 6,000 square feet, but will include 8,400 square feet of rubberized surface material and three accessible entrances for kids with wheelchairs, braces or other mobility issues. There will be safe, adaptive equipment for all abilities. A bright sun shade will cover the park to protect children from the sun and make for a cooler environment in the summer.

For DeCaire, giving back is in his family’s DNA. His father, Xavier, has been involved with the Delaware-based Operation Smile Foundation, which raises funds to pay for surgeries for children in Bolivia and Ecuador. This led to the DeCaires forming of a second fundraising effort – called Kids With Confidence – which raises funding to help pay for surgeries for local children whose families can’t afford them.

That DNA has been passed to a new generation of DeCaires. His 7-year-old daughter, Josephine, wants to sell cookies to raise money for the playground. Recently, she reached out her hand to her father. In it was 11 cents. She wanted her father to donate the money to Preston’s Playground.

“There are two type of people who can help out – those who can do financially and then people who can help bring time and resources and people together,” DeCaire said. “I do have time and I do have resources. Some people have the gift of being able to pull people together. For some reason, I have that gift, so why not use it?”

DeCaire calls the formation of what will become Preston’s Playground “the Ripple Effect.”

“You toss the stone and you watch the ripple keep going. The ripple effect for the playground began with the Main Street Mile, where we met Andrew. Andrew led to Deb. Deb led to the bikes. The bikes led to a race. The race led to the playground.”

There’s another new ripple in the water. Fusion Inclusion, a nonprofit organization begun by DeCaire and Fusion Fitness trainer Steve Sinko, brings adaptive running chairs to races throughout the Delaware community. DeCaire has spoken with Cole Galloway of the University of Delaware’s Star Campus’ Go-Baby-Go Program, which helps provide individuals with disabilities the technology that allows them to better function. Galloway has expressed interest in using the playground for testing, fitness and rehabilitation.

“Nic DeCaire and Deb Buenaga did not build this playground,” DeCaire said. “This will be a community-built playground. I want to be able to able to walk to that playground with my daughters, Josephine and Grace, and play there and have no one know that I was involved in this. When we bring everyone together, they will take ownership of that playground. I may be serving as the captain of the ship, but it’s the crew who is making that ship work.”

When DeCaire is asked to imagine a finished Preston’s Playground, he sees an 8,400-square-foot spot in Newark that is one of pure inclusion, where no one looks at those in a wheelchair as any different than they are. He sees the playground as a place where children learn acceptance.

“In my mind, that’s what Preston’s Playground will mean,” he said.

For more information about Preston’s Playground, visit www.prestonsplayground.org. To learn more about Preston’s March for Energy, visit www.prestonsmarch.org.

source: http://www.newarklifemagazine.com/2017/04/25/140588/the-ripple-thats-about-to-open-a-playground

The Gift of Mobility

Kids with Confidence enables in-home research for children with mobility issues

via udel.edu

9:08 a.m., Dec. 18, 2015–A donation from Kids with Confidence will give a local child the gift of mobility in 2016.

With the bright and energetic Pediatric Mobility Laboratory as a backdrop, the organization’s board members presented a literal “big check” to the University of Delaware’s Go Baby Go project, which uses technology, rehabilitation, engineering and even fashion to provide young people with real-world mobility.

With the mission of providing children with disabilities greater self-assurance, Kids with Confidence recognized an instant connection to the UD program led by Cole Galloway, professor of physical therapy in the College of Health Sciences.

“Our organization is totally focused on raising money to help kids,” explained founder and board member Xaiver DeCaire. “We looked at what Cole is doing and said, ‘This fits perfectly within our goals.’”

The funds go directly toward improving the life of a local child. Galloway will station a 10- by 10-foot pediatric mobility harness system, like the one in the UD Science, Technology and Advanced Research (STAR) Campus lab, into a local home.

Body weight support harness systems are common in clinics, but Galloway will infuse it into real-word environments. Flanked by GoPro cameras to capture the child’s development, the in-home harnesses will allow the baby to “co-create” a new world at home, providing a better understanding of how technology can improve the lives of those with mobility issues.

As Galloway explains, the family-researcher relationship in this project is a twist on the typical academic research study.

“For many studies, researchers and participants need to be detached in their relationship,” says Galloway. “In ours, we need to get to know the families in their real world environment. That’s how ideas and hypotheses for improvements are borne.”

So now that Kids with Confidence has made this in-home research possible, all that Go Baby Go needs is a family. The criteria include:

  • Baby under nine months of age with Down syndrome;
  • Family with adequate time to supervise daily play in the harness within their home; and
  • Family willing to host researchers in their home.

Interested families can contact Galloway at jacgallo@udel.edu.

This research will ultimately provide information to improve the lives of children with many kinds of mobility and learning issues, but those with Down syndrome are the focus of this initial Go Baby Go research.

“We envision a day very soon when a child with Down syndrome will begin to walk within the first year of life,” Galloway says.

Future work will feature similar harness systems in multiple homes, as well as community spaces like schools and playgrounds. This harness system is the first of many across the country. With the University’s STAR Campus as the research hub, Go Baby Go chapters from Florida to Oregon will recruit families to participate.

The benefit to babies and children is clear, but the application of harness research doesn’t stop when the diapers come off.

Galloway has grand plans of harness-based communities of homes, restaurants, fitness clubs and work places of all kinds similar to the STAR Campus’ Go Baby Go Café.

“Think of the number of friends and family who go into nursing homes every day simply because they aren’t stable walking on their own,” says Galloway. “Now imagine if those folks had a harness system, even temporarily, in their own home. Not only could they could rehabilitate their balance and walking, but they would retain their independence, which is music to the ears of patients and caregivers everywhere.”

Article by Dante LaPenta

Photos by Evan Krape

Source:

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