Kids @ Play

Accessible playgrounds, such as this one designed by Boundless Playgrounds, do away with the barriers of traditional playgrounds.

Louisiana Moms 'Fix It' by Building
Accessible Playground

Third-grader Wesley McHugh couldn’t wait to see the new playground at his school in Mandeville, La., near New Orleans. His excitement quickly changed to disappointment when his electric wheelchair was unable to maneuver over the bark-covered surface. During recess, he sat on the sidelines and watched his classmates play.

Wesley, who has nemaline myopathy, graciously accepted another barrier in his young life.

Wesley’s mother, Susan McHugh, was more vocal in her disappointment with the new playground, built in 2004. She spent hours commiserating with the frustrated mothers of other special-needs children in her community

Fix It, Mom

Overhearing his mother’s conversations, Wesley told her, “Mom, I know that you’re upset, but don’t worry about me. It’s OK if I don’t get to play, but you have to fix it for all the other kids who want to play.”

McHugh didn’t know how to “fix it.” She sought the advice of her friend Michelle Pecoraro. Each woman has three children, and they’ve been friends since their oldest children were in preschool. Pecoraro’s third child, Angelle, has Orbeli’s syndrome, which causes a range of disabilities.

Pecoraro remembered reading a Woman’s Day article about accessible playgrounds. The article described how Amy Jaffe Barzach’s 9-month-old son Jonathan had died from spinal muscular atrophy. Wanting to honor her son’s life, Barzach mobilized 1,200 volunteers and built a state-of-the-art playground for children of all abilities in West Hartford, Conn., in 1996.

They called it Jonathan’s Dream. (See “Child’s Play”)

Barzach is the co-founder and co-director of the National Center for Boundless Playgrounds, a nonprofit organization that assists communities with the creation of barrier-free playgrounds.

“When children of all abilities grow up playing together, they learn to accept their differences and celebrate their similarities, which ultimately leads to a world where everyone can contribute. I am so delighted that something that started out as just a dream is making such a difference in so many children’s lives,” Barzach said.

In a Boundless Playground, at least 70 percent of the play activities can be enjoyed by children with physical challenges without having to leave their support equipment (such as wheelchairs or braces) behind. Children in wheelchairs play in raised sandboxes, ramps go to the highest play decks, and swings have high support backs with armrests.

There are more than 70 Boundless Playgrounds in 20 states and Canada, with dozens more in development across the country. Barzach explained that, with each new playground, more people realize what’s possible and want to duplicate it in their own communities.

	Susan and Wesley McHugh

Going Boundless

McHugh and Pecoraro agreed they should change their focus from the playground at Wesley’s school and direct their efforts to building a new one where their children could play at any time and with anyone.

They called Boundless Playgrounds for advice on how to begin. Together, with seven more women, they formed an executive board and named their group Kids Konnection. Their mission was to create a playground where kids of all abilities could connect through play.

“I’ll always remember the night we met and decided on our name,” McHugh, president of Kids Konnection, said. “Our dream was to help children build relationships and connect through play. I never thought about the wonderful relationships that we [parents] would build as we worked together to attain this amazing goal.”

Community Effort

As the word was spread through the community, people embraced the project. Pecoraro told her next-door neighbor that she was going to build an accessible playground with her friends. His company, iBusiness.com, gave her a $5,000 donation and valuable marketing support, including the design of a Web site and creation of a Kids Konnection video.

McHugh got the support of the president of her parish (county) and, with his help, found a location for the playground. It’s in Mandeville, in St. Tammany Parish, the fastest-growing county in the state where approximately 7 percent of the children have disabilities.

Nearly an acre of land has been provided in the Tammany Trace, a 31-mile recreational corridor for pedestrians, bicyclists, equestrians, rollerbladers and joggers that’s governed by the parish. In addition, Kids Konnection was made a Tammany Trace Foundation committee, enabling it to immediately become a tax-exempt, nonprofit organization.

The next major step was to find the money.

Kids Konnection held four major fund-raising events: a kickoff party, a kids’ day, an art auction, and an evening gala that featured a silent auction, food from 50 local restaurants and entertainment. The first event generated $5,000 in donations, while the fourth made $250,000.

In a little over a year, the group raised almost its entire $400,000 goal.

With each fund-raiser, the community’s awareness of Kids Konnection increased. From schoolchildren collecting pennies to the support of the local Kiwanis, everyone wanted to help.

Dream Come True

“We’re not just building swings and slides. We’re changing the way children and adults react with one another. Accepting each other for who they are, not what they can do,” said McHugh, who has worked for more than two years to “fix it” for the children.

In summer 2005, the team began working with a civil engineer to develop a schematic and draw up plans for site work. But then came Hurricane Katrina. The storm’s massive destruction to St. Tammany Parish stalled the project for several months, but this spring, the group got back on track.

The St. Tammany Kids Konnection Boundless Playground is scheduled to open by the end of the year.

“I’m pretty happy that my Mom is doing this and I am happy that all the other kids who have special needs will be able to play, too. I’ve never been able to play on a playground before with my friends or my brothers, and now I can! I am looking forward to playing in the water and the sand! And, I think the ramps that take me up high will be fun,” said Wesley.

The new playground will allow kids with disabilities to play with their friends and siblings, and will enable parents with dis-abilities to keep a closer eye on their children at play. Accessible paths wind through the area. There will be swings for tots, a tire swing and one designed for wheelchair users.

Kids can crawl through tunnels, climb a wall or get the tunnel experience in a vine-covered arbor. A maze and a sensory garden will feature sound-play instruments, chalk painting and places to stop to smell the flowers.

The sand-play area will have tables at varying heights so children of all abilities can play side by side. Imaginations will soar as kids act out their favorite stories on the performance stage.

Born of Passion

“As parents of a special-needs child, we can’t sit back and expect someone to do what we need done for our children,” McHugh has learned. “We have to be our children’s advocate. You can’t just assume that your school, or your city or state government is going to do what you need done.

“It goes beyond that — it has to come from our passion for doing what is best for our children.

“Don’t sit back and wait for someone else to do it.”

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Playground Resources

Accessible playground equipment directory
www.playgrounddirectory.com/accessible.htm

Accidental Courage, Boundless Dreams
by Amy Jaffe Barzach and Sandy Tovray Greenberg
Aurora Publishing
www.tovray.com/books/orders.html

Boundless Playgrounds
www.boundlessplaygrounds.org

“Guidelines for Safe, Accessible Playgrounds”
www.familyeducation.com

Guidelines of U.S. Access Board
www.access-board.gov/play

Kids Konnection
www.kidz.la

National Center on Accessibility
www.indiana.edu/~nca

W.K. Kellogg Foundation
Able to Play (Michigan only)
www.wkkf.org
Click “Programming” and look under “Youth & Education.”

How to Champion an Accessible Playground

Planning an accessible playground and exploring key questions about its use can make all the difference in whether the end product is successful.

“Some of the most heartbreaking calls that we get are from people who have just built a playground that was supposed to be ‘accessible,’” Amy Barzach, co-director of the National Center for Boundless Playgrounds, said. “When the children with disabilities go to play there, it is a ramp to nowhere. Or, worse, a ramp to about 25 percent of the fun and the rest is teasingly out-of-reach.

“Those are the calls I hate the most, because it is usually a passionate community group that had good intentions. It’s not until it’s built that they realize there is a whole lot of technical expertise that goes into knowing what components are needed and how to configure it.”

Some of the key steps are:

Research

Visit and evaluate the existing playgrounds in your community. Take the virtual playground tour on the Boundless Playgrounds’ Web site (see “Playground Resources”). If possible, visit an accessible playground in person.

Contact Boundless Playgrounds or local playground organizations to find out more about available resources and services.

Identify Potential Supporters

Supporters for accessible playground projects have included: parents, grandparents, educators, parks and recreation professionals, families of children with disabilities, elected officials, medical professionals, civic groups, foundations, organizations that serve people with disabilities, business leaders, YMCAs and YWCAs, students (elementary school through college), the media and local celebrities.

Create a Playground Committee

You’ll need a core team for planning, fund raising, promotion, volunteer recruitment and more. Once the key individuals are identified, establish their roles and responsibilities.

Next, create a timeline for your project.

Then, develop plans for both fund raising and communications. Before you begin raising money, it will be helpful to establish 501(c)(3) status with the Internal Revenue Service or partner with a nonprofit organization that has tax-exempt status.

Explore Site Options

When looking for potential sites, contact parks and recreation departments, school boards, parent/teacher organizations, early childhood education centers, religious organizations, and companies/organizations with a strong commitment to serving children and families.

Survey the Site

Once you’ve identified a site, you’ll need to hire a local design professional, such as a landscape architect, to prepare an official site survey. Before committing to a site you should answer such questions as: Is the site and size appropriate for a playground? Will the site owner agree to accept the completed playground and maintain it for the life of the equipment (usually 10-20 years)? Is the site owner required to participate in a bid process?

See sources listed in “Playground Resources,” for more details on what a playground should feature.

Estimate a Budget

Budgets for accessible playgrounds vary greatly. Typically, a full Boundless Playgrounds project (for 2-to-12-year-olds) can be built for a minimum of $150,000, although budgets closer to $250,000 are more common.

For a school-age playground (for 5-to-12-year-olds), the minimum budget averages $100,000. A preschool or early-intervention center playground (for 2-to-5-year-olds) can be built for a minimum of $65,000. Some playgrounds have budgets in excess of $800,000 when they cover larger sites or support areas with high population density.

Partner With the Pros

Your committee will need to work with a team of playground industry experts, including design professionals and playground equipment representatives. Some projects hire a construction manager as well. Organizations such as Boundless Playgrounds can provide layouts, technical assistance and project coaching services.

Involve the Community

With the help of your supporters, it’s time to build awareness of your project in the community at large and implement your communications and fund-raising plans.

Kids @ Play

Kids of Different Abilities Can Play Together

by Donna Albrecht

The saying “play is the work of childhood” has been credited to everyone from Swiss developmental psychologist Jean Piaget to TV’s Mr. Rogers. The phrase is so well known because it’s absolutely true — even for children who have disabilities caused by neuromuscular diseases.

However, for our children, playing may be more difficult, especially with peers who don’t have disabilities. It’s tempting to protect our children from activities and social relationships, but that can keep them from developing into the wonderful people they were born to be.

Mackenzie Matarozzo (center), who has limb-girdle muscular dystrophy, hangs out with sister Dakotah and friend Luke Sorenson.

Their Play — Your Problem

Whether your child’s life expectancy is long or short, they need to learn how to be social and play with their peers, both able-bodied and disabled.

One reason that play is the “work” of childhood is because it helps children develop social skills. During play, they learn how to stick up for themselves and how much they can push others to do their will.

This is especially important for children who need to ask able-bodied peers for help with everyday tasks. When the novelty of helping wears off, it’s best if your child has made the helper a friend, not just an assistant.

Recognizing Differences

As shown in the developmental play chart, until about age 4, many kids aren’t very interested in interacting with others (except for the occasional filched toy).

Beginning about age 4, they’re aware of each other as individuals.

Mackenzie Matarozzo, 5, of Collbran, Colo., says other kids just accept her as she is at her preschool.

Her mom, Melonie, adds, “Kids at school don’t seem to separate her out. They don’t seem to realize there is anything different.”

To adults, the differences are obvious. Mackenzie walks slowly because of her limb-girdle muscular dystrophy, and her teacher holds her hand when they’re walking in the hall to prevent her from falling.

Preschool age kids may not perceive that different physical abilities are outside the norm, says psychologist Bob Murray, co-author of Raising an Optimistic Child (McGraw-Hill, 2005, with Alicia Fortinberry). Murray adds, “After 4 or 5, they tend to get their parents’ view of differences.”

Social Play

The onset of social play (ages 4-7) brings a new set of challenges. Much of the time, your child will be playing with children without disabilities from school or the neighborhood, or joining in with a sibling and the sib’s friends.

Children in this age range tend to be very physically active. For children with neuromuscular diseases, some less physical play activities include:

• Coloring and painting (tip: get long rolls of table-cover paper to keep them busy for hours)
• Building with blocks, like Legos
• Playing simple musical instruments, like drums, cymbals and kazoos
• Enjoying a sandbox situated for easy access
• In outdoor competitions, level the playing field by doing things like having another child run backward when racing against your child.

Reality Play

From about age 8, children’s play lets them realistically explore their place in the world.

While there’s still a lot of physical play using bicycles, scooters, running, etc., there also are many less active ways for children to play together:

• Computer games (and related electronic game devices)
• Board games, like Scrabble, which also helps with spelling skills
• Playing with dolls or action figures at the kitchen table
• Crafts, such as making jewelry, clay creations and stained glass
• Looking for creepy bugs in the yard or park with a magnifying glass and a plastic jar
• “Cooking,” such as making their own trail mix from bowls of granola, raisins, nuts and small candies

Medical Transitions and Play

As the physical abilities of children with progressive neuromuscular conditions decline, they may become less able to keep up with their peers physically. They’ll also require medical equipment and adjustments to their styles of play.

“Equipment means one thing to kids and another to parents,” says social worker Holly Bleasdale. In her work with the MDA clinic at the University of California at Davis Medical Center, she frequently counsels families dealing with Duchenne muscular dystrophy, especially as the children fall more and have more trouble keeping up.

“That first manual wheelchair is a hard time for parents. It means their child is getting worse,” she says.

”For the kids, it’s freedom. Other kids want to push them, and life is fun for them again.”

When my daughter, Katie, who had spinal muscular atrophy, needed a tracheostomy in elementary school, we talked about how to explain it to her classmates. We decided to say it was a lot like having pierced ears, but this was in her throat to help her breathe.

The classmates found it really cool because they could hold their hands a few inches from her trach and feel the air move!

Bleasdale admits that some children are self-conscious about new equipment and may be reluctant to play with their friends. However, their increased mobility and function soon outweigh the inconveniences and self-consciousness, she says.

For children who are anxious about the new wheelchair, braces or trach, Bleasdale suggests that parents help the child practice answering the kinds of questions other kids will ask. They can also have the child’s friends visit one at a time to ease the social transition and get the word around school about the new cool stuff.

Playing for Life

Play gives your child the opportunity to grow psychologically and experiment with life choices.

Expose him or her to as many ways of playing as you can. The child who loves to play T-ball may become the sportswriter for the high school newspaper. The child who dresses dolls may be the costume designer for a local theater.

Play is a child’s work. Being able to play comfortably with friends both with and without disabilities helps a child learn to be comfortable in the larger world.

Age-Wise Play Stages

As children mature, they pass through several stages of play. Children with neuromuscular diseases also experience those stages, but not always at the same pace as peers without disabilities.

Psychologist Bob Murray says children with disabilities “may not benefit as naturally” from play as their able-bodied friends, because they can’t participate as easily. That means parents must ensure their children have many opportunities to play, and that the play is age-appropriate.

Murray describes the stages of play as:

Infant-2 years:

Children play primarily with their principal caregivers.

2-2½ years:

Solo play begins. Toddlers play separately from their caregivers and don’t notice other children in the room.

2½-4:

Now they’re aware of other children, and they experience parallel play, sometimes called mirroring play. At times a child will take the other child’s toy in order to be able to accomplish the parallel play. That can be disruptive, and presents a good time to begin learning about social relationships.

4 - 7:

Play becomes more cooperative and can include games created by the children. This social play stage reaches its peak about age 7. This is often called the age of “magical thinking” because kids haven’t yet related strongly with the real world.

8-10:

Children now begin more reality-based play activities. Depending on cultural and family influences, children often create play based on gender issues or preparation for adult roles.