by Valerie Parsons of the Syracuse Islander
Chloe Bennett, 4, has bright blue eyes, curly white-blonde hair and a wide, winning smile. She also has a seizure disorder and severe and irreversible brain damage, rendering her muscles weak.
Mother Tara cradles Chloe against her body, head nestled in the crook of her neck. Chloe's legs with feet in bright sparkly pink shoes stretch nearly to Tara's knees. Chloe's dad, Michael (known as Oby) walks beside them, carrying a humidifer back to Tara's mother, who lives next door. Chloe has been sick with RSV the last week and was better cared for at home than at the hospital.
Tara entrusts Chloe to Grammy's outstretched arms. Chloe's smile widens. Grammy Bonnie Mann takes her into an adjoining room to read a book while Tara sits down to talk about their dream of a special needs playground to be built in Syracuse at Centennial Park.
"Chloe's condition appeared at about 3 1/2 to 4 months," Tara states. "She had digestion issues and was always a bit fussy." She was told her baby was colicky but she knew that something else was wrong. One night, desperate for help, they took Chloe to the emergency room. Since that night, when doctors started to take the family's concerns seriously, they have been given many diagnoses.
After Chloe began to have seizures, one diagnosis was West Syndrome. Tara's blog explains this serious illness can cause severe mental retardation. It has a 60% higher mortality rate before the age of 10. The medication to treat it costs $20,000 per vial and it took the insurance while to approve the payment. Thankfully, the medication has controlled Chloe's seizures.
Chloe's brain sends messages but her neurological pathways were destroyed. She does not speak other than to occasionally say, "Uh huh" (which her mother says is very useful when trying to determine what she needs). Her intonation helps them determine how she feels. She is very aware and has tested well cognitively and is socially well above her age group.
"Chloe is relatively healthy, which is uncommon with her condition and that helps a great deal too," says Tara.
Chloe now attends a Head Start pre-school haf day, where she interacts with her peers. She adores playing with her cousins. Her special needs dance class and therapies have provided her with many more friends. "She's a social butterfly," Tara says with a smile.
When the family was searching for a diagnosis, Tara heard about a special needs playground in St. Louis, Missouri. "It was a miniature Disneyland: multiple play stations, sensory toys. Not just for special needs but for all abilities and ages. I read about it and knew that I also had to do that. Even if Chloe hadn't had special needs, I'd have wanted one for my city."
Tara looked up accessible playgrounds and found none nearby. The closest was over an hour away. They made the drive and found that the swings were upright and could not support Chloe, who loves to swing. Vandals had taken some of the straps for the swings and the remaining straps could not hold children securely. A ramp to access part of the play area was surrounded by wood chips, making it difficult to push a wheelchair.
"I don't want to say anything bad about the other playgrounds, but the standards need to be raised. The people who designed those playgrounds probably didn't have special needs children because they weren't very well thought out."
"Special needs children needa playground more than others but I would like to see a true societal change with this," Tara explains. "I started this as an accessible playground. The longer I work on this I don't just want to provide for the special needs community.
"I want a place where they are celebrated.... where children and adults are playing together with no separation from one another. I don't want people to say, 'look what we did for you; aren't we wonderful?'"
Tara continues, "Mother Teresa had a saying: 'If we have no peace, it is because we have forgotten that we belong to each other,' and that's what I hope this playground will remind us."
She wants people to see what special needs people can do. She becomes emotional as she speaks about how much Chloe has taught her. This playground is the beginning of a positive change. Chloe's Sunshine Playground will be inclusive rather than exclusive.
Tara's playground idea began when she went to the Syracuse City Council to ask for land donation in exchange for raising the fund for the playground. The city has supported her from the beginning. "They have shed tears and cheered our small victories," she says. "We're truly in this together."
The project likely has obtained grants for matching funds from the water conservationi fund, and they have applied for a Community Development Block grant. They have held numerous fundraisers from the 5k Turkey Trot to selling bows, pies and breakfasts at Heritage Days and other events.
The playground will be built in phases. Phase I will build the main playground structure and install the 'pour and play' surfacing, which is soft and more forgiving of falls, yet hard enough to accommodate wheelchairs and walkers.
Tara explains that the playground will have a bug and nature theme. She calls it Chloe's Sunshine Playground because, Tara says, "Chloe is my sunshine and I always htink of her as the caterpillar which becomes the butterfly." She adds that the playground will feature a music area with drums, chimes and marimbas.
Phase II will feature an extra large splash pad with interactive water play. In addition, bathroom facilities at the park will be improved and expanded.
Tara hopes that Chloe's Sunshine Playground will one day be the place where the simplest and most universal expression of joy, a child's smile, will always unite the community.
Chloe's wide smile and TAra's playground project is certainly a great start.
