In spite of all of its joys, parenting can be full of frustrations. Every child can be fussy, uncooperative or bring an idyllic family event to a halt at just the wrong moment. The smiles and laughs are supposed to make up for those times.
WISC-TV morning anchor Charlotte Deleste said the challenges for her 6-year-old son, Gio, extend beyond that.
“He can’t communicate,” she said. “He's starting to smile a little bit more. He lost that ability to smile, but he's gaining that back. And to see it again --- wow -- it just takes your breath away,” she said.
Early in his life, Gio was diagnosed with epilepsy. Next, Deleste and her husband Ron were told their son had Lennox-Gastaut Syndrome and a form of autism. The conditions can cause him to experience as many as 80 seizures a day, requiring that he wear a helmet because of frequent falls.
“When he's sleeping we have a video camera in his room and a baby monitor,” Deleste said. “We always have our eyes and ears on him, that's just how it always is going to be. That's our life.”
For special needs parents like Deleste and Giordan, there is rarely a break. Both juggle careers, their marriage and another child. A good night’s sleep is a luxury the couple rarely enjoys.
Three years ago, Deleste said she found herself badly in need of a recharge. She sought respite care, hoping for a few hours of solace for herself while leaving Gio in the hands of a capable caregiver. She was turned down.
“I was told he wasn't disabled enough although he was having over 30 seizures a day,” she said. “The appeal process was just ridiculous and I was tired of going around in circles and getting no answers, and I just got frustrated, so frustrated, and I was like, 'Something's got to change.'”
The frustration became her fuel. Now, three years later, Gio’s Garden is preparing to open in June.
A beautiful mural in a sun-soaked room welcomes guests to the Victorian home on Parmenter Street in Middleton. As a licensed, non-profit care, center it will give parents of special needs children a little more room to breathe.
“You can't just call the neighbor kid up and have them come over and watch him, because they would have no clue what to do if he started having a seizure or if he started vomiting because he gagged himself,” said Jennifer Schmidt, whose son Rylan was born with fluid on his brain and the bones of his skull already fused together.
A question about a thought of just one hour to herself prompted an unexpected answer.
"Oh, that would be a lot! An hour would probably feel like five or six hours for somebody, because even just an hour of a nap, a rest, reading a book, the things people do at night, in their leisure, when they come home from work doesn't happen in our house,” she said.
Gio’s Garden director Val Croissant joined the team after 11 years in respite care with Easter Seals of Wisconsin. At Gio’s, qualifying families can receive up to 16 hours of respite care each month, though they’re encouraged to divide that out to four hours each week.
“So, they use it not as a daycare, but really, I need a break,” said Croissant.
By providing low-cost respite care at the hands of an experienced, trained staff, moms and dads who would otherwise be at the end of their rope now have a place to turn.
“Some families have to choose between, do I get a wheelchair for my child or do I have respite care? We're able to kind of fill that gap so they still use their county funding for the wheelchair,” said Croissant.
Given his diagnosis, doctors don’t expect Gio to live past 20 years old. To Deleste, a journalist by trade, it feels like a deadline. A ticking clock she can’t reverse. It won’t stop her from trying.
“You'll do everything, you'll turn every single stone, knock on every single door and it's tough it is very tough, but you just do it.”