Philadelphia area musician Raymond Coleman remembers when he and his wife Jaclyn first started worrying about their daughter Céilí.
Céilí was a year and a half, and she didn’t respond when they called her name or rolled a ball back to her. At first, they thought she might have a hearing problem. Then, Coleman says, he wondered whether Céilí might be developmentally delayed.
They consulted with Céilí’s pediatrician, who recommended testing.
“We were calling her name, and she wasn’t paying attention,” says Coleman, who hails from the town of Ardboe, County Tyrone, now living in Telford, Montgomery County. “She wasn’t turning around. She wasn’t verbal. And when we got her hearing checked, everything was fine. And then she was tiptoeing around and would flap her hands when she was excited. It was then that the doctors suggested she might be autistic.”
Doctors at Einstein Hospital confirmed the diagnosis when Céilí was 2.
Céilí is now 5, just finishing half day school for children with autism offered by the Montgomery County Intermediate Unit. Her destination next year is uncertain, but one possibility is the autism program at Oak Ridge Elementary School in nearby Harleysville. She remains nonverbal but watching her play with her dad’s cell phone or a toy, she is by all appearances a happy, rambunctious child. She is drawn, her parents joke, “to anything that beeps.”
That’s not to say life with Céilí can’t be challenging. (For example, there was one night when the family was in bed, Coleman says, when he found her playing with a toy in the bath, sitting in her pajamas, with the water running.)
It’s not easy. Céilí requires constant supervision. The fact that Coleman is a musician, playing evening gigs throughout the Delaware Valley and getting home in the wee hours, means he pulls the night shift, with Jaclyn minding the fort during the day.
As with all children, Céilí has her temperamental moments. “Things can change just like that,” Coleman says. “Sometimes she’ll just have a meltdown. She’ll be steaming. I have patience, which is good. I hold her and massage her, and that calms her down a little bit. And if not, it’ll be time out for 10 minutes in her room. After those 10 minutes, she’ll settle down.”
As she has grown, Céilí has grown more mature, Coleman says. She plays with her toys and knows how to figure things out. Céilí is particularly fond of a toy piano that plays music. She understands how to work it, blasting out the same classical tune repeatedly. She also recognizes that if she misbehaves, she’s going to her room. “She knows what I’m saying, because she gets angry when I say she’s going to be grounded,” Coleman explains.
Despite the challenges, Céilí is a lovable and clearly much-loved child. With her hair bound up with a flowery hair band and her sister Bonnie Ray, 7, at her side, she displays a ready smile for the camera. (Céilí has an older sister, Brianna, 10.) “Your heart breaks for her, but at the same time, she’s comical all the time,” says Coleman. “She’s funny, just the things that she does, just different things.”
As the nation observes National Autism Awareness Month and with the eager cooperation of the bars, pubs and clubs where he performs, Coleman is translating the family’s love into action. He has formed Team Céilí, participating in the Eagles Autism Challenge.
It all started with the New Deck Tavern in University City, Coleman says. He’s scheduled to play there April 15, and he asked whether he could raise funds that night. The pub’s owners happily agreed to a big blowout fundraiser on the 15th but then they upped the ante. Coleman remembers their response with grateful incredulity. “They said, we’re going to donate a dollar off every Guinness we sell this month for autism charities,” he explains.
But the campaign doesn’t stop there. New Deck’s owners suggested that Coleman promote his fundraiser at all the venues where he plays during April. So far, several pubs and clubs are on board, among these: Dagwood’s Pub in Torresdale (5 percent of drink and food proceeds to be donated on Tuesday nights in April), the Ancient Order of Hibernians Division 87 in Port Richmond, (tip jars and guest bartender night April 20), Ashburner Inn in Northeast Philly (big fundraiser April 24), the Fainting Goat in Glenolden ($1 off Guinnesses sold in April), and Dooney’s in Voorhees, New Jersey ($1 of every pint of Guinness to autism charities during April).
When we spoke last week, just seven days into his campaign, Coleman had already raised $4,000, and was expecting the amount to go much higher. He was, in a word, gobsmacked. “I wasn’t expecting it to go far,” he says. “I was thinking, maybe a couple hundred bucks. I thought, this is just crazy. I’m taken aback. I wasn’t expecting all this. But it’s not just the money. It’s spreading awareness. A lot of people don’t know.”
You can also help raise funds—and awareness—for the Eagles Autism Challenge by joining Coleman’s team. Click here.
