DARA Hurley, like any little boy, will only get one chance at childhood. But Dara faces a more complex set of daily challenges than most six-year-olds: he has both Down Syndrome and autism.
“His level of intellectual disability is classified as severe,” explains Dara’s mum, Elaine Hurley, who has three other children, one older than Dara and two younger.
“His siblings are wonderful with him, and they slip into the role so naturally: they are born into it,” Elaine says.
“But you’re trying to give them as normal a childhood as possible at the same time. It’s constant: we’re trying not to let special needs rule our lives.”
Elaine is on the Parent’s Association at St Gabriel’s special school in Bishopstown, where 43 children from Cork city and county, often with a dual diagnosis of an intellectual disability (ID) and autism, and with mental ages of roughly 18 months to two years, are schooled.
St Gabriel’s is the only school in Cork City that’s currently enrolling children with a dual diagnosis of a severe to profound ID and autism. On top of these challenges, many of the children may also have health needs: everything from epilepsy to immunological disorders.
“We do our best, and we adapt and adjust: there are no two children here with the same set of needs, and each year we have new sets of needs to adjust to,” school principal Margaret Lordan says.
Margaret, Elaine and Parents Association Chairperson Sinéad Desmond have gathered at the school to talk about a new €200,000 crowd-funding drive launched by the parents of St Gabriel’s pupils. The school building, constructed in 1981, was designed as a mainstream school. Although many adaptations have taken place, it’s not an ideal physical environment to serve the many needs of its students.
Although the school has applied to the Department of Education and Skills for funds for an entirely new, fit-for-purpose building, they have been told it will take time. In the meantime, Dara and his schoolmates are being educated in a building with multiple problems, from leaky roofs to a lack of wheelchair ramps.
Just two weeks ago, the central heating system in the school broke and parents were asked to put extra layers on their children while the problem was being fixed.
“Everything is old at this stage,” says Margaret, who has been principal of the school for the last 14 years. “To be fair, when the school opened in 1998, the Department of Education did put in a lot of funding in in the beginning and we’ve had grants for things like furniture and IT.
“We’ve put in for a grant for a new build, which is our goal, but that’s a long, slow process.”
In a school where no two children’s needs are the same, safety, a calm environment and hygiene are essential to the work Margaret and her staff do, even before an educational curriculum can be taught. It’s frustrating to be battling issues like toilets too small for wheelchair access or changing areas in need of a new hoist, the principal says, but she is optimistic that the funding will eventually be granted.
But Dara’s childhood is now. If funding arrives when he is in his teens, he will have spent the entirety of his childhood being schooled in sub-standard facilities, which are no reflection on the excellence and dedication of the teaching staff, Elaine is keen to point out.
“We feel a sense of urgency for our children in the school,” Elaine says. “We need to do what we can and take positive steps now; I feel all we can do in the meantime is improve the facilities.”
Tired of waiting, the Parents’ Association have launched an ambitious €200,000 online crowdfunding campaign on the GoFundMe website, to ask the public to step in. They may not be able to tackle structural repairs to the building, but in the meantime, there are loads of improvements that can be made, from new matting for the children’s playground, to wheelchair access to the sensory garden and a new sensory room for the children: the current one is located in a windowless outbuilding.
The fundraising drive has the backing of the school’s staff and board of management, who are keen to stress that the funds are not meant to replace official funding, but to supplement it.
Sinéad Desmond is the chair of the Parent’s Association. She’s mum to Max, aged seven, who has a rare genetic condition called Cardio-Facio- Cutaneous (CFC) syndrome.
“Cognitively, Max is probably about 12 months old,” Sinéad says. “He needs one-on- one supervision all the time, at home or in school. He has poor muscle-tone so he tires easily, and he also has epilepsy. He has thickening of the heart muscle and a compromised immune system and severe sensory issues.
“I know it sounds crazy when you list all the issues, but he really is a very happy little boy and he loves coming to school. The staff here are amazing.”
Sinéad, like so many parents of children with special needs, feels it’s easy for the resource- stretched parents of special needs children to be side-lined in the struggle for resources for their children. She says it’s painful for her to compare the resources on offer to Max compared to those in the mainstream school of her older son, Charlie, aged 10.
Sinéad feels that political will is lacking.
“It’s voting power,” she says. “Our children are from different catchment areas, so we’re not a threat when we go lobbying. We feel forgotten at times.
“Their childhood is already much more difficult than that of a mainstream-schooled child, and they face challenges every day. Coming into school shouldn’t be one of those challenges, and it shouldn’t be for staff either.”
Taking things into their own hands to launch their crowdfunding campaign, Sinéad says, has given the parents hope. They’ve already been overwhelmed by the support offered. Over €13,000 of their fundraising goal has been reached. Iconic Cork singer Karen Underwood has signed up as an ambassador for the school, as has Munster Rugby star Ian Keatley.
“Kinsale Rugby 7s gave us the funds to make a video for our fundraising campaign, and we’re also their charity partners for the weekend of the 7s, so we’ll be doing a collecting drive then,” she says. “The response has been amazing. We’re blessed, and some donations have been exceptionally generous.
“I think if people could see the work that’s being done in these limited conditions they would be hugely impressed.”
Funds raised by Cork’s public won’t replace the long-term necessity of a new school building for St Gabriel’s, but in the meantime, children like Max and Dara can make the most of their childhoods with the help of improved facilities and equipment.
“We can only do so much to improve the situation while we wait,” Sinéad says. “But ultimately, we hope that the powers that be will grant a new school for the children, because they deserve it, and so do the staff.”
St Gabriel’s GoFundMe page: https://www.gofundme.com/st-gabriel039s- special-school- cork
Karen Underwood concert for St Gabriel’s special school is on May 11 in The White Lady, Kinsale. Tickets are available from the school.
Also watch out for St Gabriel’s charity collectors at Kinsale Rugby 7s on May 5 and 6.
Some of the issues the school:
No hot running water in some classrooms
Bathrooms are barely big enough to get a wheelchair inside;
No dedicated toilets for children with severe medical conditions;
The roof is severely damaged in most classrooms;
There are no ramps for wheelchairs;
There are no dedicated rooms for physiotherapy or occupational therapy;
The sensory garden is not accessible for children in wheelchairs
The sensory room has no specialist equipment in it and is housed in a windowless outbuilding.