Autism parents support group seeks to expand
- Roisin McManus -
Throughout April, World Autism Month, Cavan Autism Parents Support (CAPS) will be hosting a number of fundraising and awareness events around Cavan and Monaghan. Marking World Autism Day on April 2, CAPS hosted a ‘Light Up’ event in Cavan Courthouse to symbolise the diversity and possibilities within the autism spectrum.
One of the National Lottery’s ‘Good Causes’ beneficiaries, CAPS was founded as a registered charity in 2011 by the late Bernie Nelson, to provide services for her son with autism. Today, there are now 139 members of the group.
Speaking to the Celt, CAPS chairperson Sylvia Stafford says that Bernie “grew and developed a great organisation” that supports a “growing” number of children and families across Cavan and Monaghan.
“Last year, we had about a 30% increase in our membership and it looks like we’re going to have a similar growth this year,” Sylvia reveals.
As well as work on advocacy and education, CAPS provides a number of services to children and young people with autism and their families including music therapy, arts and crafts, dance workshops, a weekly Saturday club for young children and a monthly social morning for parents.
The charity also organises a number of camps for members during school holidays to alleviate the pressure on families with plans this year to extend the duration of the summer camp from four to five weeks.
National Lottery funding covered transport costs for the CAPS Summer Camps. This support meant that more families could access the camps without the financial burden of travel, allowing autistic individuals of all ages to fully engage in enriching, sensory-friendly and confidence building activities.
“It’s all about getting time for the children to have a safe space for them to play, interact and do activities with other people that maybe they couldn’t normally access,” Sylvia says of the camps.
“It also gives families an opportunity to have time, perhaps with their other children,” she adds, pointing to her own family's experience.
Sylvia has two children, a son and a daughter, 18 months apart. Her daughter, now 18, has autism.
For Sylvia's family CAPS has provided “very important respite” over the years.
“When my son was younger, those were the days that we got to take him out to do stuff that he wanted to do because, otherwise, it was a real difficulty,” she says of the days her daughter spent at CAPS camps.
As a parent of a child with autism, Sylvia is aware that autistic children are not always accepted into “regular activities”.
“Without CAPS being there, we would have had nothing for her growing up,” she says, acknowledging the “reality” of her daughter’s youth.
“Just because she’s become an adult doesn’t mean she doesn't still want to do arts and crafts and go to play centres,” Sylvia highlights of the ongoing need, which is still being met by CAPS.
The group has a number of volunteer carers, who they “couldn’t survive without”, who help them provide their services. Trina Boylan, CAPS Service Manager is the only full-time employee.
At the start of the year, parents pay a membership fee for CAPS of around €25, and parents pay a third of the cost of camps, while the remainder is subsidised by the charity.
The majority of CAPS funding is raised through grants and fundraisers, for which the charity is very grateful.
The group has also applied for HSE funding but is waiting to hear back on their February 2025 application.
Sylvia describes their limited funding as a “restriction” from thinking long-term and further expanding their services, something they would particularly like to do in Co Monaghan, where they have a few members coming from.
“You don’t have to be from Cavan, you can be from anywhere as long as you want to come and avail of our services,” she encourages.
Without a stable base and steady funding, the charity has also spent the past six to eight months “really struggling” to find available premises, and the board can’t justify spending tens of thousands on leasing a premises that may reduce the number of services they can afford to operate.
“We’re in this vicious cycle of wanting to do more but not having a premises to do it in,” Sylvia details.
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