Noeleen Smith, new chair of CAPS CLG.

New chair for CAPS group

A new chairperson has been appointed to the Cavan Autism Parents Support CLG, taking over the role following the passing of the organisation’s late founder, Bernie Nelson.

Noeleen Smith says anyone who knew Ms Nelson, a native of Crosserlough, will remember her as a “powerhouse” who drove CAPS forward with “passion and drive”. The group grew from having 10 families starting out in 2011 to more than 70 now.

Noeleen, whose 10-year-old daughter Aoibhinn has autism, was appointed chair back in February. While the group is “still finding our feet” in the wake of Ms Nelson’s sad and untimely death last November, everyone within the charity is as “determined as ever to keep things going for the kids that need us in the community”.

For many families of a child or children with autism, CAPS represents their “only real support”. Noeleen is speaking from the heart and from personal experience.

She says waiting lists for therapies through the HSE are at crisis point, with some wait times as much as six years or more.

“After Aoibhinn was diagnosed I didn’t know where to turn to. I didn’t know what supports were there. I didn’t know who to speak to. It was Bernie who advised. She told me to go to one of these CAPS meetings. Just have the chat. It was one of the best moves I ever made.”

Until then Noeleen felt “lonely” in her concern for her daughter, her future, and all the other uncertainties that accompany a life-altering diagnosis for a child.

“You can see, maybe for the first time, absolutely there are other people in the same position as you.”

To be in a position now, having benefited from the support, to “give something back” Noeleen says is an “honour”.

“I know only too well that feeling of loneliness, of not knowing where to turn to, that feeling your kids, your family, is somehow different to other people’s. Just feeling lost in all of that. So it does feel like there’s a lovely sense of coming full circle being here now, able to give back. It’s very rewarding.”

She says those involved with CAPS, families and volunteers, live for moments of seeing their children and young adults “smile”. CAPS hosts Summer, Halloween and Easter camps, bringing children to various venues and activities such as pet farms, play centres, jump-zone and snowboarding.

On average, a CAPS summer camp costs over €30,500 to run, and an average of €117,000 to run the organisation for one full year. All this is achieved though fundraising.

“It’s just the best feeling in the world. And to think that you had something to do with that child having a good day, or for parent being able to go and have a few hours to themselves, I know only too well just how important that is, and what it means to them.”

Despite her sense of positivity for the future, Noeleen admits the charity’s plight for additional funds is as challenging as ever.

Sustaining the service is a constant strain on resources and funding, and without additional monies coming in, Noeleen estimates that CAPS would last only six more months.

While CAPS gets regular referrals from Enable Ireland and others, it receives nothing towards running costs from central government. This, Noeleen describes as “baffling”.

“We’re always on the bread line, that’s nothing new, but we’re always worrying about the next camp, and where the money for it comes from, or what could we do to raise it?” says Noeleen of the need to keep CAPS going and founder Bernie Nelson’s legacy alive.

“We couldn’t do any of this without the wonderful volunteers and support from the community. Every quiz, every raffle, every donation, it goes to one place and one place only, and put straight to good use. But we need that continued support. We need to keep it going, doing what we do in memory of Bernie, and for the kids and their families who so badly need this service.”