A Ballyjamesduff mother who is grateful for the help her family has received from Cavan Autism Parents Support (CAPS) is launching a fundraising album for the group this weekend.
Back in April 2016 Noeleen and Carl Smith had two of their children diagnosed with ASD on just one day. In truth the diagnosis for their youngest child, Aoibhinn now almost four years old, had been flagged well in advance.
In her first six months, Aoibhinn had been hitting her milestones in, she could even wave goodbye, but her development slowed.
“She started to regress - there was a big delay in her crawling. Autism never crossed my mind, I thought it was hips dysplasia.”
Medics ruled out a hip problem, and referred her to a paediatrician, which was the first time autism was mentioned.
“He said he thought it might be autism. That day I actually came out of the hospital with tears in my eyes - more so than a couple of years down the line when they actually gave the diagnosis, because we more or less knew at that stage,” she recalled.
Having come home “in shock”, her fears turned to older brother Ríordan, now aged five.
“I always tried to ignore the little feelings I had about him, but then when we heard the news about Aoibhinn - that it might be autism – then I started to look at him. His was a lot more subtle – he’d hit his milestones, but just about.
“But they’re all different on the spectrum – as they say: if you know one child with autism, you know one child with autism.”
Ríordan acted up in front of one of the nurses and Noeleen tried to dismiss his “really hyper” behaviour as him “being a bit of a monkey today”.
“She [the nurse] kind of let it go, but when I went home she rang me,” Noeleen recalls with a laugh of being caught out, “and said, ‘I think we’ll have to get him assessed’.
“A year after that we went down the private route to get him assessed because in the public system, you are waiting a long, long time and to get any help in terms of domicilary care allowance, and that, you need a diagnosis.”
Noeleen speaks of struggling with “grief for the loss of our ‘normal’ children”, a process that took about a year.
“I just remember it being very very hard,” she says, recalling finding it especially tough when hearing other people enthuse on the progress of kids of similar age.
With the passage of time her “grief” turned to acceptance.
“You just accept it, and with Aoibhinn, when she does hit a milestone, it’s a million times better. It’s so much more special. She’s improving every day.
“In her cot in the morning, usually she would just lie there until we go into her. But now she has started going – ‘Daddy! Daddy!’,” Noeleen says mimmicking Aoibhinn’s chirpy voice.
“It’s things like that – me and Carl are just lying in bed going – ‘did she just say Daddy’? When she does things like that it’s a million times better.
“This is who she is, this is who he is. And you just accept it and go from there.”
“At the same time – they’re just amazing kids. Ríordan is five but could tell you nearly where every country is in the world. He’s got the reading ability of a 10 or 11 year old. He’s incredible.
“Children with autism, they just need people to take their time with them, to get to know their little ways.
“Kids with autism, they mightn’t seem like they want to be your friend, but they need and they want friends as much as any other child, but people have to give a little extra time to get to know their quirks and stuff.”
Noeleen says that the support she received from Cavan Autism Parents Support (CAPS) was invaluable.
“CAPS was the first place I went after we got the diagnosis, and immediately from the first meeting, I felt support, that I wasn’t on my own – they are an amazing bunch of women and they rely solely on fundraising.”
To repay that support and to help raise awareness of autism Noeleen recorded an album with some of her family.
“We all love to sing but we never get the opportunity to sing together and that was going around in my head for a while and, eventually, I said it would be lovely to do a CD to raise money for autism.”
Her father Brian Smith, sisters Majella Smith and Irene Costello, sister-in-law Sonja Smith, and nieces Grace and Isobella Smith were all roped in. Enlisting the expertise of musician and producer Martin Quinn of Jam Studios in Carnaross, the album ‘Perspectives’ became a reality.
Amongst the track list are covers of ‘True Colours’, and a capella version of Danny Boy, three Christmas songs, and one original composition - ‘Tá mé anseo’ - by Noeleen’s eldest daughter, 14-year-old Kyla.
“She wrote it about her little brother and sister – to say she is always there if they need her,” Noeleen explains.
Her hopes for the album are based on “for such a worthy cause that’s so close to my heart”.
“I’d just love to raise as much as possible for CAPS because it’s such a great organisation. It’s vital for a community – they offer so many workshops, summer camps, Easter camps, all sorts of camps for our kids and it’s great for them to be able to do these things they same as typical kids can.
“And it’s so great for the parents because they offer so much support – so I’d just love to raise as much as possible for them so they can continue doing so much good work.”
Noeleen Smith will launch ‘Perspectives’ at TM Vintage Bar, Kilnaleck on Friday, November 3, and in The Royal, Ballyjamesduff on Friday, November 10 at 8.30pm.