When Edelle Canning’s son was diagnosed with ASD (Autism Spectrum Disorder) at the age of 10 she made it her mission to find out as much about the condition as possible - and to do everything she could to help him lead a full and happy life.
She never thought that this would, within a few months, lead to her standing in front of a packed hall of parents and community workers and taking the first steps to setting up POCA (Parents of Older Children with Autism).
“I had never done anything like that before in my life,” the mum of two said. “And really, I started POCA because I wanted my son to make friends - to build his social skills.”
Edelle said she was always aware there was something “a bit different” with her eldest child. “But he was my first child and I didn’t really have a frame of reference. He would play with my friends’ children - but he would freeze when he was put in unfamiliar situations.
“Even at that, he was so well cushioned at home and his school - Greenhaw Primary - were brilliant - so he was well cushioned there too.
“But I would say by the age of seven we could see where he was struggling with social interactions. He was so reluctant and uncomfortable trying anything new.”
Edelle began the long process of trying to get her son assessed and diagnosed. “It took a good three years to go through the process,” she said. “Any parent of a child with Autism will tell you it can be a long and difficult process.”
So Eoin was ten when he was given his diagnosis. “I immediately looked into what support groups were available - places were Eoin could go and meeting people who understood what he was feeling and make friends, and places where I could go and speak to other parents.”
Initially signposted to COS (Circle of Support) which Edelle describes as “an excellent group who do amazing work” - she said that many of the families working with COS had younger children.
“Every age group throws up new issues and new concerns. I wanted to help children the same age as Eoin. So I put a Facebook status up one Friday and over the weekend the post was shared, and I was contacted by around 25 families - all interested in finding support for their children.”
Edelle, who was midway through studying for her degree in Sociology at the time, then found herself at the front of a packed meeting in Pilot’s Row, where POCA was born.
“The summer was coming and I wanted to have something in place for Eoin, I suppose. Parents of children with ASD will know that the summer poses a lot of challenges for our children because of the lack of structure and routine.
“So we came away from that meeting with Pilot’s Row offering us use of their youth wing and with the idea that we would put together a summer programme. I had £70 to put together that programme,” Edelle laughed.
And yet she managed it - down largely she said to the generosity and goodwill of the community.
“I decided to go out there and talk to people - as simple as that. It was amazing, I couldn’t get over the positivity of people who I spoke with - and how much they wanted to help and with their support we were able to put together a full programme.”
Within a short space of time, the group had outgrown the Pilot’s Row Centre and moved to their current home at Lenamore Youth Club.
“We hold our youth club every Friday afternoon and we continue to hold our summer scheme.
“The organisation has turned into our wee family. The children come week in and week out - we like to have themes or arrange age appropriate activities.
“It is brilliant to see the young people come out of themselves - and to find confidence in themselves.”
Edelle said it would be impossible to run the organisation without the help of the many volunteers who keep everything running smoothly.
“We have had people who have come along to entertain the children one week and who have come back week in and week out to help out.
“We have parents who help with activities and older children with ASD who offer great peer support and are brilliant role models for the younger kids.
“We have siblings who come along, grannies and grandas, aunties and uncles - and the support is there for them all, but all while having a bit of craic.”
Edelle says she tries not to take herself too seriously - and the main aim of POCA is to celebrate the differences of our young people and to have a lot of fun while doing it.”
And as for Eoin - now 14 and just starting to study for his GCSEs at St. Columb’s College, Edelle says he is thriving. “I set up POCA so that he could make friends - he has made a lot of friends.
“He is doing really well at school - and has the support in place to ensure he will continue to do well at school and through to university and beyond.”
To find out more about POCA and their forthcoming events visit their Facebook page at www.facebook.com/parentsofolderchildrenwithautism