Grateful parents clock up miles for Ability West

Fifteen-year-old Andrew from Menlo has autism and although the diagnosis was a blow to his parents about 12 years ago, Ray and Brega can’t imagine life being any other way than the way it is today.

They are a very positive couple, who admit the early years with Andrew were hard until they came under the services provided by Ability West, an organisation which is dedicated to supporting children and adults with special needs.

Ray and Brega were so grateful for the support, both practical and otherwise, provided by Ability West, that they got involved themselves to help other parents who found themselves in a similar situation.

Andrew is the youngest of three children (his brother James is 23 and his sister Laura is 20) and appeared to be just like any toddler until he lost his speech, became restless and quite simply almost unmanageable.

There were a lot of sleepless nights, worrying days and many doubts and questions about the future in those early years. Andrew even started school but the problems only escalated.

He had sleep issues and keeping him safe became a priority as he didn’t have the social skills to be aware of danger involved in everyday life, such as crossing the road and staying away from the fire. Brega says it was hard to accept his autism at the start but they had no option but to find a way of managing things better.

They looked around for options because they knew mainstream education was not working. After investigating the options available to them in Galway, they decided on St Joseph’s Special School in Snipe Avenue, Newcastle.

“I knew the minute I walked into the school, we were doing the right thing. I got a good feeling about the school. I liked the warm atmosphere, the colours on the wall. Basically, we never looked back. Simply put, starting him in that school gave us back five hours’ sleep a night,” remembers Ray, who is originally from Mervue.

It seems like such a simple thing now, but that extra sleep for the Kellys made a significant difference to their lives.

“We didn’t know what to do or who to turn to in the early days. We didn’t know what was wrong with Andrew, or if there was anything wrong with him. I do remember the isolation, the loneliness of it,” says Ray.

“It’s like a family bobbing along in a boat in the middle of the ocean. That’s how isolated you feel. We didn’t even know how to source information or how. Nowadays it’s different with social media . . .  there’s more access to information.

“But I remember going along to an information day in the Menlo Park Hotel and feeling that there were other people in the same boat, people I could identify with,” he adds.

That fateful meeting was organised by Ability West and one of the welcoming people on the day was Breda Crehan Roche, who is the organisation’s CEO now.

The Kellys were so impressed with that meeting that they continued attending other meetings and functions that were organised by Ability West.

“We looked at the meetings as places to meet other parents like us and get information. Of course the more we attended meetings, the more involved we got and now we are in a position to help others,” says Brega, a native of Claregalway.

They both mention the late Joe Neylon (who founded the GRÁ Autism Parents Group) and Sheila Ryan for pointing them in the right direction and can’t stress strongly enough how important it is to be informed.

Andrew loves his school. He goes there daily and the family get respite one weekend a month through Ability West. In the long summer months when school’s out there are day projects, day trips and enough going on to keep Andrew to some sort of routine, which is what he likes.

He also likes nothing better than to shake a bottle of fizzy water. That could keep him occupied for hours. And for some reason, he loves Who Wants to be a Millionaire?, although in general he doesn’t watch much TV.

Through the years with Ability West, Ray and Brega have met so many people. In fact, their circle of friends is mostly made up of other parents with special needs children.

The couple has also raised at least €34,000 through organising a five-mile walk in Menlo for the past seven years. It started with up to 100 people consisting of family, friends and the local community but now attracts between 300 to 400 people. That walk involves a €10 donation and not a sponsorship card which puts pressure on people to collect money.

“We have also walked parts of the Camino in Northern Spain and I have done two half marathons in Chicago, all to raise money for Ability West,” says Brega, who works a few days a week in the Great Outdoors shop in Eglinton Street.

For more, read this week’s Galway City Tribune.