NEWS SPECIAL: Autism support - Eternal struggle for many

TO THE passing eye, the IRD building in Kiltimagh is forgettable, but in reality it has a few stories to tell, of an eagerly anticipated future and of a dream that has been and gone.

First, and most eye-catching, is the mosaic called “Past and Present” and headlined “The 21st Century”, depicting space shuttles and aeroplanes, as well as steam trains and long ships. Unveiled in 2000, it is located on one of the front walls looking out onto the main street, but around the back is a much smaller display, a little sign that tells of another drama.

The sign is for the Áthas ABA (Applied Behaviour Analysis) school for autistic children, a dedicated facility in the Co Mayo town that offered intensive one-on-one tuition and which was the result of the blood, sweat, and tears of a group of families who paid for almost all of it themselves. And now it’s gone.

The Corbin padlock is on the gate, the intercom panel is down, and refurbished units designed to cater for six students have been left vacant. The place flickered into life in 2007 as a result of a lengthy campaign and herculean fundraising, led by Mayo Autism Action.

Six years ago, the Irish Examiner featured the efforts of the group of families involved, a dynamic crew desperate to provide ABA education for their autistic children at a time when the Fianna Fáil-led government didn’t want to know and when the nearest ABA facilities were in Athlone and Galway. One family living in Ballina even moved to Carlow so their son could get a few notches up the ABA list. When Áthas closed last year, it was despite desperate attempts by the families to keep it open. Arguably, it sums up the lot of many families dealing with autism, a parable of seemingly eternal struggle.

The story begins half an hour away in Castlebar, under the shadow of Croagh Patrick, with young Jordan Kearns. Jordan is the 11-year-old son of Pat Kearns and his wife Siobhán. He is autistic and high-functioning and now attending a local mainstream school, but his life was not always this serene.

When he was first diagnosed at age five, Pat says: “For us, as a couple, I think it was one of the most testing patches in our lives together. We never got a rule book and it was a very difficult scenario to find ourselves in.”

Pat’s friend, Castlebar DJ Johnny Oosten, was moved by the Kearns’ struggles and, between them, they concocted the idea of a seven-day-in-a-row Croagh Patrick Challenge. The first climb took place in Jan 2007 and Pat estimates that about €580,000 was raised over the following six years. The bulk of that money went to Mayo Autism Action.

Pat is a broad man with an oaky voice, and if the number of people nodding hello to him as he sips coffee in a Castlebar cafe is anything to go by, he is one of those locals that everyone seems to know. He looks like someone who could lift a decent chunk of Croagh Patrick and walk off with it, but in reality a bad back has meant his skills were applied elsewhere. “They say it’s easier to climb than organise it,” he jokes.

While Jordan never attended Áthas — having benefited from behavioural support supplied by Western Care and having settled in school in Castlebar — much of the proceeds of the mountain climbs went towards the ABA school in Kiltimagh.

Conjuring a special school out of nothing needed a strange alchemy and an astonishing level of effort and perseverance. Among that extraordinary band of people was Paddy Flannery and his wife Lily, who have campaigned for years on behalf of their son Joseph, now aged 17.

Back in 2007, Joseph was an 11-year-old and his parents, like other members of the Áthas group, spoke about hoping State funding would come on stream. Some families said that the act of creating their own school might “shame the Department [of Education]” into stumping up funds. With telling foresight, Paddy told this newspaper six years ago that he believed the then-government “had no shame”.

Joseph is now on the cusp of an uncertain adulthood, still non-verbal but getting older. In the kitchen of the family home in Rooskey, just outside Charles- town, the Flannerys are remarkably sanguine about the death of the ABA dream.

“We didn’t get funding anyways — that’s the bottom line,” Paddy says. “When you don’t have finance in place for anything, it’s like saying I have a lovely house but I can’t afford to pay my mortgage. You’d fall out of love with your house fairly quick.”

It had looked very different back in 2008 and 2009, when the school was operating with highly trained staff and from Sept 2008 to Oct 2010 was managed by American ABA expert Shannon Eidmann as director of education. All the while, the annual climb was taking place. Among those taking part was now Taoiseach Enda Kenny, party colleague John O’Mahony, and local Fianna Fáil TD Dara Calleary. While some of the money raised was dispersed elsewhere the main recipient was still Áthas in Kiltimagh.

“The bottom line is the seven- day climb of the mountain kept the school open,” says Paddy. “For Mayo Autism it was a light of hope there, that something was finally going to be done.”

He says the first time Mr Kenny missed the challenge was his first year as Taoiseach, when he was heading to America to meet US president Barack Obama but, bar two separate tranches of National Lottery funding, state support was thin on the ground. Paddy says that while governments come and go, “it’s the same group of civil servants in the background who call the shots. You’re running around in circles and that’s the way it goes.”

The school cost a lot of money to run. On top of the money raised, the parents had to make a considerable financial contribution. “We spent a lot of money ourselves, between €50,000 and €60,000 between travelling and paying up there,” he says without a hint of regret. The weekly fee started at €250 and then climbed to €600 before dropping back to €400. While the rent on the IRD building was a handy €600, annual running costs were in the order of €200,000.

Paddy was joint treasurer in the finish: “I would visit the school from time to time and you would have offers from people to come in and paint a few rooms. There would be a lot of donations but the books and everything were mad dear.

“It became a bit of a mecca for parents,” he continues. “The fact that mam and dad were seeing a child in a education for three, four, five hours a day must have given them a bit of hope.”

That grinding uncertainty finally gave way to crisis last year, when Paddy and Brian Galvin, another board member, wrote a letter to Health Minister James Reilly outlining the “grave financial difficulties” at the school.

“Are we now to be abandoned by this very State?” they wrote, adding that they had money to keep the school open for another week. It was all over and the letter added: “We are asking our Government one last time to assist us in our time of need and to help in the transition of our children into mainstream and other autism units.”

So in Kiltimagh, the home town of pop impresario Louis Walsh, the school officially opened by Keith Duffy closed its doors one last time.

“It’s sad, very sad,” Lily says. Paddy, who works in the “panned-out” construction sector, says the family got to keep any learning material that was relative to Joseph but “it wasn’t anything major”. Now going to school in Swinford, Joseph seems more sociable but the follow-up programmes are not available as they were in Áthas. “He was happy enough there,” Paddy says. “He could do a lot more there.”

Despite the end of Áthas the families are still in contact. Lily adds:“It’s nice to know, there’s someone else there with the same problem as you on the other end of the phone.”

Paddy has particular praise for Carmel Hiney, mother to Brian and someone he describes as “a soldier”. Carmel says she is still fighting her own battles on behalf of her son, so much so that she literally cannot get away for a face-to-face chat. Carmel is looking at what services are going to be available to him in the future and her voice on the phone is much like it was six years ago, drifting somewhere between eternal hope and wearied concern. It’s yet another battle for the families as their children get older, with Paddy claiming: “When you hit 18, that’s it. You fall off the cliff. There’s nothing there.”

Pat says the take from last year’s Croagh Patrick Seven-Day Challenge was down on previous years. The challenge continues but there is only so many times you can climb the mountain. “It’s [the school] closed and any business that’s closed is a failure, it’s as simple as that,” Paddy says bluntly. “We are sorry it failed but we are glad we tried.”

How could you ever convey all the stress, the hopes, and the hardship that went into conjuring up a place, only to watch it all slip away? If they ever putup a new mosaic in Kiltimagh, maybe the powers that be should consider something that celebrates the efforts of those families. It would be worth marking.

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