Down Syndrome centre set to open in spring 2020

FOR Mary Glynn, every time she takes the M1 from Dublin to Mayo she remembers a night five years ago when she and her husband Fran pulled in on the hard shoulder to give their baby boy pain relief, writes Jemima Burke.

Cillian had successfully undergone heart surgery, but Mary and Fran both knew there was still a long road ahead. Within days of coming home to Balla, Cillian was progressing in leaps and bounds.

Mary smiles: “We fought so much for Cillian to live. Today he is a happy, healthy boy.”

Born with Down Syndrome in 2014, Cillian is one of 174 members of Down Syndrome Mayo. This year the organisation has undertaken its biggest project to date - a dedicated centre of excellence in Swinford.

The centre, donated by the late Máirt Campbell, will include a purpose-built sensory room, treatment rooms for speech and language therapy and physiotherapy, a fully accessible bathroom and a large multi-purpose room. Planning permission was granted by Mayo County Council in May of this year.

Adrian Doherty from Ballina, and a member of the planning committee, often takes calls and sends emails during lunch-hour breaks in work just to keep the ball rolling on the project.

Speaking of the initial phase of planning, he said: “We were green going into this but it’s amazing the way the community has pulled together with support. We have jumped a lot of hurdles and a lot of ducks had to get into row before we could apply for planning permission. Ideally, we would have loved to have been finished the project by now. But that’s not the way it works unfortunately.”

He describes the centre in Swinford as 'a chance to do something truly amazing for the west'.

“It’s a little overtime but once we finish it will be there forever.”

The projected cost for the Down Syndrome Centre is approximately €500,000. With the generous financial support that the late Máirt Campbell provided, a grant of €100,000 from Smurfit Kappa in Galway and the monies raised from small business fundraisers and community events across the county, around €320,000 has already been raised.

Adrian stresses that the project could not continue without support from local people and organisations.

“We still need funds. Let’s say you’re organising a run or a cycle event, we would really appreciate if you might consider us as a charity partner or partial recipient of funds.

“We hope that when people see what we are trying to achieve with the bequest of Máirt Campbell, not only for our community, but for communities all over the west, that they will get behind us. We just need some extra help to make this dream a reality.”

For five-year-old Cillian Glynn his journey has only begun, but there are also dozens of adults with Down Syndrome across Mayo.

Mary Diamond, from Kiltimagh, led the nation in a physical and emotional revamp as one of five Operation Transformation leaders almost two years ago. Her 28-year-old son Gary was a key element in her decision to try out for the show.

“I was bogged down wondering how life was going to go for Gary,” she told The Connaught Telegraph. “I was sick worrying about his future, as I’m sure other mothers worry who have children with additional needs.

“It was after going on the show I realised you have to get yourself sorted before you can be of help to someone else. As Dr. Eddie told me, you can’t pour from an empty cup.”

She sees the new centre in Swinford as a potential base for parents to meet one another, talk, and share experiences. “It’s good to talk, simple as that,” she said. “I’m so excited about this centre.”

While Gary was very well supported in his early years by Western Care and currently by Rehab Care, Mary remembers how she sometimes struggled with the lack of resources when her son was in his teens.

“Gary’s brother would be going off with his friends and Gary could not understand why he couldn’t go too. That’s when it would have been lovely to have had a base to say ‘well, we’re going off to Swinford’. This centre would have saved some tears in our house back in the day.”

A sociable young man, Gary can be found working in Kiltimagh library once a week, and one of the key goals that Adrian Doherty, Mary Diamond and Down Syndrome Mayo has is to change the conversation around adults with Down Syndrome in terms of employment. The new centre, once completed, will provide courses and workshops for teens and adults to prepare them for the workforce.

Adrian is adamant: “There is no reason in the world why these people should not be working. They are willing to work, and they want to work.”

It is a sentiment echoed by Gary Owens, the CEO of Down Syndrome Ireland: “If our people with Down Syndrome are not being empowered, they are not being looked after.”

His message to employers is: “Be brave and take people on.”

“People with Down Syndrome are very loyal, they work hard, and they always turn up on a Monday. They never moan, and they have a huge impact on morale in companies. Staff issues seem to disappear when staff are working with people who have some sort of a challenge.”

Gary also points to early intervention as a crucial factor in terms of a child’s lifetime development.

“Early intervention is key. Typically, children in Ireland should be getting nearly three times what they currently have in terms of speech and language therapy.

“The more occupational therapy and physiotherapy a child receives in those first four to five years the more prepared they are for mainstream education. But the government has not copped on that more early intervention services means it will cost the State much less down the line.”

Adrian reiterates that the mission of Down Syndrome Mayo is 'not to solve all the problems with the lack of early intervention services but to help in some way with subsidies, services and advice'.

It was an Irish writer who once said: “People are always blaming their circumstances for what they are. I don't believe in circumstances. The people who get on in this world are the people who get up and look for the circumstances they want, and if they can't find them, make them.”

Without a doubt, the parents and families of Down Syndrome Mayo are shining examples of people who are ‘making the circumstances’ for a better and happier future and who continue to forge a path to make the journey easier for generations to come. People with Down Syndrome may walk a less travelled road but their potential in society should never be underestimated.

The Down Syndrome centre in Swinford is expected to open in spring 2020. To find out more about Down Syndrome Mayo, look up their Facebook page, https://www.facebook.com/DownSyndromeMayo/, or call (094) 9026703.