Ahead of a fundraising cycle for Down Syndrome Ireland, ELLIE O’BYRNE talks to a family fighting to get resources for their son.
ALL parents of twins will tell you what a challenge it is when you find yourselves with not one but two little bundles of joy on your hands.
Within hours of the birth of their twins, Tim and Maria, Michael and Paula McCarthy from Whitechurch were also coping with the news that one of their new arrivals, their little boy Tim, had been born with Down syndrome.
“They were born just before seven and Tim was taken down to neo-natal while Maria was brought up to the room with us,” dad Michael recalls.
“We kept asking how he was, and by half-ten a doctor came up to tell us that he more than likely had Down syndrome.
Kevin, (right) Time and Maria McCarthy.
Picture: Denis Minihane.
“The memories are hazy but I think the following morning we were told he needed a test to confirm that that’s what it was.
“Tim was in the neonatal unit for about three weeks, which was really difficult; you’d prefer to have him at home.”
That was four years ago, and Tim is a bright and bubbly pre-schooler now.
A “fierce messer, full of mischief,” as Michael describes him, he is quite literally one in a million: identical twins where one twin is born with Down syndrome account for between one and two pregnancies per million.
Although the twins are close, their developmental milestones are very different.
“Maria started walking early, but Tim was three and a half before he could walk,” Michael says. “From the time Maria was walking the differences between them became more noticeable. His latest thing is being able to say the ‘s’ sound at the end of ‘Yes’ because he always would have said ‘Yeah’ before.
“There’s a plateau where nothing is happening and then he suddenly catches up and you think, ‘You were listening all along, weren’t you?’ He has big developmental spurts and then long waiting times in between.”
Because of Tim’s surprise diagnosis, the McCarthys didn’t know a great deal about Down syndrome and how it would affect their baby when their twins were born. Fortunately, Tim was born without the congenital heart disease often associated with Down syndrome but he does have a weakened immune system and was hospitalised for chest infections in infancy.
But despite Tim’s relative health, families of Down syndrome children need extra supports: physiotherapy and speech and language therapy are vital in allowing children born with Down syndrome to reach their full potential.
Michael and Paula MacCarthy and their children Kevin, Time and Maria.
Picture: Denis Minihane.
Additional health screenings and regular check-ups are essential as people with Down syndrome are vulnerable to a whole range of other health problems such as epilepsy and gastro-intestinal complaints.
Michael and his wife, Paula, both of whom teach in St John’s Central College, where Paula is the vice-principal, had to learn quickly about how best to care for Tim.
“You’re thrown in at the deep end, but that’s the same as having any baby really, it’s a completely new world and you’re up to ninety every second, so it was just different,” Michael says. “A friend of ours in Whitechurch who has a child with Down syndrome rang us when she heard and she filled us in on the extra things to consider for Tim.”
The McCarthys were also visited by the COPE Foundation, who gave them information on what to expect, and, on the advice of their friend, they got in touch with the Cork branch of Down Syndrome Ireland.
“Once you start meeting people in Down Syndrome Cork, everybody’s in the same boat and everyone just gets involved,” says Michael. “There’s parents who meet up and take their children to play centres once a week. There’s a social enjoyment and camaraderie to it, which is also a big help.”
Possibly the most shocking lesson Michael had to learn was the struggle that parents of Down syndrome children face in order to get vital services for their children. “It’s a disgrace,” he says.
“The government will talk about how much they’re spending but it doesn’t match with what services are on offer; anyone in the same situation as us will tell you the same. If it wasn’t for Down Syndrome Cork, people would be in big trouble.
“If we don’t fight for Tim and do everything we can, his development will suffer. It’s upsetting for people when it’s not in your nature to be confrontational and you wind up having to be to get what your child needs; you have to get on the phone and ask when your next appointment is or why you haven’t heard from anyone in six months.”
Early intervention in areas like physiotherapy and speech and language therapy are widely accepted as making an enormous difference in unlocking the potential of people Down syndrome to live full lives.
“It might be the difference between being able to live independently and not being able to live independently when they’re adults,” Michael says, and yet Tim was offered just two speech and language appointments in his first two years through the public system, although he did benefit from physio appointments and music therapy.
Michael says the problem is one of resources, not of will or expertise: “Last year, there were speech and language therapists on maternity leave from COPE and because of the government embargo on hiring there was no cover for them. That’s not COPE’s fault; the therapists are brilliant, but what can they do when there’s no-one to replace them? It falls back on Down Syndrome Cork and the other branches to provide those services.”
Michael and Paula are actively involved in Down Syndrome Cork, with Paula recently joining the board and Michael volunteering his IT skills to upgrade the charity’s website and teach a computer course to adults with Down syndrome. The MacCarthys may seem like they have their hands full — as well as the twins, they also have an older son, Kevin, who is six — but Michael has also signed up for Down Syndrome Ireland’s annual charity cycle, the Tour de Munster. It covers 640km in four days and it’s Michael’s first time participating in such an event; he’s a keen cyclist, but has limited time to train.
“I get out two or three times per week. I’d do bits and pieces, but with three small children you just can’t get out that often so the Tour de Munster is a great incentive,” he says.
Michael and the other cyclists, some of whom are fellow parents from Down Syndrome Ireland, will cover a gruelling 160km per day on a route that takes in some of the toughest climbs in the region.
“I feel up to it so far; from what people are saying, it’s from Dingle up to the Conor Pass that’s the toughest stretch,” he says.
Michael and Paula know that the future holds many new challenges for Tim, especially in terms of education; he’s currently thriving in a mainstream pre-school, but as he develops, the McCarthys have to face each day as it comes and face decisions about whether Tim’s needs are best met in a mainstream school environment or a special school.
“We worried about him getting on with other children but he’s flying it at the moment,” Michael says. “You drop him in in the morning and the other children all say, ‘Tim’s here!’
“But the struggle is in things like getting SNAs in schools. That’s all ahead of us; I hear from other parents about the battles they’ve had trying to get what they should be getting. We’re Tim’s advocates and we’ll keep fighting for him all the way.”
The four-day Tour de Munster charity cycle takes place from Thursday, August 4 to Sunday, August 7, and will see more than 100 amateur cyclists cycle over 600km around the six counties of Munster, raising funds for the Munster branches of Down Syndrome Ireland.
This is the seventh successive year that the national charity has been the beneficiary of the popular cycle.
The 2015 cycle raised €260,000 for the charity, bringing the total raised for the MunsterBranches of DSI to €1.6 million.
Over the partnership’s history, Tour de Munster has developed close ties and formed lasting friendships with DSI, with many of the charity’s parents and friends participating in the cycle year after year. The aim this year is to raise a further €250,000 for DSI.
Paul Sheridan, who established Tour de Munster, said: “There is huge admiration for those partaking and supporting the cycle. These cyclists dedicate months to training and fundraising for the annual cycle.
“The Tour is a real endurance test for the amateur cyclists and the public support makes such a huge difference to all of the participants. Supporters are a vital ingredient to the success of the tour, they contribute to such a fantastic atmosphere, cheering and motivating the cyclists throughout the cycle.
“With all donations going straight to Munster branches of Down Syndrome Ireland, we’re encouraging the people of Munster to dig deep, come out and support, and help raise much needed funds for this worthwhile cause.”