'He always makes me feel happy. It's like he has an aura around him' – Sister on misconceptions around adults with Down syndrome
A few weeks ago, Leanne Nolan (22) jumped out of a plane, about 13,000 feet from the ground. When asked how she felt hurtling through the atmosphere, she responds definitively: “Wrong. Very wrong.”
So why did she do this mad thing? The answer is simple: to raise funds for her brother, Eric (19), and others like him who have Down syndrome. Having met the pair, it soon becomes clear that there is almost nothing Leanne wouldn’t do for her brother. “I have always loved him,” she says, with deep sincerity. “I don’t know how he does it, but he always makes me feel happy. It’s like he has an aura around him. When he went to Spain with my aunties, we were completely lost without him here.”
Eric, for his part, is quite casual about this sisterly adoration. “She’s a bit obsessed,” he says with an impish grin, while adjusting his stylish jumper. Eric has also managed to weave his magic, over Conor Griffin (23), Leanne’s boyfriend. “Conor had never had dealings with anyone with special needs until he met Eric,” says Leanne. “Now he’s besotted – they’re best buddies. Conor says that even if we broke up, he and Eric would still be friends.” Her brother nods in full agreement.
This positive outcome was not what Tina Nolan had anticipated when she first learned that there was an issue with her unborn son, almost 20 years ago. “During a routine scan, they discovered he had a blockage in the bowel,” she recalls. “So an amniocentesis test was done, and this confirmed that my baby would, more than likely, be born with Down syndrome.”
According to Down Syndrome Ireland (DSI), this is a lifelong condition which increases the risk of certain health issues. It may also affect physical development and learning abilities, though each person with Down syndrome is unique and different.
“Having a new baby is an exciting and happy time for the whole family, but it can also be overwhelming and a little bit frightening for parents when they first find out their child has Down syndrome,” says Nicola Hart, head of DSI’s member support team. “Some may feel scared at the prospect of bringing up a child with an intellectual disability.”
And such was the case for the Nolans. Suddenly, their lives were rushing along a completely unexpected trajectory. “I cried and cried, and I was really shocked,” says Tina. “I think that’s because I had a huge fear of the unknown. I now realise that my biggest worry was how I would manage to look after a child with special needs.”
As the date for the baby’s birth approached, Tina’s fears increased. “We knew he’d need surgery straight away,” she explains, “because of the blockage in his bowel; we also knew he would require additional internal reconstruction.” But when Eric was born, at the Coombe Women & Infants University Hospital, all these considerations paled in comparison to the love she instantly felt for her baby. “He was just gorgeous; a little blond beaut,” she remembers fondly.
Later that day, Eric was baptised. “I thought that was just lovely,” says Tina, “because we knew he was facing major surgery.” Soon after, the infant was whisked off in an incubator to Our Lady’s Children’s Hospital, Crumlin. The next three months were traumatic for everyone concerned. “He was struggling,” Tina remembers. “There were surgical problems, and he battled to put on weight. I used to look at him and my heart would just break.”
But eventually, Eric joined his family at home in the Dublin suburb of Walkinstown. Four years later, his brother Jason was born. It was decided to educate Eric at St John of God School, Islandbridge, a special-education school, rather than a mainstream school. “From the word go, it was the making of him,” says Tina. “He graduated last year. Not long after, he said to me, ‘Man, I’m having a bad day – I’m having trouble moving on’.”
But in truth, Eric has moved on, and is now busy at not just one but two places of learning. In the mornings, he attends Greenhills College in Walkinstown, where he studies maths, which he loves; word processing, and art and design. In the afternoons, he’s at Green Gables Training Centre in Tallaght, where he does arts and crafts, computers and swimming.
He also plays basketball, likes to sing, and he loves a good party. But his future remains uncertain. Leanne would love to see her brother working, like most people his age do.
“At present, only about five per cent of adults with Down syndrome are in full-time employment,” she explains. “That’s really shocking, as many people with Down syndrome are quite capable of holding down a job. Eric, for example, makes his own bed, folds his clothes, keeps his phone charged, and prepares lunch for himself. Meanwhile, I’m running around looking for my charger, or my phone. Right now, he’s learning how to use computers, and he is capable of learning new skills. But that won’t happen if the people in the workplace don’t know how to deal with him.”
Right now, Eric would like to get a full-time job. With the new skills gained from his course, and the support of his family and local services, he will hopefully achieve his goal. But Leanne says it’s also important to educate employers, and to help remove any misconceptions they may have around adults with Down syndrome.
That’s why she and Conor have signed up for the Millennial of the Year competition. This new fundraising initiative was founded by Cork man Daniels Hinds (23) and 13 young Irish graduates, to help “change the lives of fellow millennials for the better”. This year, they are raising funds for a special programme for people with Down syndrome.
Gary Owens, CEO of DSI, says, “the Millennial of the Year competition involves the country’s top 100 millennials raising over €100,000 to help fund DSI’s national Ability Programme, which aims to provide millennials with Down syndrome access to meaningful employment opportunities.”
At the time of going to press, Leanne and Conor’s parachute jump – which they paid for themselves – had raised in excess of €2,000 in direct sponsorship for DSI.
It may have felt ‘wrong’ jumping out of a plane – even with a parachute – but Leanne is certainly showing she has the guts to do what is right for her much-loved brother.
The Millennial Ball takes place at the Mansion House on November 24. To support the Millennial of the Year competition and Down Syndrome Ireland, see fundraising.themillennialoftheyear.org or downsyndrome.ie
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