Sunday 19 November 2017

'I was so emotional you'd think it was the actual Olympics' - Mum of daughter with Down Syndrome on the club that's building her confidence

How a sports and social club for people with intellectual disabilities is doing so much to build Emma's self-confidence

Elaine Lande with her son Tom, and her daughter, Leona. Photo: Mark Condren
Elaine Lande with her son Tom, and her daughter, Leona. Photo: Mark Condren
Elaine Lande with her daughter Emma and Son Tom.

Joy Orpen

When Elaine Lande opens the front door of her south Dublin home, Emma, her delightful 10-year-old daughter, is by her side, giving me a broad grin. And then, with a shake of her pigtails, she hops off to resume playing with Tom, her animated younger brother.

She behaves like any girl her age. But there is a significant difference. Emma is one of an estimated 7,000 people in Ireland living with Down syndrome (DS). It is caused by the presence of an extra copy of chromosome 21, and means that those with the condition have to cope with various degrees of intellectual, physical, and emotional challenges. Yet, many of their parents and guardians are forced to spend inordinate amounts of time fighting for basic services that are crucial to the very essence of their children's existence; services that might allow them to live independently one day.

When Emma entered this world a decade ago, Elaine, who is head of trading at a major bank, had no idea there was anything different about her new baby. But soon after, she learned that Emma had DS. Fortunately, she was no stranger to this condition. "I have a much-loved first cousin who has DS," she explains, "so I grew up knowing about it. That helped me and my husband Brian understand the condition more than most."

Another important element was the fact that Emma did not suffer from any of the associated medical conditions, such as heart or thyroid problems. "A lot of babies born with DS are taken for treatment soon after birth," says Elaine. "But not Emma. So I could bond with her immediately." Elaine says getting positive feedback from their respective families was also crucial. "Everyone who came to see us made a fuss of Emma," she explains. "No one was commiserating or crying. If people see you are happy, then they'll be happy too."

Elaine says once they'd been discharged from hospital, they began to receive early intervention services from the HSE. Physiotherapy, for example - poor muscle tone is a major characteristic of DS. Emma received services on an ongoing basis from St John of God Carmona Services in south Co Dublin. "During play sessions, the babies are assessed by physiotherapists, social workers, nurses, and so on," says Elaine. "Meanwhile, the mums socialise. I made some seriously good friends there, as did the kids. Now they're all growing up together."

When Emma was five years old, she was enrolled at Kill O' The Grange National School; a mixed, mainstream school. Elaine says the principal and staff have given Emma fantastic support in a "warm-hearted, inclusive environment". Prior to enrolment, Emma had her psychological and physical needs assessed. This assessment dictates the levels of additional support the child will receive. Like many parents, Elaine has reservations about the process.

Elaine Lande with her daughter Emma and Son Tom.
Elaine Lande with her daughter Emma and Son Tom.

"Even if a child is deemed to be 'mild', there are still going to be issues with communications, sensory needs and general behaviour," she says. "Children with DS have many different, often complex, needs."

Fortunately, Emma was also able to access some excellent services at the Down Syndrome Centre in Sandyford. Nonetheless, five years ago, Elaine went scouting around for additional activities that might interest her daughter, and came across a club called Lakers in nearby Bray. She soon learned that this was a community-based social and recreational club for adults and children with intellectual disabilities. Finding Lakers transformed not just Emma's life, but that of her family as well.

"Every Saturday, we drop her off at St Thomas's Hall," Elaine says. "Members are helped to do all kinds of activities in a fun-filled way. There are also summer camps and outings. The Lakers' model is to have lots of volunteers, as the organisation operates on a very low budget. They are also completely transparent when it comes to finances."

Perhaps one of the most important aspects of the club is the Lakers' ethos, which states, "Each member is unique, has their own abilities, and is entitled to a better future. Our members develop skills through a range of activities from sport to drama . . . promoting social skills, growth in self-confidence and self-esteem".

Elaine says Emma was a little nervous when she first encountered Lakers because, by nature, she is a sensitive child. "She tunes into emotions more so than most other kids. She's very shy, and it takes her a while to join in." But the enthusiastic volunteers at Lakers persisted, and eventually Emma began to participate in some of the 39 different activities on offer. She is now a fully committed member.

"Emma and the other children at Lakers have a whole social network, which they wouldn't have had without this club," explains Elaine. "And she will have that connection all her life."

One of the activities on offer is support in participating in the Special Olympics. Emma has won medals already, greatly boosting her self-esteem. "She was proud as punch standing on the podium to receive her first medal," Elaine remembers. "Proud as punch, even though there were only two of them in the race."

Her mum was no less proud. "I was so emotional, you'd think it was the actual Olympics," Elaine admits.

Elaine says, apart from the fact that Emma gets so much from Lakers, there is a much wider dimension which embraces the whole family, as everyone is included in the activities. There is also a unique level of understanding that supports these families. "If I tell someone at the club about a challenge facing Emma, they will listen to me," says Elaine. "You feel you're in a safe place, where people understand what you're going through. There's a real sense of belonging and being supported at Lakers."

Claire Brady, CEO of Lakers, said: "Our mission is to support children and adults with an intellectual disability, and their families. Our aim is to develop their innate skills and self-esteem in an environment which is inclusive and supportive. We have great ambitions to broaden our services, and we recently received a grant from Social Entrepreneurs Ireland, which gives us the necessary funding and business supports to develop the Lakers model in communities around Ireland. We want to give all people with an intellectual disability the same opportunities and choices as current Lakers members."

For more information, contact Lakers, tel: (01) 202-2694, or see lakers.ie

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