“For parents, the Waterford branch means everything.”
DOWN SYNDROME (DS) is a genetic condition which affects approximately one in every 500 births in Ireland, which in turn affects each person with DS differently.
Speaking at the launch of the KNGroup All-Ireland GAA Golf Challenge at Waterford Castle on Tuesday last, Nicola Aylward of Down Syndrome Ireland’s Waterford & South Kilkenny branch pointed out some of those differences.
“Some examples of the possible physical effects include heart conditions, digestive, hearing, and eyesight issues, sleep apnea, and muscular or coordination issues such as gross motor delays, fine motor delays and low tone. From an intellectual perspective, people with DS may have a mild, moderate or severe intellectual disability and most people with DS learn at a different pace to their typical peers. Each person with DS is a unique individual with their own strengths and limitations.”
Maria Rowan, who has been general administrator in DSI’s Waterford and South Kilkenny office in John’s College since last March, is mother of Ben (who attends St Declan’s National School), an eight-year-old with DS.
“I’m in the office 15 hours a week and I help with the day to day running of activities, like keeping in touch with the members when it comes to what they need,” she told me in Waterford Castle’s Munster Room.
“But it’s the parents (of children with DS) who volunteer and organise all of our events, and I’m just doing my bit to help. We’re very, very busy, there’s always something to do and, as Nicola mentioned there during her speech, our branch currently supports 170 members and their families in Waterford and South Kilkenny.”
Maria added: “For parents, the branch means everything. Speech and Language Therapy (SLT) is so, so important for so many of our members. Ben is pre-verbal at the moment and the SLT he receives through the branch is so, so vital.”
Funds raised by this year’s GAA Golf Challenge will help to fund the local branch’s SLT programme which, as Nicola Aylward told the gathering assembled for the launch, is “available to all members of all ages”.
She continued: “Access to frequent, good quality, consistent, best-practice Speech and Language Therapy is crucial for people with DS to enable communication with their family, their peers and the world. Access to public SLT services is irregular, limited in time and the quality of the service can vary widely due to frequent staff changes. The Branch SLT service gives our members the chance to have regular, affordable, high quality SLT with a therapist with whom they have built up a relationship… Our Branch is very lucky to have Grainne de Paor providing our SLT service. She’s a qualified Speech and Language therapist with a Masters in Education who has also specialised in the provision of speech and language therapy to individuals with DS.”
Gráinne’s SLT service includes individual appointments, in addition to school and group therapy visits. She also provides parents with support regarding SLT support work that they can do at home.
Said Nicola Aylward: “The Branch SLT is hugely important to our members and the families have called it life-changing.”
Regarding Gráinne’s SLT appointments with Ben, Maria Rowan said: “She helps us with what we need to focus on with him. At the moment, rather than him having one word when asking us something, she’s helping us to develop that into full sentences and how to help him pronounce his sounds.”
Deirdre Leahy, Maria’s DSI colleague, said that Gráinne “breaks down exactly how someone learns to speak; the different sounds the different methods that she shows us – she gives us homework to do. I bring my daughter Leah (aged four) to Gráinne once a month but we’re given enough homework to keep us going between every session. Leah goes to the Waterford Childcare Centre and Gráinne would go up and visit her there and she gives the staff that work with Leah there similar work so it’s like a little community all working to achieve the same objective: better long-term outcomes for Leah and every child with Down syndrome. Gráinne is such a wonderful resource for both the parents and the kids; she’s alleviating so much frustration for them by enabling them to communicate.”
Gráinne uses ‘Lámh’, a manual sign system used by Irish children and adults with intellectual disabilities and communication needs, a system Ben has used since he was just two years of age, Maria told me.
“It’s been a massive thing for me as Ben’s mother and more importantly for Ben. We’ve come across therapists along the way who cannot communicate (via Lámh) so to have someone who can bridge that communication gap for parent and child here in Waterford – and in South Kilkenny of course – is just huge for us.”
Joanne Ryan joins us at the table, adding: “Lámh courses are taught to the families now whereas years ago it wasn’t; it would have been just the child and one parent learning it, which was ridiculous when you think about the wider social circle who wouldn’t have learned it whereas everyone is learning Lámh now including pre-school and school teachers – and that’s only been rolled out like that over the past two years – and it’s made a fantastic difference.”
Lámh, Maria stressed, is a sign language “that you always say the word with”, allaying fears over any negative impacts on a child’s speech development. “It helps children to listen and to understand. It also helps parents to slow down when they’re speaking, which also gives the child more time to take in what you’re saying. The first time Ben signed for me was when I was putting him in the bath and he told me the water was hot and for him to tell me that was just amazing. Lámh is truly life changing and we’re so grateful for the support that the Golf Challenge is going to give us this year.”
This year’s All-Ireland GAA Golf Challenge – the 21st edition of the event – will be held at Waterford Castle Golf Club on Friday and Saturday, September 11 and 12.
For further information on Down Syndrome Ireland’s Waterford & South Kilkenny Branch at John’s College, Waterford, call (051)323100/(087)6057069 or email [email protected]