Down Syndrome Ireland is organising conferences for new parents to ensure they get all the support they need
FOR MANY expectant couples the thought that their child might have Down syndrome is a thought that fills them with dread, but that is not how the O’Neill family have experienced the reality of it.
In August 2007, Erica gave birth to Charlie in the National Maternity Hospital in Holles Street. Now 17 months old, Charlie has learned to communicate with sign language and looks happy and healthy.
When Charlie was born in Holles Street, the paediatrician set a positive tone from the beginning pointing to students with Down syndrome who recently completed a pioneering Trinity College Dublin course in contemporary living which will allow them to enter the world of work.
Robert and Erica, who live in Firhouse, south Dublin, say Charlie has been an overwhelmingly positive experience which has pushed them into doing things that they would never have done before and the only drawback has been cruel things that people have said, sometimes intentionally, more often unintentionally.
It is a common problem that people often do not know how to react when a child with a physical or intellectual disability is born. They don’t know what to say and often end up saying the wrong thing. Those who work in the area of Down syndrome advise against expressions like “sorry” or any other expression of commiserations towards the parents.
Other ill-advised comments include saying that the child is a gift from God, that they are special children or especially loving, saying that a child doesn’t look like he or she has Down syndrome or that their symptoms appear to be mild.
It is also not appropriate to say “Down syndrome child or children” as if the children involved were defined by their disability. The correct expression is children with Down syndrome.
“One particular person rang Robert and said ‘commiserations’ after having a baby,” says Erica. “The thing that upset me is you carry a baby for nine months, you go into labour, you have that child and people do not even say congratulations. Maybe things haven’t worked like many people might have thought but you still have a baby at the end of it.
“The least that people can do is say ‘congratulations’. People say to us, ‘it must be hard for you’, but it’s not. It’s as hard as you make it,” she says.
Robert says they resolved from the beginning to treat Charlie no different from their other two children, Heather (6) and Aidan (4).
“A friend of mine said to me around the time of his first birthday, ‘if God came down and clicked his finger and changed Charlie, would you want it’ and I said ‘definitely not’ because he would not be Charlie.
“We’ve fallen in love with him. I have the same expectations for him as I do for our other two children.”
Charlie attends Cheeverstown House, a centre for children with special needs, and Robert ran the Dublin City Marathon last year to raise funds for it. Running a marathon is something he would not have contemplated before Charlie was born.
“The gas thing is that people feel sorry for us. People are saying ‘God love them with a Down syndrome child’, but it is the complete opposite. We couldn’t be happier,” Robert says.
Though the O’Neills are determined to be positive and optimistic about having a child with Down syndrome, many parents struggle with the experience.
This weekend Down Syndrome Ireland is hosting a conference for new parents who have a child with Down syndrome under the age of two.
The weekend at the Grand Hotel in Malahide is now sold out with 50 couples taking part. Down Syndrome Ireland intends to host another two conferences for new parents in 2009 such is the demand.
Down Syndrome Ireland chief executive John Lindsay says: “The one thing that comes across strongly is new parents need all the support they can get in the early years.
“We need to inform them about all the early intervention teams available from the HSE. With the odd gap here and there the service is fantastic throughout the country. Parents need to know how to access them.”
The weekend is designed to focus on the parents whose needs are often forgotten about when a child with Down syndrome is born.
Counsellor May Gannon, who will advise the couples taking part, says parents of children with Down syndrome often struggle with feelings of guilt because they do not regard the birth experience as being as positive as they had expected.
“Nobody celebrates the birth of a child with Down syndrome in the same way. They don’t feel the same joy. There is a lot of concern and worry about the child because you’re plunged into a world of disability that they don’t know anything about,” she says.
“I will be emphasising that they have a baby first and foremost and that they do experience different feelings at the beginning. Any negative feelings they experience are actually a positive sign that they are coming to terms with the situation.”
Though the chances of having a baby with Down syndrome at one in 600 is relatively high in medical terms, most parents do not even consider the possibility.
“The number of parents who tell me it never occurred to them is far more than those who considered it as a possibility. Those who do, say they will deal with it when it happens, but it is something that is difficult to prepare for. It takes a huge commitment. There are different care issues around, but you do exactly as you do with other children, just more of it.”
Gannon says children with the condition are often subjected to stereotyping both positively and negatively which benefits neither them nor their parents.
On the one level some people regard children with Down syndrome as intellectually and physically incapable in every respect despite the fact that the majority of them now attend mainstream schools.
On the other hand, she says children with Down syndrome are stereotyped as being veritable angels and their parents are told to accept a “child from God” – an expression which has its roots in the old Irish phrase “duine le Dia” or “people of God”.
“Parents who are told that the child they have with Down syndrome is a gift from God should say to the person who says that, ‘you take it and look after it’. They don’t feel that.
“Having said that, the majority of families say children with Down syndrome bring a lot of gifts to the family and they can contribute to society in a real way. They have a contribution to make and it is not all negative,” she says.
This weekend’s conference begins an extremely important year for Down Syndrome Ireland. Last year it won the right to host the 10th World Down Syndrome Congress which will be held at Dublin City University from August 19th to 22nd.
It will have as its theme Lifelong Living and Learning, a recognition that the life expectations of children with Down syndrome is radically different to what it was even 10 years ago.
New parents interested in taking part in future Conferences for New Parents should contact Down Syndrome Ireland at 01 426 6500 or 1890 374 374
