Support for children with Down syndrome helps child and parents thrive

Raising a child with Down syndrome is not without its highs and lows — with parents saying that support services differ wildly around the country, reports Arlene Harris.

RICHARD Dawkins, author and renowned atheist, sparked outrage last month when he stated that children with Down syndrome should not be given the right to life.

In a posting on Twitter the controversial Oxford professor said it is ‘immoral’ not to abort babies with the condition because when parents are given a diagnosis in early pregnancy, they should terminate and ‘try again’.

His comments come hot on the heels of the moving story of a little baby born to a surrogate mother in Thailand and apparently abandoned by his Australian parents because he had Down syndrome.

Gammy, now seven months, was left behind while his parents, David and Wendy Farnell returned to Australia with his healthy twin sister Pipah. The reasons for his ‘rejection’ still remain unclear but his plight has raised concerns within the Down syndrome community.

Pat Clarke is the CEO of Down Syndrome Ireland (DSI). He and his colleagues are concerned for the child’s welfare.

“We were all saddened to hear the details and were concerned about the welfare of the baby so contacted our members in the region to work with them in supporting the family.

“DS International has been invited to advise Hands Across the Water, the lead charity in the fundraising efforts for baby Gammy, as to the appropriate care as he develops in the future.”

Clarke says he hopes baby Gammy will receive support like what DSI offers in Ireland with “national leadership and local support from cradle-to-the-grave for all people with Down syndrome and their families”.

Matt and Fidelma from Kildare – who have three children; Isabella (10), Layla (7) and Heidi (5) — have been helped by DSI for the past seven years. Their middle daughter has Down syndrome and although the diagnosis was unexpected, they received a lot of support adjusting to the news and learning how to help Layla overcome any difficulties she would encounter growing up.

“I wasn’t aware that Layla had Down syndrome during pregnancy, but I had great support from my family, friends and DSI after the birth,” says Fidelma.

“We also used Parent Link which is a voluntary service provided by other parents selected by DSI who offer a listening ear and have experienced the same anxieties and fears that I was having. And DSI Kildare provided a counselling service which Matt and I found invaluable.

“Layla has always needed to attend a lot of hospital appointments and regular speech therapy and has missed quite a bit of school because of this, so needs more one-on-one time with homework to help keep up with the class. She also needs hands-on care from us at home in her daily routine and visual prompts when carrying out daily challenges.”

But while Layla does experience some difficulties, her mother says she is a very well- adjusted and cheerful child with a very full and busy life.

“Layla is a wonderfully happy, confident and outgoing girl,” says Fidelma. “She has a fantastic sense of humour and loves playing with her sisters and friends. She enjoys ballet, Girl Guides and swimming. She attends mainstream school and is an excellent reader. She also has a brilliant retention for the Irish language and I never imagined she would manage this. So she is full of surprises.

“But she has difficulty with writing as she has very low muscle tone and this also tends to affect her balance. She finds most daily tasks difficult but with practice and guidance, I’m confident, she will eventually achieve these.

“Layla has provided us with a new insight into parenting and has taught us more than we could have ever imagined,” says the mother-of-three.

“Parenting any child has its challenges, but when you are faced with a disability as well, it can take on a whole new direction — but the small daily achievements are a constant delight.

“Our concerns for her future are mostly the same as for our other children. But, as Layla is only seven we can’t say at this stage if she is going to be independent. While this would be her greatest achievement, we are aware that she may be living with us for our entire lifetime and sometimes fear for what may happen when we are gone.

“However, we have a very positive view of life and have learned not to worry too much. No one knows what the future holds so it can be a waste of time worrying about it”.

Susan and Jimmy O’Kane from Co Meath have four children – Molly (14), Alex (12), James (7) and Emma (3). Their youngest has Down syndrome and while they receive great support from DSI now, they experienced very little when Emma was born three years ago.

And although they met a nurse who offered them the advice they needed at the time, they still feel like they are struggling to get the best for their child.

“We feel that the initial support we received after Emma was born was not adequate as there was very little information offered to us and we didn’t meet a DS liaison officer for about a month,” says Susan. “But we were lucky enough to talk to a nurse who also had a child with DS. She gave us straightforward advice from a parent’s perspective.

“Emma’s main medical complaint is that she suffers from hearing loss and unfortunately the medical system was not in a position to give her what she needed so we travelled abroad for surgery to have hearing aids fitted.

“We feel like we are in a continual fight to get Emma the services she needs. The DS community in Ireland is very close-knit and we see such a wide variation in the level of services provided which depend on where the child lives.

“We rely on our service providers for occupational therapy, physical therapy and speech and language therapy but feel that they are unable to provide the level of service required.”

The mother-of-four says despite the difficulties they have experienced, they will continue to fight to ensure their child gets the best possible start in life, whatever the future may entail.

“We are fortunate that Emma is our fourth child because we know what ‘normal’ looks like in terms of developmental milestones and can help her to reach those,” says Susan. “This is always a huge achievement for her and the excitement it creates makes all the work done worthwhile”.

“Emma is full of mischief as any other 3½- year- old would be and we treat her like any of the others. She loves to be involved in everything and is very sociable with a good comprehension of her surroundings.”

nA four day cycling challenge of 120 cyclists in the six counties of Munster has just been completed which DS Ireland hopes will raise over €300,000 for the six Munster branches.

For more information and support visit www.downsyndrome.ie