IF Frances Burke’s ten-year-old daughter, Aoife, did not have Down’s Syndrome, the issue of disabilities would not concern her, she admits frankly. So she understands the indifference of others to her situation, or at best the occasional nature of their concern. And she harbours no ill-feeling about it.
Bitterness, resentment, anger and disappointment are emotions that never gained ground in her world. Instead she has always been positive, happy, thankful and accepting. She won’t try to sell you her disposition as a manual for responding to the kind of news she and her husband, John, got when she was half-way through her second pregnancy, but she is willing to offer others the benefit of that experience.
As Chairperson of Mayo Down’s Syndrome, she now tries to help other parents who are faced with the reality that faced her. Her focus is not on changing the world - or even its treatment of those with special needs - but on spreading the word that there is a network of support out there.
“It’s a parents’ network, through which parents can get advice and support and through which activities are organised, for the children with disabilities, the parents and the siblings, they’re very important too,” explains the Wexford native, who now happily resides in Ballinrobe.
Frances has been dealing with the various problems associated with Down’s for over a decade. Living in Lewisham in southeast London at the time, she and John were told the news of Aoife’s condition several months before she gave birth. It allowed them time to prepare for her arrival - and to deal with the news.
“We had a lot of information at an early stage without any baby to deal with. I think you need to grieve when you get news that your baby is not going to be exactly what you expected and because we knew early on, we had started that process, I suppose you would call it, before we had Aoife,” she believes.
In England, screening for abnormalities during pregnancy is part of the routine monitoring of expectant mothers. Here that is not the case, meaning that most parents are hit with the news at the time of the baby’s birth. No preparation, no period of adjustment, just cold reality. Frances is grateful that they had that time and that Aoife had the start she had in terms of services and intervention programmes, which are better co-ordinated in England than here.
“In the hospital, they knew all about Aoife before she was born, so straight away we had cardiac services [Aoife also had a heart defect at birth] and disability services and they were all community-based and community-led.
“From about nine months, Aoife got a service called Portage, an early intervention service that focuses on development - communication skills, independence, social skills. One of the big differences here is that you really have to fight for services.”
The family moved to Ireland in 1998, building a beautiful home close to John’s parents, just three miles outside Ballinrobe. And, while finding out what was available here for Aoife took time - and was underwhelming in many ways when discovered - they have had no regrets about the move. The most difficult part for Frances was going back to work full-time, at a stage when she would have preferred to spend more time with Aoife. But she has accepted the situation and proceeded with it in the pragmatic way she seems to approach all obstacles - with a smile on her face and a positive attitude. And through her work - midwifery in Mayo General Hospital - she is able to offer support to other parents of children with Down’s Syndrome.
“When I started, the nurses started to call me if a baby was born with Down’s Syndrome. I became, without trying, a source of information and a resource. It’s great because it means that I meet with all parents of new-born babies with Down’s Syndrome so I can let them know about the Association and about what’s available to them.”
Through her work, she has encountered many different reactions from parents to the news that their child has Down’s, and while she acknowledges that each must deal with it in their own way, she offers some words of advice - of her own and from an author who impressed her.
“Families have to grieve for what they didn’t get, but you can’t let that grieving go on forever or it will ruin the rest of your life.
“I read a piece by an American author recently and she likened the experience of having a baby with Down’s to preparing for a trip to Italy. You learn the language, you learn about the food and the wine and you look forward to all the wonderful things Italy has to offer. Then you land - and realise you’re in Holland, and you’re wondering what happened to all the beautiful things in Italy that you were looking forward to. But then you look around and see that Holland has tulips and windmills and lots of other fantastic things - and it’s the same having a baby with a disability. Children like Aoife bring other gifts and you learn to appreciate them,” she says.
Frances counts her family’s blessings. Aoife has been lucky enough to attend a mainstream school (St Joseph’s Primary School, Ballinrobe) and learn from her peers there, and now she has moved in to her second year as part of a special class in Foxford National School, a class she shares with two other boys, each of whom has autism, a condition with which Aoife has also been diagnosed. Here Aoife has the kind of teaching she needs to progress academically, while also being part of the larger school body for certain things.
“Her learning requires specific teaching and she is getting that, but she still has some peer interaction too, and that’s very important. I really believe that if you want a child to be normal you need them to be in a normal setting. If you lump a group of children with disabilities in together what they learn from each other is all their own behaviours. Putting these children into a special needs setting and segregating them is not always for the best, I believe. There’s a balance somewhere in between,” she says.
Attitudes to children with Down’s Syndrome and other learning disabilities have changed, the mother-of-three believes, but again the outlook of parents is key to furthering this change.
“Children like Aoife are unique, they stand out, and the important thing is to get them out there, to let them be seen. The day is gone when children were hidden away. She’s part of society, she’s a human being, she has her own rights and she should be partaking in whatever she wants. Wherever we go as a family, Aoife goes and that’s the way it’s always been.”
In a county of Mayo’s size, bringing together parents from the four corners and all the hamlets in between on a regular basis is impossible. So Mayo Down’s Syndrome is not a lobby group or a service provider, nor does it purport to be either. It is a support system for parents and families which offers moral support, a listening ear and, on a more practical level, activities and groups such as a Kids’ Club (which brings siblings together as well as children with disabilities), a swimming club, a drama group and a cookery club.
Frances wishes it could be more, but acknowledges the limiting factors, some of which disappoint her.
“The county is so big and so disjointed and parents are not very good for coming together. Really, parents have so many other difficulties and so much to cope with that they don’t have the time to come together and be militant and fight for services. And I think the powers that be know that. Already these families are in crisis and are struggling to carry on.”
But carry on they do, as Frances does.
“All we want is for Aoife to reach her potential and we have to keep encouraging her to do that. You do worry about the future and how independent Aoife will be. There are lots of things ahead; we’re just taking it one day at a time.”
And even on the cloudiest of those days, Frances Burke is sure to see a silver lining.