The Down syndrome journey

For most pregnant women, the birth of a Down (or Down's) syndrome baby is their worst nightmare come true. Many mothers of such children admit, albeit reluctantly,

to having wished initially that their baby would die. Then, slowly, they and their families adapt to the situation and begin a whole new journey. This may involve living with a child whose special needs include heart surgery before the age of one, severe to moderate hearing problems, sight impairment, thyroid dysfunction, reduced growth, poor muscle tone and global developmental delay.

"I was severely traumatised by her birth," says Elizabeth Murray (47), the mother of Eleanor, a seven-year-old with Down syndrome. Eleanor was seriously ill when she was young. She spent her first 12 days in intensive care with feeding problems, got pneumonia when she was three weeks old and spent the following five-and-a-half weeks in Our Lady's Hospital for Sick Children in Crumlin, Dublin. "Her early illness became a great rallying point. The fact that we nearly lost her made her seem like just a little girl who was very sick and survived. The fact that she had Down syndrome became of lesser importance," says Tom Murray, Eleanor's father and the president of Down Syndrome Ireland. Eleanor's health is now good. So far, she has had two sets of grommets put in her ears to deal with fluctuating hearing difficulties. She is also prone to upper respiratory infections, but the heart murmur she was born with corrected itself early on. Like many parents of children with Down syndrome, the Murrays - who have two older sons, Simon (23) and Paul (20) - didn't know anyone with the condition when Eleanor was born.

"Yes, there is a grieving process," says Elizabeth. Down Syndrome Ireland provides information packs to all maternity hospitals, which the staff give to parents of babies born with the condition. However, it is usually between six months and a year before parents make contact with their local branch of the group. Some never do. The Murray family embarked on an intensive programme of early stimulation for Eleanor when she was six months old.

"We realised that the first seven years were crucial for her development," says Elizabeth. A primary school teacher herself, Elizabeth taught Eleanor sign-language and used flash cards to teach her how to read before she started school. "All the things you take for granted when a child is not delayed, you have to repeat over and over again," she explains. Eleanor also benefited from the home visits of a teacher, employed by the local branch of Down Syndrome Ireland, and she still receives some physiotherapy and speech therapy from the local health board. But the main inspiration for the Murray family came from their visits to the Sarah Duffen Centre, a Down syndrome educational trust in Portsmouth, England. There is no such educational trust in Ireland. Eleanor attended Montessori school for three years before starting primary school at the age of six. She is now in senior infants at St Mary's Primary School, Trim, Co Meath, where she has her own full-time classroom assistant. A confident, trendy child, she enthuses to me about her new jeep, a battery-operated mini off-roader which she drives up and down the avenue to her parents' house. "Basically, our whole lives revolve around her," says Tom. "The biggest impact on us is the time commitment. You have to re-orient your life. What was previously down-time at home is now taken up with Eleanor."

The Murrays' experience is far from typical. Many families still rely on the limited services provided by their local health boards, which often consist of some sessions of physiotherapy and speech therapy before the child begins school. "And there are children who have never seen a speech therapist at the age of seven," says Tom.

The current severe shortage of speech therapists in Ireland is an incalculable loss for Down syndrome children. "There has been a huge increase in the knowledge of what children with Down syndrome can learn. For instance, we now realise that children with Down syndrome have a fantastic capacity to read through wholeword recognition at an early stage and that sign-language can help them enormously with communication where there is language delay," explains Tom.

He readily admits that in spite of the excellent intervention Eleanor receives, he fears for her future. "In some ways, I would like to freeze Eleanor at the stage she is now, where she is fully integrated into school and community and there are no pressures on her," he says. "Because the older she gets, the more she will begin to realise that she is different, and the system will treat her differently."

DEIRDRE Hennigan is the mother of six children aged between 31 and 15. Aisling (17), who has Down syndrome, is the fifth child in the family and last year successfully completed four subjects (art, woodwork, home economics and social studies) in her Junior Cert. She is now a transition student at St Tiernan's Community School in Balally, Dublin.

Aisling's success is another reminder of the capabilities of people with Down syndrome, people who in the past were often deemed unteachable. However, her integration into mainstream education was thanks mainly to her mother, who fought for support services every step of the way.

"The Department of Education didn't want to know us. Doors were shut in our faces. We were seen to be a group of hysterical women who refused to accept that our children were handicapped," says Deirdre, remembering the many battles she fought to get access to a resource teacher for Aisling at primary school. Times have changed, however, and resource teachers and classroom assistants are now available - albeit still on a limited basis in some cases - to children with Down syndrome.

Other issues preoccupy parents as the children become young adults, such as finding suitable employment for them, ensuring they have meaningful social lives and maximising their potential for independent living. Social isolation is an aspect which particularly worries Deirdre. "Aisling had a great group of friends in primary school, but none of them went to the same secondary school as she did," she says. "Now, the gap is widening all the time with friends, and nobody from her school phones her up or invites her to parties. She does have her Special Olympics club, the Blackrock Flyers, which was set up by parents who saw the need for such an outlet for their

children." Every parent's usual fears for the safety of their teenagers are exacerbated when a teenager has Down syndrome. "Aisling has led a very sheltered life and I fear that she could be taken advantage of," says Deirdre. "Although she is 17, she is like a 13-year-old without that streetwise bit. It took us a long time to break her habit of throwing her arms around absolute strangers, and I hated having to do it. But we have successfully trained her not to talk to strangers. "I think it's important to move away from treating people with Down syndrome as adult children with ankle socks and slides in their hair." Employment opportunities are another area of concern. "There are an awful lot of jobs which people like Aisling could be trained to do. Loyalty is a strong characteristic of people with Down syndrome," argues Deirdre. "They are also so much better educated now than 20 years ago. But my fear is that people have become incredibly selfish. Feargal Quinn is one of the few employers I know who makes an effort to employ people with Down syndrome." As their life expectancy increases and it becomes usual for them to outlive their parents, the housing needs of people with Down syndrome will be an issue of increasing importance.

"There is going to be a huge problem with accommodation needs for people with Down syndrome in 15 years' time," predicts Deirdre. Currently, there isn't any State scheme to provide housing for people with Down syndrome. This is a campaigning issue for Down Syndrome Ireland.

"A number of branches have started initiatives of their own," says Tom Murray. "The Donegal branch, for instance, has set up a housing trust to purchase houses for people with Down syndrome. What we would wish to happen is that local authority grants would become available for such houses and the health boards would provide the professional services required." Paul Kennedy (35), who has Down syndrome, works a fourday week in a workshop run by Cheeverstown House, a services centre for people with mental handicaps in Templeogue, Dublin. He also works one day a week in a filling station and spends a lot of the rest of his free time in a local barber's shop. He lives with his parents, Joe (65) and Chrissie (64) Kennedy, in Walkinstown, Dublin. Paul is the oldest of four adult children.

While it is easy to see what huge strides have been made in terms of integrated education since Paul attended a special school, the Kennedy family blazed a trail of another kind by encouraging their son to socialise from an early age. "When Paul was young, people were only beginning to bring children with Down syndrome out of their homes. Before that, through ignorance, people thought such children should be kept in," says Chrissie. "We were told by a doctor when Paul was young that we need not worry because Paul will not live longer than you will. That is completely wrong now," adds Joe. The Kennedys have from time to time availed of respite care facilities at Cheeverstown House for Paul. The family's situation is altogether more poignant because Chrissie has suffered from Parkinson's disease for the last 18 years. As her full-time carer, Joe says he feels sometimes that he is neglecting Paul. "I'm always threatening that I will make a will, but I keep putting it off," he says. "I am not worried about Paul's future because my daughters will look after him. He is no trouble. But you do assume that everyone is thinking the way you do."

Down Syndrome Ireland can be contacted on tel: 01-8730999. See also dsi.eircom.net

The Sarah Duffen Centre, the Down syndrome educational trust, can be contacted on tel: 0044-(0)239-2824261. Also: www.downsed.org

What Do I Do Now? is a booklet to assist parents on hearing that their child has special needs. Contact the customer service department (tel: 01-635- 4000) at the Department of Health and Children.