Teresa McDonough has four children, two of whom have learning disabilities; Darryl, 26, who attends Destined, holds down a full time job and is very close to fully independent living, while Claire, 24, will always need full-time care.

“Claire is pre-reading and pre-writing and is more severely disabled. Darryl is very independent – and I’m very conscious not to wrap him in cotton wool.”

Teresa and her ex-husband knew of the risks before they had children; there were pronounced hereditary factors in the wider family. But the genetic syndrome which directly affects her two children – and which is carried by her two other boys – has only recently been identified.

“It’s so new and rare, it could well be called the ‘The McDonough Syndrome,” she explains.

“There’s a fifty-fifty chance any of my children, or my boys’ children will have it.

“My husband and I were aware on one level what could happen – there were a number of uncles with learning disabilities on my husband’s side - but not to the extent that it did. Our first child, Declan was so healthy perfect blue eyes and dark hair. But with Darryl and Claire, we knew from early on there were difficulties. I was watching out for it – and you can generally tell by what they’re not doing.

“The first sign with Darryl was when the nurse did the so-called Hearing Test at six months. As part of this, she drops an object, and the child is expect to follow it with his eyes. But he didn’t do it. The visitor, I remember was very diplomatic about it – and allowed me to tell her that something was not right. Rather than the other way about.”

Teresa recalls being disappointed and sad for her son. But her own mother had been an instructor at the Adult Learning Centre (precursor of Maybrook Training Centre), so Teresa had more experience in the area than most.

“In saying that, being aware of learning disabilities and having them in your family are two completely different things,” she admits. “I remember looking around at my neighbours, at with their fully healthy children and wondering if I’d done something wrong.”

Teresa has nothing but praise, though, for the schooling her children received in Derry.

“Darryl was at Belmont from the ages of four to seventeen – and did very well there. He was taught by Mickey Dobbins, who is now head at Foyleview. And Tommy McCully and Nuala Begley, the new principal, were wonderful.

“His confidence grew enormously. He was always in the school concerts from the age of six. And he then took part in the Feiseanna. And as he got older he would have acted as compere at the school shows. When he got older, he was selected to give speeches as part of the Transition from School to Work project.

“He was bullied once or twice, but the school have a very good policy and stepped in immediately to deal with it.”

The McDonough’s found the health care system more difficult to negotiate, however

“Initially, I found the system very stressful,” recalls Teresa. “I have a very good care worker, Michael McLaughlin, who was always very supportive. But at the start, I didn’t want him near me – it was like an intrusion. There was a fear in me that they would take the children away. It was very scary. I used to get up in the middle of the night to clean the house in case somebody would come in to inspect it.”

On another occasion, when Claire had to go into hospital for a minor procedure, Teresa was astounded at the lack of provision for children with disabilities. “She was panicking, and the doctors didn’t know how to cope. They’re not trained for it. So, I ended up having to go into the theatre to hold her down.”

 

Because of Darryl and Claire’s differing needs, Teresa availed of the respite care system – and found it worked very well.

“It was great when they were younger. I needed it. I was on my own. And Claire was physically quite demanding, while there were behavioural issues with Darryl. But it worked so well for them. Darryl still visits the family he stayed with as a social event now.

“I refused to let them go to Stradreagh, however. After all, it’s a hospital. They don’t need to go there – there’s nothing physically wrong with them.”

Darryl was intent on getting a job after school and set about getting valuable work experience in the retail and catering sectors. But Teresa was disappointed that despite excellent references, he wasn’t recruited.

Then, however, after a couple of bitter disappointments, he got a placement at the City Hotel – after which he was offered a job as a trainee chef.

“The staff there are great with him – but they know he always gives a hundred percent. He works 16 to 20 hours a week, and now has his own bank account – and he gets the Disabled Tax Credit. His next target is to learn to drive.”

Outside work, Darryl enjoys the various Destined programmes, plays snooker with his brothers, is a core volunteer at a project for senior citizens (COSY) and he gives talks, with his mother, in primary schools on disability.

“If anything happened to me,” says Teresa, “I would like to think Darryl would be able to live independently. Claire would need a full-time carer. I wouldn’t want my other sons to have to take responsibility for her – though I’d like them to be near her.”

 

Teresa has been a long-time campaigner on the rights of the disabled and was a stalwart on the parents committee at Belmont for many years. She now works closely with Disability Awareness. She is very concerned at the current cutbacks in provisions and has lobbied at Stormont on the issue.

“The Trust hasn’t been able to increase bed provision for respite care since the mid-1990s, despite the rapidly growing numbers of adults with learning disabilities,” she explains.

“And the Executive has also announced cutbacks in funding, which has led, in certain cases, to condemned buildings being used for day care units. The Trust here is now looking to find premises for a unit – but they’re only prepared to spend £7000 a year.”

Another major issue for parents of children with learning disabilities is the right to work. “Claire should have the right to contribute in some way – in a way that’s she capable of. I don’t expect her to do something that would be beyond her. I myself have only 25percent vision – so wouldn’t apply for a job as a driver. But she should have the right to play a role in society.”

 

Darryl is immensely respected by his peers and, indeed, by his neighbours young and old. As yet, he hasn’t had a relationship.

“I’d love for him to meet a nice girl,” admits Teresa. “I sense a loneliness in him sometimes. With Claire, it used to break my heart that there would be no boyfriends and no wedding day. But then my other son assured me that if he ever gets married, Claire will be a bridesmaid – and we were all thrilled with that.

“In generally, there is an openness now about disability that wasn’t there when they were younger. They’re not treated like lepers, not hidden away. There’s still a certain amount of stigma – but there’s a lot less of the ‘Does he take sugar’ type of attitude.

“In saying that, a lot of people don’t like being branded with the ‘learning disability’ tag either. It still rankles with them.”

 

Teresa’s four-month-old grandson carries the ‘McDonough Syndrome’ but as yet manifests no signs of learning disabilities.  “My son and his partner knew the risks, but I’m delighted they had him. I don’t believe in abortion at all. It’s a life.”

 

(See also Darryl McDonough Interview)