Saturday 23 March 2019

CASE STUDYChildren as unpredictable as the weatherFor years the McDermotts knew there was something wrong with two of their children. They tell John Masterson how eventual diagnosis brought them relief

JOSEPHINE McDermott is one of those people who leave you wondering where they get their energy and determination.

Her husband, Hubert, sits nearby, quietly offering an opinion now and again, while Josephine gives chapter and verse on the past, present and the future. She is a woman on a mission. And who could blame her?

After a decade of being told the troublesome behaviour of some of their children was 'her fault', at long last she knows she is in the clear. And by God she doesn't want anyone else to follow the path she was forced to tread.

"Aisling is 14½ now, and I knew from when she was born that something was wrong. She never cried, and then it was like that film V where there is an alien that lets out a ferocious screech! Well, that was Aisling. It was like a wail and a screech and then she would go calm and peaceful and look like she was laid out. She was confused, like as if she didn't know who she was. At six months, she couldn't sit up. You would have to wedge her in between two cushions. She had no baby words. I sometimes think if we had gone away for the first few years she wouldn't have noticed."

Aisling got the MMR vaccine aged around 14 months, and Josephine is convinced there was a change after that. She began to talk and became hyperactive. "She was into everything. I was constantly after her. Mind you, it was great," she adds, laughing, and then tells me of the chaos of getting the family together for the photograph earlier that afternoon. "And I said to the photographer that every day is like this for me, and I don't think he could believe it."

As we chat, their third child, 10-year-old Robert is in and out of the room constantly and over to Hubert for a hug.

Pamela, 13, was born in between Aisling and Robert and had a blissfully ordinary childhood, but Josephine and Hubert can hardly remember her growing up. "She was just thrown on the dump by comparison," Josephine explains. "Life just centred around Aisling, and then Robert. And at the same time people thought it was me who was the problem."

It was with Robert that the diagnosis ADHD, or Attention Deficit Hyperactive Disorder, first came into the McDermotts' lives. At long last they knew what they were dealing with, and that it was not something they were responsible for, but very much something they would have to live with.

"Robert is a typical hyperactive. I knew as soon as he got on his feet. He was Billy the Whizz, and he is still the same. Robert just can't sit down." A first glance at this affectionate youngster makes this hard to credit but half an hour later I am in no doubt about what she means. Josephine tells me about his time in the local Gaelscoil where, as Roibeard, he drove the muinteoir "insane". One of the other pupils told her gleefully the story of the day the muinteoir had a headache and asked the class to sit quietly for a while. "Sure, Robert just went on talking. He couldn't sit still for two seconds, that Jumping Johnny."

The real agony for Josephine has been the endless trips to the Health Boards seeing doctors, social workers and psychologists without any solution to her problems.

"The blame was put on me. I used to go to these case conferences with me facing about six of them. I christened them 'The Firing Squad'. I always came out feeling worse. I spent more than ten years accusing myself."

Finally, in 1999, Aisling was seen by Prof Michael Fitzgerald, and his diagnosis was that Aisling had a condition knows as Aspergers Syndrome, possibly with secondary ADHD. For Josephine, this was the light at the end of the tunnel. She was so "relieved that somebody knew what I was going through. It is like a high functioning level of autism, and she is capable of learning with appropriate help. If only we had known that from day one".

Around the same time, Robert was seen in Temple Street children's hospital and diagnosed with ADHD. He has been taking the recommended drug, Ritalin, since then. "Ritalin was the making of him. I have never regretted going down that road with him. We got help early and there is hope. But it is not perfect, and never will be."

The stories about Aisling and Robert have a very familiar ring to Dr William Wilkinson, an American educational psychologist who, having trained at the prestigious Johns Hopkins University in Maryland, moved to Galway where he specialises in the assessment and treatment of children with learning and behavioural problems. His recently-published book on ADHD is full of practical advice and aims to raise the profile of ADHD, which he believes often goes undiagnosed for far too long.

"In America, it is like the 'common cold' of why people bring children to child-guidance clinics, it's part of mainstream thinking. Parents and teachers are more on the

'I adore them all. I wouldn't trade them for the world'

look-out for it. There is no known cause for ADHD, but scientists are working on it, and it looks like one will be found in the brain chemicals and genetics. It's very important to know that no matter how

good the parenting is, even under the most optimal conditions, children will have this disorder."

Typically, parents will notice something unusual about the child early on. Some parents even say they noticed it in utero. The infant may be very wakeful and very

active and climb a lot in the cot.

"Some of these can be nightmare children. I've heard incredible stories about the child getting out and walking two or three miles away. Children cross boundaries without even noticing. Like climbing a 30-foot tree above the house," he explains with the air of a man who knows what parents and teachers have to deal with.

And this leads to the cycle where the child is continuously being told to "stop that" and "don't do that". This is often the only attention the child gets, and William Wilkinson stresses the importance of catching the child being good and giving attention for that behaviour instead.

HE BELIEVES that getting treatment to the child early is important. In many cases, this may include the drug Ritalin which "helps bring them down so that they can begin to listen and develop skills. Kids with ADHD find it very difficult to get organised enough to have any agenda."

Without treatment, the impulsive behaviour they display can get them into trouble in their teens. The tendency to immediate gratification can lead to substance abuse and sexual behaviour at an early age. But perhaps the most important effect of treatment is that it prevents the child losing confidence due to repeated failure.

"If you don't treat children they become very despondent because they are not succeeding - despite being intelligent and despite people telling them that 'if you just concentrate harder . . .' - which is like telling a child with cerebral palsy 'if you could just get up and start walking . . .'

"But because ADHD is not a physical disorder we don't tend to look at it like that. It is very frustrating to see them at 16 or 17 and they are at wits' end and the parents are at their wits' end and the teachers have been saying for years and years "If only Seamus would try harder . . ."

This is all music to Josephine McDermott's ears, music she wishes she had heard years ago. She had always known that while her children were different, they were intelligent. And like all children, they can be the source of great laughs.

Aisling "doesn't give a damn what she says to anybody. She always has an answer. Never short of a word now."

"And Robert can be very creative. I spent two hours trying to fix a spring on the typewriter a while ago and gave up and went downstairs. Next thing, I hear it working. Robert had fixed it, and showed me how. I've learned that if he says to 'do it this way' it pays to listen."

It has been a life that would drive any parent to distraction, but Josephine makes it even busier now by running a local support group in Cavan for others going through the same problems. She is a bit of a human dynamo.

"I spend my entire life running from one end of the town to the other trying to sort out my kids. I am on the go 24 hours a day. Aisling is still as unpredictable as the weather. But I adore them all. I wouldn't trade them for the world."

'Straight Talk about ADHD: A Guide to Attention Deficit Hyperactivity Disorder for Irish Parents and Professionals' by William K Wilkinson, The Collins Press, costs ?15

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