Armed with the facts and ready for anything

When Johan Verbruggen learned to tie his shoelaces, his parents brought him to a Manchester United match. It took him nine months to do it, but the reward at the end was getting to see his team.

The reason it took Johan so long to tie his shoelaces is that he has Erb's Palsy; his right arm is shorter and appears different. Erb's Palsy is caused by a difficult birth when a baby's shoulder is trapped behind its mother's pelvis and fragile nerves in the child's neck and arm become over-stretched or even torn.

The main difference between Johan and other children is that he has some major movement in his arm, but little movement in his hand. His arm was totally paralysed at birth, and, as his mother Mary, founder of the Erb's Palsy Association of Ireland, explains, he has regained major movement; however, even that is restrictive. Other than some very fine movement, his right hand isn't much good to him. Mary feels that Johan would have been right-handed, and so he has lost the use of his dominant arm.

Having little use of his dominant arm hasn't stopped Johan playing computer games, soccer, basketball, swimming or cycling, although he does them differently. "For years I drove myself mad, trying to work out how he would be able to do things. But I can't think like he can. I have two perfect arms. I can't come at it from his angle. So, I've never allowed him to say 'I can't' until he has tried."

Where losing the use of his dominant arm has caused problems is with learning to write, as he had to transfer over to using his left arm. And at one stage it caused him to stammer a bit, says Mary. "If he is right-handed, the left part of his brain would be dominant and now there's a struggle going on because you are forcing the right side to become dominant and the left side to be recessive and the brain doesn't like that, so he stammered for a while."

The problem cleared up once the dominance switched over. Basically, he is a right-handed person trying to write with his left, and while his writing isn't dreadful, he will never be the neatest writer, says Mary. "Writing can be difficult for him and you can notice that he will cramp up faster than another child would. You would often see him shaking his hand if he's got a lot of homework or an essay or something to do."

Johan is in sixth class and has had all his friends since he started school. They have all been very good to him. Although Johan has a slight vulnerability that a bully could move in on, bullying has been virtually non-existent. On the one occasion it did happen, Johan's mother went immediately to the teacher.

"He very cleverly waited for a day or two and gave a talk on families who have special members and how those families have to give special care. The teacher started with families who have a granny at home who has had a stroke and progressed on to families who have children with problems and said: 'For example, Johan'. He said it was really funny because one of the kids said: 'What's wrong with Johan?'"

Mary has discovered that the children who do best in the Erb Palsy group are the children whose parents speak about their condition very openly.

"I always encourage parents to give them the language - to say 'my shoulder got stuck behind my mother's pelvic bone'. If new kids ask Johan what has happened to his arm, he is so well equipped with the facts that he will deter a bully trying to pick on him.

Mary says Johan is not ashamed about his condition. "He is not shy about it. He'll give the medical explanation and go on about his business."

For further information on the Erb's Palsy Association or the condition, contact Mary Verbruggen (tel: (091) 552623). Or check out the website (www.erbspalsy.ie) or e-mail info@erbspalsy.ie