Govt cuts add to Kells family's worries over son

To outward appearances, David Kirwan is a normal 10-year-old boy. He greets people with a ready smile, is chatty, has plenty of questions to ask, and has a loving relationship with his parents and two younger brothers. Yet, despite all that, he very often lives in an isolated world of his own, finds it hard to socialise with other children and is a constant worry to his mother, Dorothy, and father, Simon. Added to this is their anxiety that government cutbacks in services to children like David will affect his future in a dramatic way and leave more him more isolated. At their home in Kells last week, they outlined their difficulty in accessing services and getting information on what the future may hold for him. Asperger's syndrome is an autism spectrum disorder that is characterised by significant difficulties in social interaction along with restrictive and repetitive problems of behaviour and interests. It differs from other autism spectrum disorders by its presentation of linguistic and cognitive development. Several thousands people in Ireland have the Asperger condition, with more men than women affected. David was the Kirwans' first child and it is obvious that they shower him, and their two other children Conor (7) and Adam (4), with affection. His condition was first noticed at school when he failed to bond with other children or play with them in the school yard. It came as a shock to his parents when a psychologist spoke to them. "It was presumed that we knew what David's problem was," said Dorothy, "but we didn't. The first thing we had to do was look for a diagnosis. That's when the problems started. The HSE told us there was a waiting list and it might take up to 18 months to have him diagnosed." Simon, a bus driver, and Dorothy, a homemaker, decided they would go privately to Professor Michael Fitzgerald, an expert in this area. By 2008, he had come up with the diagnosis that David was on the autism spectrum and had mild dyspraxia. Because he was their first child, they had no-one to compare him with. They found it difficult to understand his condition. For instance, at a very young age - his parents believe he was about two - he was able to recognise individual car badges in advertisements in a Golden Pages directory, and call out their names to his parents. However, he had no road sense and, on one occasion, cycled out in front of a car and was knocked down. He was fortunate in not being seriously hurt. Although he has a similar vocabulary and use of language as an adult, his isolation becomes obvious at times. His family have to work hard at getting him involved. He has two particular friends in his estate in Kells who are friendly with and protective of him. Accessing information about Asperger's Syndrome has been difficult. The Kirwans had a librarian friend who pointed them towards books on the subject and, once David's condition had been diagnosed, the HSE was also helpful. Disruption However, the Kirwans dread September because it inevitably means disruption for David as he changes class. Children like him are unable to rationalise changes like these and they may upset him, causing difficulty in sleeping at home and further isolation at school. Up to now, he was entitled to 12.5 hours a week services from a special needs assistant (SNA). However, under new government restrictions on the service, these hours have been reduced to 10.5 and will be allocated to the school as a whole and not to any individual child. Dorothy Kirwan has been fighting for a domiciliary allowance so that she can care properly for her child. However, the administration of the service has been transferred from the HSE to the Department of Social Welfare. She has been turned down once - "they said he wasn't eligible medically" - and is using the services of Meath West TD Damien English to help her with an upcoming oral appeal. The 'officialese' in the notice of rejection rankles with the Kirwans. It said: "Applicant's child is not regarded as requiring care and attention substantially in excess of that required by a child of the same age and accordingly does not satisfy the medical condition for receipt of domiciliary care allowance." The couple say that decision was made by officials who read papers on the case but did not see or examine David. Mrs Kirwan has qualified in specialised care for her son in a FETAC course. She now hopes that the bureaucratic decision handed out to the family will be overturned and she has the backing of The Carers' Association in putting forward her case.