COMMUNITY CARE / The vulnerable people who find themselves facing a future of change: The disabled child: Families fear burden will fall on them
Monday 29 March 1993
With her husband, Ingvar, working long hours as a doctor, she has been the main carer for their oldest son, Steinar, who at 16 is severely disabled by hydrocephalus, an accumulation of fluid on his brain at birth. It has left him with a shuffling gait, epilepsy, an inability to communicate, prone to ill-health and totally dependent upon his family. He will lash out at people, biting, hitting and pulling hair.
His constant demands have been at the expense of Mr and Mrs Bjarn ason's two other children, Ingi, 14, and Alex, 9. Through the years of worry and stress involved in the constant care of Steinar, the Bjarnasons do not know how they have managed to cope and stay together. Only now as Steinar's behaviour becomes more difficult are the family considering residential care.
Alarmed when one doctor suggested controlling Steinar with tranquillising drugs, they are hoping he can take up a place in a New Forest school - a long way from their home in west London - which specialises in care for 'challenging' children.
Mrs Bjarnason is taking a master's degree in gender and social policy at Bristol University. She said there was nothing to help Steinar have a social life outside school or the family, as he was too old for the Mencap play centre. The Bjarnasons have managed to get care for Steinar for a long weekend each fortnight and for holidays. 'But I know that is exceptional. We know how to get the best out of the system. But what is awful is that you have to trash your child, put the emphasis on his negative traits, in order to get services.'
They also know that when Steinar reaches 19 and no longer qualifies for 'education' he will have to move from the school and that suitable residential placements will not be easy to find.
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