Karina Has Down Syndrome

'We mourn the death of the child we had assumed I had given birth to, yet dearly love the baby we have. We want our child, but don't want her to have Down Syndrome...'

Since their initial shock at their daughter's disability, Karina's parents have experienced the challenges and joys of raising a child with special needs. Gun Dolva and Rodney Potter have taken advantage of available services and programmes - and their own imaginations - to devise stimulating activities to assist her to develop to her full potential. They aim to provide her with every opportunity to fully participate in the community.

This is the account of Karina's first six years, as told to Cheryl Rogers. Karina Has Down Syndrome is a valuable resource for the families of Down Syndrome children, teachers and disability service workers.

Down Syndrome is the single most common cause of intellectual disability, and so it is important that we all know more about this syndrome. Gun, Karina’s mother, has written this personal account, together with Cheryl Rogers, of day-to-day family life which gives us all an insight into some of the difficulties, and some of the solutions.

From being told the news, to wondering how to tell friends and family, the authors convey just what those first few days must have been like. Gun says ‘... the hardest thing for me to overcome is all the accumulated preconceptions about handicapped children’ and many, many parents will have experienced just that.

There is a warning to other parents not to keep a ‘stiff upper lip’ attitude, because many parents believe - and indeed are told - that there are other children with more severe problems. But get all the assistance you can from day one: the help on offer listed in this book seems very comprehensive, but remember this family lives in Australia. I was especially taken by the mention of a foundation which is looking for a host family to take Karina for one weekend each month, so that her parents can give more time to Karina’s brother and sister. This foundation also offers sibling workshops.

As well as a day-to-day diary of progress in those early years, it will be all too familiar for many parents to read how, once Karina is on the move, they have to become hardened to questioning looks from people. Dealing with a typical toddler is hard enough, but a screaming four- or five-year old is a lot harder. Parents of a child with ADHD will certainly know what this can be like. Rodney, Karina’s Dad, gives his point of view too, and talks of the pain of seeing his child used as the butt of jokes from other children.