Written by Jim
Martin, our youngest child, was diagnosed in Edinburgh with Fragile X Syndrome when he was nine years old, but it was another eight years before we had any contact with another family in the same situation. This contact was achieved by reading an article in a national newspaper in 1990, concerning Lesley Walker and the formation of the Fragile X Society. Lesley was passionate about raising the awareness of Fragile X Syndrome by creating a Society of family members, to enable parents to gain access to all the information available, and to exchange their personal experiences with each other.
Martin attended a Special School in Edinburgh until he was seventeen, and then had two years at a college, in a class for pupils with severe learning difficulties. When he finished college, one of the teachers arranged for him to do part time therapeutic work at a Petrol Station in Edinburgh. This improved his social skills considerably and he is still attending the same workplace after twenty three years. He now has support workers who go out with him on the days that he is not working.
Until May of this year, Martin had always stayed with us, perfectly happy with his own room and TV. However, we realised we had to prepare for the future, so we arranged for him to move to a flat close to our home to establish if he could manage on his own. Well, he really loves having his own flat, and we shall be seeking more help from Social Services to ensure there is always someone available if any problems arise.
That brings us up to date with Martin’s development, but it is very important to acknowledge the help and information we received as parents from the Society, through attending the Scottish Conferences in Stirling and the National Conferences in Birmingham, and receiving the Society Newsletter with lots of interesting articles from Health experts and family members. It has been a pleasure to meet up with other parents and share our experiences of bringing up a child with Fragile X Syndrome.