In June 1994 following another test of her hearing, due to the fact that she didn’t answer her name or respond to verbal communication, our daughter was referred to the Children’s Assessment Centre. The doctor gave her a duplo family and furniture to play with but instead of reproducing a family scene she lined them up in a row. Following a deep intake of breadth the doctor said ‘Do you know anything about Autism’? She was shortly diagnosed with Severe Learning Difficulties and Autism.
The years since then have been a roller coaster of both emotions and physical life changes as we have tried to help her cope with a world her condition doesn’t understand – everywhere she goes and everyone she meets simply aren’t the same every time she visits. In the early years especially we had to be prepared to leave anywhere we went at a moments’ notice. When she was about 10 there was an instance in Cornwall when we sat at the same table in the same holiday pub as we had done a year earlier: all was going well until she had what society calls a tantrum and we had to leave abruptly about 10 minutes after arriving, despite the drinks on the table, the setup pool table complete with expectant son, and the waiting food order. The only apparent reason was that the same jigsaw puzzle as the previous year wasn’t in her bag. There are lots of bad things about autism but in our experience it has a very, very good memory.
By 2005 her ability to cope with the random changeable nature of everyday life had improved greatly. We’d been told that she would probably never get verbal communication, she still only repeats odd words, but she had part adopted picture exchange as her communication method so we did have a way of explaining what the next sequence of events would be. We were coping with the present but extremely concerned about the future as she needs help doing most things, needs constant supervision outside of the house and will never be able to work or look after herself. We will only be able to look after her for so long but even now her autistic learned behaviour of life in our house and a parents natural instincts to protect, are preventing her from realizing her potential – she does far more when with her beautiful respite lady than with us – I suppose this is one of the few normal teenage traits she has ‘why should I bother, mum will do it’.
That year we had a visit from a lady from All St Saints church in Bath who wanted to take our daughter to Lourdes as part of a group of the Handicap Children’s Pilgimage Trust, another fabulous organization. Despite our reservations she went and had a great time by all accounts. On return she joined their Christian special needs youth club and from there we met more parents and children with challenging lives and needs, all connected by faith and with the same hopes and fears. By 2009 we had been meeting once a month and the LIFE Project was born.
In this time we have been strengthened by the great faith of the combined group, we feel comfortable with and draw strength from people who understand the ups and downs, pressures and pleasures, restrictions and great possibilities, of being given the responsibility of nurturing a disabled child. Our feeling that our daughter is a gift to us from God, a precious gift to be nurtured, has increased since becoming part of the group, we see this in the other young people too and we now have greater hope for a secure future for her.