3. Parent Carer: Carer for young son with Asperger's and young son who is autistic
I care for my two sons, James who is thirteen, he has Asperger's and Ryan is eight, he is Autistic. My mother also has many health issues and I share her care with other members of my family. I always knew there was something a bit different about James. When I took him to our GP I was told that I was an over protective mother. He went to a mainstream school in primary one, in primary two and three he attended a language unit due to problems with his speech. He talked really quickly. He returned to mainstream school in primary four. I encountered one problem after another there. James is a highly emotional child. Staff couldn't cope with him, often he would be sent out to the corridor crying. I got the impression they didn't want him there. I decided to change to another school.
The staff there worked really well with James, he was a lot happier, therefore so was I. Ryan went to nursery, he didn't speak. The nursery staff were excellent. It took them a year to make progress with him from sitting in a corner on his own to participating in activities with the other children. They even managed to get him to play a part in the Christmas play. He was diagnosed when he was four. As a result of the experience from Ryan's situation, James benefited. He was diagnosed shortly afterwards. Although there are similarities between the boys there are also extreme differences. I have to make five different sets of plans before I do anything. My children have to be supervised at all times. Ryan can't be left in a room on his own. He tried to cook me breakfast for mother's day and before I knew what he was doing the flames were leaping out of the frying pan. On another occasion, at a birthday party, he used a kitchen knife to burst balloons. He has no sense of danger. The boys attend various clubs. They have to be able to function in two worlds, with children who are the same as they are, and also with other children.
The thing with autism is, there's no treatment for it. When you are given the diagnosis, although it is a relief, medically there's nothing doctors can do. Often if people don't see a physical disability it doesn't exist. What has helped me most is speaking to other parents. I have made many friends through the children. We share experiences and give each other advice on how to deal with things. I do manage to have a social life but find it easier to go out with other parent carer friends as they understand when I have to let them down and vice versa. Parents are sometimes wary of telling a social worker about how they feel but will be happy to tell another parent.
I am involved in the ICCAN Group (Information for Carers of Children with Additional Needs). It feels great being able to help other parents in the same situation and it is good for my self esteem. I also attend the Local Carers Network where I can speak to other carers and they can also learn from me. I have picked up some useful information there, in particular legal issues regarding guardianship.
Over the years I have learned to follow my own instincts, decide what I want for my children and fight for it. At times I likened myself to Coronation Street's battleaxe Ena Sharples! This year, James was offered a place at High School. There was only one place available and he got it. I couldn't believe it, for once we were offered something without having to fight for it. My life is unpredictable but never boring. I try not to expect too much or look for every milestone in the boys' lives. I worry about their future when they become adults because that's a whole new ball game.