Kim's Story
When you have children you know that your life is going to change but nothing could have prepared me for how my children would change my life.
When my eldest son, Dean, was born he faced a series of health problems and I worried that he was not hitting the usual milestones that you expect a baby to achieve. I always knew that he was ‘different’... The way he played was not the same as other children, he would line up his cars rather than race them around the floor. I had friends with autistic children and as I watched Dean, alarm bells starting to go off in my head. Although the process was underway for sometime before, he was not formally diagnosed with Autistic Syndrome Disorder until he was about 3.
In the meantime I had had Ben. He was such an easy baby , very content and able. He could not have been more different to Dean and I allowed myself to relax. Even though he was much younger he could do puzzles that Dean couldn’t manage. I had been given a gift of a perfectly ‘normal’ baby. But at around 16 months, things began to change, and I watched with a growing sense of unease as Ben began to change and the skills that he had learned so readily and easily just started to drift away. As it turned out, Ben and Dean were eventually diagnosed around about the same time.
I have no doubt that the breakdown of my marriage to the boy’s father was a direct result of their condition. The pressure was immense. I never feel that I am switched off from my responsibility for them – there’s always a part of me that is alert, waiting for a crisis and ready to spring into action if they need me. When you have a child with autism, it feels like you’ve been given a perfect child who’s then taken away from you. I sometimes think that it might be easier to have a child who had a condition that is diagnosed at birth – that way you deal with it right from the word go. With my boys, it has felt like a cruel twist of fate – especially having both of them with it! But, you know, if I could wave a magic wand and change them – I wouldn’t - because they wouldn’t be them and, just like any other mother, I love every bit of them and just want the best that I can possibly get for them so they can have the best that life can offer.
Looking after Ben is both physically and mentally exhausting. Ben has severe epilepsy alongside his ASD and even a simple trip to Tesco is like a military operation. I don’t feel that I can go very far without extensive planning and if I have Ben with me I time my journeys back to the RUH so I know that I can get him there if I need to. There’s always a back-up plan – there has to be. Christmas shopping is a real challenge!
The full extent of the implications for my life really became clear to me when the boys were 6 and 8. Up until then, my life was completely tied up with them but so were other mothers that I saw. The life of a mother of young children IS hectic. What I started to understand was that, whilst other mother’s children were becoming less dependent – this was not going to be the case for me. My life as their carer will continue to be a 24/7 role for the foreseeable future.
But what can you do? You either go “Oh woe is me” or you acknowledge that it’s not great and just get on with it.
It probably seems strange but I worry more about Dean’s future. Because Ben’s problems are so great he WILL be taken care of whereas Dean could slip through the cracks...... I try not to think about the future and deliberately stop myself if my mind starts to wander there. I have a two year block strategy that I use to keep it under control – as long as I can see that the next two years are OK I can cope!
A lot of positives have come out of this for me. I now work with disabled children and was amazed to receive an award for my voluntary contributions a couple of years ago. It meant a lot to me...
I do struggle a bit with my work situation. I’d like to be able to work more hours and to work within a school but that’s not going to happen because I have to be here for the boys.
Ben’s really challenging and can’t be left with anyone who doesn’t know him very well and has the skills to handle both his behaviour and his medical condition. That’s a pretty small number of people.
The help that I get from Crossroads is really valuable. Lucy came into our lives about three and a half years ago and, to be honest, she didn’t know much about Ben’s condition. But we’ve worked together and we are now in a position where (as long as Ben is in a good space) she can take him out on her own and they go out for a pizza or go swimming or something. She comes every Friday evening from 4.30 – 7.30 and it just gives me a bit of breathing space which I normally use to spend some quality 1:1 time with his brother Dean.
Lucy will also accompany us on family trips out which gives me an extra pair of eyes and hands meaning that we can do things like go to the fair and she’ll take them on the dodgems and go on fast rides. She’s really good fun and I plan our trips around the times when I’m able to book her for a six hour session.
When the boys both go to stay at their Dad’s I have a chance to be with my partner, Vince, but I also enjoy going out shopping, meeting up with my mates for lunch or just chilling out with a good book. That doesn’t happen very often though.
At the end of the day, nothing is ever the way you thought it would be. I used to think that what has happened to me only happens to other people. As a Mum you sign an imaginary contract to always do your best for your kids and in that way, I’m just like any other Mum.
« Back to Case Studies | Posted on 01/01/1970