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The life of a special needs carer in support of Carers Week 2014

I think most parents would agree it is a tiring task raising children when they are young, but as they grow and develop their own personalities and independency, the apron strings can slowly be released. This enables you to start to take your own life back and enjoy the periods of freedom to relax and enjoy life to the full.

It can be a very different story if you are the parent of a young adult who is disabled with learning difficulties as the role of parent tends to be outweighed by being a carer. Yes we all have to do things for our children when they are young like bath time, helping with dressing, cutting up food the list is endless but would you still be expecting to do all of that when your child is nearly 20. Practical household tasks, personal care, emotional and financial support are all part of being a carer to a young adult.

I always wanted to be a parent, to enjoy the happiness, laughter and fun filled days we all so easily associate with this important role. However being told 19 years ago that our daughter was disabled changed our lives forever and this misty eyed vision of being a perfect parent was shattered in an instance, or was it?

Me & Liv
It took me a long time to come to terms with my daughter’s disabilities not that I let anyone know about it, stiff upper lip and all that malarkey ashamed to show that I was human, I longed for some normality in my family. What is ‘normal’?; I don’t believe anything in life is ‘perfect’ and it has taken me a long time to understand that life is a constant test; to see how strong we are and this is the same about being a parent – in my case a carer.

You may think ‘special needs kids are so loving’ which you are correct and you may well think it is petty to feel like this because I am still her parent, but it doesn’t diminish the amount of pride I have for what my daughter has achieved in her short life. We had endless appointments with various clinics, home therapy and battles with education authorities and was any of this expected when I took on the role of a parent, “No”. Would I have changed it if given a chance, “No” as being my daughters carer has been the most rewarding time of my life.

Sometimes for my sanity it has been a big help being able to make contact with other carers as we all have something in common, either therapy; behaviour difficulties; toileting issues and the list could go on, but in fact being a carer is unique to your own set of circumstances. I do wonder most days, is this what the rest of my life is about and despite me knowing my daughters unique thought process and the associated challenges, with the honour of caring for her comes the solitude of the role.

There are days and weeks when I can be very quiet especially when times are hard. It is not always so easy to see the good things as health and development issues take president. I may be quiet in the office; not take part in conversations and sometimes seem withdrawn, but it doesn’t mean I don’t want to share our life with others.

Talking can be difficult when you are a carer as you always seem to be spoken to by others and without having common ground to speak about, sometimes it is easier to not say anything. However, I have learnt that it is ok not to talk sometimes, as we need time to digest information; be able to see a way forward and have time for ourselves. Talking though can be a great healer and I have managed to come to terms with my daughters disabilities because of our great freedom of speech, without this I am sure my life would be very different.

Being a carer can be a thankless job as it is very easy for government departments, friends and even family to forget what you have to do on a daily basis. Carers don’t choose to become carers, it just happens and you have to get on with it. If I didn’t do it, who would and what would happen to our daughter? No two caring situations are the same and carers come from a diversity of lifestyles and circumstances. There are no rules about who can become a carer or about what a carer is expected to do. For these reasons, caring for someone can be confusing, exhausting and frightening at times.

Yes I can be grumpy, fed up and not always the life & soul of the party and yes life as a carer irritates me at times, but would I change my life, not at all! My daughter has been the most inspiring thing that has happened to me and some days I can’t believe how lucky I am to have her. She’s loving, funny and beautiful and what she has accomplished in her short life is down to her sheer determination and she has proven that having a disability, doesn’t have to hold you down.

Being a carer is tiring, exhausting at times, frustrating and thankless but she has also enriched my life more than I could ever have imagined as a normal parent and that in itself is the best reward I could ask for.

For more information about being a carer visit the Carers Trust website and take a moment to think about how you may cope if you suddenly had to become a carer.