Carers Story, Jo

Hi my name is Jo and I am a mother to a 9 year old girl who has a diagnosis of Aspergers Syndrome, learning difficulties and complex needs. My daughter was diagnosed in year 1 of School after continued issues, mainly social interaction with her peers.

I was called every day after school regarding her behaviour. With the help of a very kind school teacher my  daughter was able to obtain her E.H.C.Plan, which we thought would be the answer to our prayers and this would allow us to place my daughter in a suitable school, that would manage her behaviour. This was not the case and to this day we have continued struggles to get her the help she needs.

As a carer of a child with additional needs be prepared to fight. You can see the help and support she needs but realise very quickly you have no choice but to manage the best you can with what you have available to you. Caring is twenty four hour and is always with you. You lose a lot of friends and family really don’t understand what life is really like and asking sometimes for a bit of support is like your asking for the world, when all you need is a few hours to refresh and start again.

Visiting people’s houses becomes an issue. You do not get invited anywhere. No one offers to take your other child if they are struggling to give them a break. It puts a major strain on your family and your marriage.

Seeking support from outside is a must, to be able to get through the difficult times and finding support from another parent’ in your situation helps you not to feel isolated.

A job is impossible and going out is a major task. You need to prepare and plan your whole day. I know without pushing for the support I have today my daughter would not be able to access the things available to her.

She is accessing a new school which deal with her behaviours and PA support  which is a major lifeline to any family. Nothing is straight forward. You have phone calls and appointments and you have limited time for yourself and your welfare.

You get through each day the best you can and find the strength from within to deal with what’s in front of you and in doing so hope that one day you will have an independent adult able to cope with the outside world when your no longer able to take care of them.

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