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Anna Kennedy needs you to complete this very important survey: Who will look after my sons when I am no longer around?
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How Will They Know?
An article by one of our charity supporters –  Jane Fieldson

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How will they know, those that are left to take care of my beautiful daughter? How will they know what lasagne she likes. Will they know that when her voice becomes high pitch, she is having an anxiety attack?

Will they know that she does not like to be alone EVER? Will she be alone? Will they be patient with her and reassure her when she panics about a meteorite hitting the earth and then talks about it non-stop for weeks.

How can they know that she loves to be hugged from behind and not face forwards? Will they laugh when she acts out her favourite Anime DVD? Will they love her singing as much as I do? Who Is Going to Look After Her When I Am Gone?

Every day, I ask these questions, even more so when I realised the extent of her difficulties and the mountains I continue to climb. Every day I look for answers and the truth are, there is not anybody who can meet her complex needs like I can, much the same as every parent/care.

There is a difference however, Charlotte will never live by herself, have a family, drive a car, all of the rites of passage were cruelly ripped away for her.  I am her mum and I know every single inch of my daughter inside out.

That sick feeling in the bottom of my stomach that I wake with most mornings when I consider what life will be like when I am not there to protect her from the experiences that I have fought so hard to hide from her. Who do I trust?

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The guilt I feel when my other daughter says, “don’t worry mum she will never be on her own, I will look after her”.

She has a family of her own, I cannot expect her to take on such a huge undertaking even though she is her sister.

The guilt I feel when I realised that, if I am honest, my daughter does not really have a choice does she… Charlotte’s brother too, he is going to have to share the load.

In my professional capacity I am a children/young people’s bereavement counsellor and have supported families who have left behind an autistic child/young person. I know the barriers and the lack of support and care only too well.

My experiences to date as a mother of a daughter with autism do not fill me with hope.

I had hoped that with time things would improve and I am filled with horror when I listen to and hear stories of young adults with autism who have been left to fend for themselves, lost in a system that does not care, vulnerable and unprotected in a society which still has not quite learned to be accepting of our beautiful people.

by Jane Fieldson

 

 

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