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Hi there - Carers UK Forum

Hi there

Tell us a bit about yourself here.
After watching this morning decided to see what carers uk was all about. I am a full time carer to my 4 year old son who is at present under assesment but is autistic he also has a possible second syndrome in the background called bardle Bidel which is hard to deal with as no one will confirm if he has it . Its a bit like living under a sentence not knowing, with all the well meaning professionals cheerfully telling you what could happen for example loss of eye sight and kidney failure but nobody having any answers or solutions but telling you - "you will just have to wait".
The sickening thing in all this is that he cannot communicate so if the eye sight goes he could be locked away in his own world.
After a horrendous year of my husband in a near death motorbike accident, losing his job, our home and finding out that he had an affair I am trying to carry on as normal I cant really cry any more over my son and I just need to fight for as much as I can get for him, to try and forgive and care for my husband and still be a mummy to my other little boy who is desperate for attention. I have no family as such in this country they all live abroad so have little or no support or breaks.
After reading I just know I have to go on and words of support or advice is much appreciated
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Welcome Georgie

There are many member's on this site that will be willing to help you and give advice.
So just keep looking at the post's and in a short time you will get the advice you need .
You have had a rough time I can see that after reading you post.
So if we can help we will good luck and keep posting.
Kind regards John.
Just like to add to Johns welcome to you too Georgie.

Although each members circumstances differ we all give/get support from the forum and try help with information where we can.

Look forward to getting to know you and your family.

Rosemary

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Hi Georgie.

I know it's frustrating but it's the same with most conditions and disabilities. There may be a general pattern but each one affects different individuals differently.

All you can do - all any of us can do - is take one day at a time.

I do recommend that you contact your local authority and ask about your local Early Bird scheme - most areas have one and they are aimed at helping parents to work with their autistic children. The most important thing is to learn to tackle only one issue at a time - whether that's about behaviour or skills learning. It's easier and more effective than trying to tackle six things at once. Plus you get to keep (relatively) sane!

As for the other condition I've no idea (never heard of it) but hopefully someone else will be able to suggest something.