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Hi, I am new to the cares uk site and wanted to see what it's like. Both me and my wife are carers for our 7 year old daughter and finding it very exhausting.
Hi Jonathan, welcome to the forum. Can I ask what is the matter with your daughter? (My son has severe learning difficulties, now 38). Are you getting any help from Social Services? Claimed any benefits? Know about the Family Fund. I'm happy to share experiences.
Hi bowlingbun,

She has Hydrocephalus and Autism. These are the main illnesses. We are aware of Family Fund and get DLA for her. We just feel tired all the time. Most of my daughters teachers and helpers are for her only and we do nt get any time or chance to sit down to talk to people in the same situation. We both suffer from stress a lot and time when we just need to have a break.
I think I spent my first few years utterly exhausted too.
It took a long time before my son's brain damage was properly diagnosed, so I was labelled a "bad mother" despite the fact that my eldest son was perfectly behaved, so I didn't get any offer of help whatsoever!
You need to contact Social Services and ask for a Needs Assessment for your daughter, and a Carers Assessment for yourselves. Have a look at the local authority website and look at disabled children's services. That will give you an idea of what you might be entitled to. What authority do you come under? Someone else here might be in the same area.
Hi Jonathan
In some areas there are local support groups. I know someone who found them invaluable. I think they are run by autism UK, who have other help for parents too ... pport.aspx

Might be worth doing a search for your own area

Young Minds is another charity with a parent's helpline and support

I think you'll soon find you are not alone, but you may need to be prepared to take the initiative to start a group if there isn't already one in your area

Best wishes
Some friends and I got so fed up with the lack of facilities for us and our children that 30 years ago we started our own group. Google "SCARFNewForest" for further details.
In my day everything was free (I was good at finding money from various sources!) and all the family was welcome to any of our events. We ran a 2 week "playscheme" but because a parent always had to be with their child, we didn't have to meet any rigorous staff requirements. As all the family could come, the siblings could have a chat, and the parents too, so it was very sociable.
Anyone could come, you didn't have to have a formal diagnosis, because those can take ages! This group changed my life, gave me back my confidence. I gave up being Chairman when I was studying for an Honours degree in Business Studies.
Thank you all for your kind words and your helpful information. It's nice to know it's not just me and my wife who feel this way.
Hi Jonathon,

Welcome to the forum, I hope you find it welcoming and supportive.

I care for S, he has autism and is now 25. Life is rather a roller coaster ride!

Have you done the Earlybird/ Early bird plus training course, it's a course for parents and carers and covers all aspects what autism is, support on parenting a child with autism and info on local support. The National autistic society should be able to help you find the most local courses operating.

Alternatively, there is also the Cygnet training course for parents, which covers what autism is, techniques to support sensory needs, communication and behaviour, plus info on local services. Contact Barnardos to find local courses. The good thing about these courses is that you get to meet other parents who have children with autism, which in invaluable. ... gramme.htm

Contact a family is a great organisation for finding local events, groups and meeting other families too. They also have a newsletter that you can sign up for which is free.


PS does your daughter attend a mainstream or a special school?