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Autism care any advice. - Carers UK Forum

Autism care any advice.

Tell us a bit about yourself here.
Me is a newbie to Cares UK. Joined as I am about to move to Islington, London to care for my 14 year old granddaughter as her behaviour resulted in her being removed from the family Home. She is autistic and her meltdown put her siblings at risk, me to now I think about it. I was a Social worker for 30 years working with teenage with behaviour issues so have a lot of knowledge. We have a good relationship but I was not her carer so this may change. We have agreed to write a book about our joint experience.

I am giving up a lot to do this, it’s not really a choice but if I don’t she goes into care, SSD (social services department) have allocated up a two bedroom house and hope to move in together in September 2018.
Any one in a similar situation or any advice would be very very welcome.
I read the newbie post very useful.

I am looking forward to the role but reading posts on ere is making me think my life maybe over, any positive experience ie Life vscare balance and how you did it?

I like the way this all works, real people, real problems, real advice

Hi Lez.

Not a direct answer but ... a kinship carer ?

https://www.grandparentsplus.org.uk/wha ... nship-care

https://www.familylives.org.uk/advice/y ... -with-you/


Worth exploring as the obligations imposed on LAs are slightly different to that on family carers.

Kinship and / or family carer ?

The jury is still out :

https://www.carersuk.org/forum/news-and ... it=kinship
Welcome to the forum. My son was brain damaged at birth, VERY hyperactive, unable to concentrate at all. I had to fight for proper education, right up to the Secretary of State for Education, but it was worth it. The council was ordered to pay for him to go to the Sheiling School in Ringwood, a Camphill Steiner School. There will be one nearer you. If behaviour issues persist, do not rule out residential education. There is a long future ahead of our children, and they need the very best chance possible for a life as near possible to normal as we can make it.
Hi Lez, welcome to carersuk. That is very kind of you to agree to have your granddaughter to live with you. What a shame that she has had to leave her family home.
The idea of writing a book sounds good - how about the two of you writing in a diary each day about what has happened, on a daily basis, if it was a good or a bad day, what could have been done better etc. She may well feel calmer now she is away from her siblings, lets hope so.
. Be careful when she has friends round, make sure there are strict boundaries about what they can and can't do.
Are you working? How do you feel about your granddaughter being in your home on her own, can you trust her? Have you anyone else to help you care for this troubled girl? I do hope her family will come over to visit her sometimes.
That's great that you've got a good relationship with her.
Please let us know how you get on. Your 30 years of experience as a Social Worker will stand you in good stead.
Hi Leslie,
Wow taking on a teenager is tough enough, let alone one with autism! Mrs A always says I should write a book re my experiences with S, he moved in with me aged 9. He has autism too.

Your background of working with troubled teenagers will help and means you aren't going into this without an idea of what it will be like, but of course, as I'm sure you'll appreciate, 24/7 caring is different to a day job/ working shifts. I'm assuming your granddaughter will be at school during the day? I hope so, because you will need a break. Does she have any interests outside the home/ a club she can go to etc? Also try and enrol her in some activities during the holidays especially the summer one!

If you can find a Cygnet Course, I strongly recommend it. It covers ASD specific strategies for supporting a young person with autism and also the chance to talk to others caring for a family member with autism.

Forgot to ask, how severe is her autism? Does your granddaughter go to a special school or a mainstream one?
Although it's very very early days yet, I would urge you to 'think ahead' to what is going to happen in the years ahead. Will your granddaughter ever be capable of living independently, or will she need non-stop care from another 'live in' person, whoever that is, or could she manage with supported accommodation etc etc?

She is only 14. She is going to live a long long time - way beyond your life span. What is to happen to her in the future, and how is her adult life going to pan out?

Does she have any prospects of becoming more independent and functioning in a more 'neuro-typical' way, or is caring for her something you will have to do full time for the rest of your life?

These are horrible questions, but in the end, what is to happen to her....and to you?

I ask because so many carers do not realise that they may be signing up to a 'life sentence' - not their life, but the lifespan of the person they care for.

Sorry if you know all that inside out, but sometimes it takes the brute reality of dedicating your life to another human being full time to realise that you didn't quite understand what it was you were letting yourself in for.
More on the kinship carer angle ... the BIBLE :... in .pdf format :

https://www.leeds.gov.uk/docs/Kinship%2 ... 20COPY.PDF



About this guide

1. What is kinship care?

2. Informal kinship care

3. Private fostering

4. Looked after children and kinship foster carers

5. Residence orders

6. Special guardianship orders

7. Adoption

8. Benefits and other sources of financial help for kinship carers

9. Getting legal advice

10. Helpful organisations

11. Further reading

12. Glossary

Grandparents Plus donations form

Mentor donations form

Now posted on the main KINSHIP CARERS thread.