If your social worker..

[fanjoforthemammaries7850]

Looks really guilty when telling you you won't be getting any funding for respite and keeps trying to offer you free alternatives and looking really embarrassed when you say you are not having any respite in holidays, is it worth questioning the decision?

it's just extremely hard, don't exactly want to say I am not coping as I have heard about them starting on about child protection - methinks they have us over a barrel.

Thanks. Not sure I have the energy for the fight though but will read up on it.

that is a consolation,i know what a determined fighter you are!↲The reason I don't need respite is apparently because my elderly mum and auntie watch DD when I'm at work,which is hardly respite. I have health problems and DD doesn't sleep, is hyperactive and can't speak.plus needs fed/changed/lifted, wonder how much worse it has to be!

DD weighs about 18kg but no offer of any lifting equipment either,so just using NHS resources by seeing physio instead. Rant over!

Yes, I agree.

The social worker we saw was one of the good ones I think, but her hands are clearly tied, I think she would have helped if she could, and she did so as much as she could, and was concerned about us.

This is true, actually it also occurred to me that maybe she wasn't looking ashamed, but scared in case I challenged her!!!

We accessed "services" without SS involvement for a few years. This was via local charities that run clubs and schemes, I just paid myself and they are quite reasonable. There are a few that you can only access via SS referral or DPs but far from all. HTH.

Yes, we are accessing a few of those, on the SW recommendation, I think she was trying to do what she could without paying out any money!!

hi, theres no way you should be worried about child protection issues unless your child is being abused.

a desperate need for respite is not failing your child.

it was only by saying to sw we were in dire straits that we got 4 hours a week direct payments.

we keep asking about shared care, but they are not recruiting shared carers here. although my sw has advised me to write letters to the local press and to sw management.

can you let me know what services you access through which charities? i would be very interested in this too. (although i bet theres none near where i live)

and yeah, she shouldnt be concerning you with her budget worries.

services should be needs led, not resource led.

(hahahaha...)

I thought that way and then I read some scary stuff on here about child protection issues being raised.

I don't think the social worker we saw would have but i was scared.

We are waiting for a respite place at a centre here run by Capability Scotland, only a couple of hours a few times a week in holidays maybe but better than nothing, they offer music and hydrotherapy too.

We have also applied to a sitter service here (Edinburgh) but apparently the waiting list is at LEAST a year

If you really want to know what we have done that we funded directly, here is a list, the majority are charities. I may think of more later:

These are ones we leave DS at and he is well looked after. I've got lots of carers over the years through these places:

• For over 6 years we have used weekend and holiday clubs run by Resources for Autism. They are based in London but offer services in various areas, they are cheap and really, really good www.resourcesforautism.org.uk
• We also use weekend and holiday clubs run by Unity which is part of Norwood www.norwood.org.uk follow link to Unity under "What We Do", also somewhat London-based but some services in other areas especially for adults and schools
• We often go to Keen London on Sunday mornings, siblings can attend too, DD quite likes it but also likes to go out with me to a cafe while DS stays. They also run clubs in Oxford www.keenlondon.org
• There is a SN disco night called Clive at a local arts centre called Arts Depot www.artsdepot.co.uk

There are some activities that we have to attend (or send a carer) but I've always found these good in terms of making friends and meeting supportive people. As some welcome siblings it is easier with DD (7 yrs NT) but her needs can mean that some of these can't always work:

• In the summer we go to Somerford Grove adventure playground run by Haringey Autism, siblings can attend too, DS and DD love it
• There is an organisation called YASS! that is run by a committed and involved parent, contact [email protected]. Activities are generally for more hf kids but anyone on the spectrum is welcome and siblings can attend
• NAS branches often run activities. As we are in London we are in easy reach of about 4 branches so I make sure I get all the newsletters and email messages
• We used to go to something called the Memory Sculpture Garden but they lost funding
• In the past I have taken DS weekly to SN swimming, trampolining and horse riding (not at the same time!)
• We have gone to the Create concerts for disabled children and their families but DS has grown to hate them, although the rest of us like them so we've given up. Just got their new programme, contact [email protected]
• I know that there is a network of cinemas doing ASD-friendly showings. Not really DS's cup of tea. I think they are at Brixton, somewhere in the Oxford area and somewhere in East London

We have also used daytime only and overnights at the NAS School Radlett Lodge but this MUST be Soc Svs funded or paid for with DPs. These days DS usually goes for days during holidays and occasional Saturdays

I've always got my eyes peeled and radar primed for more activities and clubs to try.

HTH

I totally empathise Fanjo. We have had endless arguements with SW. We get on great with all other agencies but they make us feel like we are asking for the world when we ask for respite, and they did try the mention of the Child Protection with us too - said they were worried if we couldnt cope with him - we replied that just proves we need respite and then there wouldnt be a problem.

Initially they told us he had too many medical needs and they had nowhere for him I'm not a nurse yet I can care for him - I did the training required. Then when he went to school they claimed that was respite? Obviously thats only when he's well enough to be there. I often felt like leaving him at there offices so they could see how they coped.

We argued for respite for 4 years with letters from his Paediatrician, his GP to no avail until finally we have now got some - 1 night once a month, starting on Friday. The centre and staff are lovely and they have had all the training they need to care for him.

Dont let them wear you down, but it is soul destroying I agree. I though they were there to help make it easier?

chorlton, that is awful, that you had to fight so hard, but I am so glad you finally won your battle, enjoy Friday night.