would anyone mind if they have any ideas opinions (also in chat for a wider audience)

[BCNSback]

Have got this in chat but I'm hoping some of you moight be able to help ( even if it's to tell me to bug orf )

supposed to be researching ( or trying to):
ASD/Aspergers,SLD, bullied, low selfesteem etc therapy work for both child and adult.. and how provision for this help is accessed: and what both parents and children ( including siblings) would want could they access a short break which was partly respite partly skills and self esteem buliding for all parties.

did any of that make sense.

Looking at it from the point of the reality of actually getting such information and help, rather than what is supposed to happen and the fight that goes with it all.

so tell me to bug off and get on with it .. or throw ideas at me please

You're going to have to give us some context, BCNS. Ie why you are asking, what is the background to the question.

Without knowing that, I can only make a couple of v general comments:

Provision is HUGELY variable for different conditions and in particular different severities. So no single answer to your question there.

Respite provision in particular is dire atm. Social Services budgets are being slashed due to the financial climate. There is a legal system which gives you a right to education support (OK, it's a huge and unnecessary fight, but...) there is no similar system to support your rights to respite or therapy. Because the disabled have few votes and make poor TV viewing, the only way to enforce entitlement is via the courts - so without that option you are stuffed.

We are the wrong people to ask about accessing info and help as internet forums are the best source so we are the lucky ones. How the feck people manage without eg Mumsnet I can't imagine.

any kind of work like that in our area doesn't seen to be available until secondary school age, and it accessed through the school and parents aren't involved.

Your question is a little unclear, btw. Not really 100% sure WHAT you want to know.

Okay the context: sorry didn't mean to drip feed. ( sorry it's taken a bit to get back to you folks was on a couple of calls).

right that basics are ( sorry for not much detail.. but we just don't have a huge amount of detail to give right at this moment).

I have the opportunity along with a couple of other people to basically offer short breaks to those who really could use them.

It would be run along side an exisiting ( like minded)business where a lot of the facilities are already there ( part of which would be used for partial funding.)

Myself and the others involved all have asd dc's and have all been talking about the fact that it might be an idea to offer small groups of families the opportunity to get away for a few days.
use the woodland based facilities, where the dc's could do activities and workshops doing things like ( this is very vague at the moment), but things like crafts, arts, drama, music woodland activities. self esteem building , communtication using, social interaction within small groups and sense of achievement type stuff.
But also where the parents could have a break during the days, maybe a bit self esteem building, massage type stuff, where they could also meet other parents in the same situation.

My role in this right at the moment is to
A) find out if this is something that would be used.
B) What those who would use it would want to gain from it.. or to have included.

I asked about information and provisions etc because everyone involved in this has had a flipping struggle, talking to lots of different people and fighting to get the information to be able to get what we actually need. I wanted to know really if this is a general thing and would information packs, where advice from the different groups and services are put together in one pack, would help.

hope that makes a lot more sense

Just wanted to add.. this isn't going to be a business of anysort and would not be making a profit ( incase your wondering) like I say the main business is already there.. It tends to get used by other businesses during the week.. therefore leaving a lot of weekends where it isn't being used. what we do need to know is what is needed so we can work out the costs involved and then fund this.

we are literally looking at it as a charitable type thing.

Not sure if this is of any use, so apologies if not. We have been on an NDCS (National Deaf Childrens Society) newly diagnosed weekend that was absolutely brilliant. Have a look here The kids were all well looked after which I think is always the main concern for these things. It also included info on all the different professionals we were likely to come across/could ask to see, talks from people with older children as well as an info pack. They do preschool weekends, leaving school weekends, weekends for children with additional needs as well as many other activities. I can't see why this wouldn't transfer to ASD. It wasn't exactly a relaxing weekend but certainly gave us info that hadn't come from a biased funding driven professional as well as not feeling quite so alone.

big car that's brilliant thank you so much.

( have book marked )

Yes it would be very nice to have such a place to go, where we and the DC, incl. ASD DS, could have fun and fresh air, without worrying about people judging, staring or tutting! On your other question, getting hold of provision for your autistic kid is like a maze - you have to be more cunning than a fox, and more tenacious than a limpet, to get even a half-way decent education for your ASD child. It is totally stacked in favour of those with money, and those who are articulate and know how to "play the system". Those who don't, or who are sunk into depression post-diagnosis, just have to make do with the (woefully inadequate) state provision, or get shunted onto something useless like "school action plus" on the grounds that their child is "not severe enough". The govt should get an autism "Tsar" to sort out the whole sorry mess!

thanks again for taking the time to post. the more comments I can get the better we can be informed. From that hopefully provide something that is actually needed and helpful.

please keep the comments coming .. I'll print it off when the thread dies.

what would like to do or have as parents?

bless you starlight.. your list really says it all tbh.. this is why it was agreed from the start that it should be families rather than just the children.

It should be fun and skill learning ( or having a bash at for dc's), siblings won't be the one with the wierd brother or sister and parents could make use of the facilities if they wish or just have time to relax.
Also it means that parents will be able to stick to a structured day and keep hold of their dc's routines.

( we personally have a major issue if things aren't done the way and time they should be!)

IStarlight I'll ask one of the ladies involved if she knows of any younger age range groups where you could link up with parents. ( might be worth seeing if we can do something thre to start with )..she's a lot more experienced than I am and knows the system and different groups etc well.

me: well I'm all new at this asd lark (although I've obviously been dealing with it for a good while on my own!) and I have been totally shocked at the process etc.

How lovely SM.
Have you (on similar note) ever heard of Oily cart theatre group who are fanbloodytastic.

You know my thoughts re evidence based treatment ad so on but that in no way means there is not room for less quantifiable ways of improving people's lives.

One leads every performance feeling like a better person.

Mindblowing.

moondog thanks looks great. If we can achieve only a couple of things with this , dc's get to have a good time, parents come away feeling a bit refreshed, with maybe some contacts of people they'd like to stay in touch with, maybe some info.. and had a bit of fun too.. then I think we'll be achieving our aims. We won't be able to fix things for these families.. but hopefully waft in a bit of fresh air.

and thanks star.. will keep all updated.

ooh great news and fab stuff on the musicians too star small things huh.

Starlight - have you thought about music therapy? If your DS had such a good reaction to the visitors then you may want to consider it. I don't know where you are in the country but we have been going here since DS was 18 months old. It is excellent and although Ds has physical disabilities rather than ASD it has helped immensely with communication and frustration.

'Music therapy isn't so easy to include and could weaken our case if we did (i.e. our case being the need for a data-driven evidence-based approach)'

Very true as lovely as it is there is a paucity of evidence to suggest it has an real measurable and long-lasting effect beyond making people feel good .

Not that this isn't a valid thing in itself but it is vital that public services provide interventions which stand up to vigorous scrutiny.