Advice on starting a ASD support group for parents and children.

[Marne]

Hi, some of you may have seen my other thread.
Due to the lack of support in my area (our nearest Support group is an hour away) i am considering starting a support group for parents with AS/ASD children. I would like it to be a group where every one is welcome (parents, children and siblings), so parents have somewhere where they can come and chat to other parents of ASD children whilst the children can join in with activities (Art ,Music, Dance etc..).

I have never done anything like this so i have not got a clue how to go about it or where to start. I have contacted the NAS for advice and to check that there is nothing already set up in my area, i know i will need to find a venue and maybe get some funding but what else will i need to sort out?

Also what would people like to see at a support group in the way of activities, advice for parents etc?

Please feel free to tell me if you think its a bad idea as i am still unsure of it myself mainly because i'm not sure i have enough guts or the brain to carry this out .

Things that come to mind:

Insurance, in case things go wrong - for equipment, for volunteers, and for public liability

Policies on equality and accessibility

Health and safety - training and assessments and record-keeping for all of this, including fire risks, trip hazards, etc

Data protection requirements if you're storing any personal details at all - names, addresses, dates of birth

The venue may have some or all of this, but you'd need to check with them exactly what's what. Most venues need you to agree all sorts of basic safety and insurance things with them before letting you use their space these days.

You'll also need to be able to consider whether it's ASD-friendly. Many venues aren't: noisy, echoey, flickering fluorescent lighting, no way to secure the doors to stop the runners, etc.

Equipment - how will you entertain them all for that amount of time, or will the parents need to bring their own stuff?

Then there's the challenge of all the different points of view and having to mediate between them.

Brilliant idea, but having co-run a toddler group for some time, not that easy. Worthwhile if you can get a bit of help and interest, definitely.

Will the NAS help you in some practical way too?

Thanks Amber, i am hoping the NAS will help, i think i need to find somebody else to help me get it up and running as its a lot for one person to do. At the moment i am doing the 'earl birds course' at a local SN school so i maybe able to talk to someone from the school and maybe even use the school as a venue (as its fully equiped for children with ASD).

If you have a local Sure Start centre, they might be able to help/advise/provide a room/etc

Ooooh just wanted to add, you said about allowing siblings - dd and I go to a local sensory group and during the holidays (when the school age children come too) the dynamics of the group change hugely. For my dd, not for the better - there's often too many people, too much noise, etc.

That's the challenge of any ASD real life support group, I think. By its very nature I can't join in with them because I can't do the attention-switching between people, and many (not all) children with an ASD find the noise and sensory overload scary or threatening rather than useful. But the parents (er, mostly the NT ones) certainly need to get together.

Marne, if you can find a number, might it be worth phoning your nearest group and seeing what works for them, if they have any advice too? I have to admit that the group i go to is very small (4-5 children, some ASD, some DS, etc), and we meet at the local Sure Start in a secure room with already-provided sensory toys etc!

You're right Amber, and i think the parents need it far more than the kids (in my case, certainly!) We have a group about an hour away from us that meet up one evening a month at the pub - no kids, so no interuptions etc.

I wanted it to be mainly for the parents but as i find its hard to get time to go somewhere without the dd's. Dd1 would love to be around other children similar to her (AS) but she can cope with a room full of people, dd2 on the other hand would only be able to cope with a small group. I'm hoping to find a venue that's big enough to provide quite areas, maybe an area for younger children and an area for older children. Parents would be responsible for supervising there children if the choose to bring them.

I want to be able to provide information to parents about what help is available in our area, advice on filling out forms (DLA, Family fund etc) and hold talks from professionals.

Just had a look on google for our nearest sure start center and i have just found out that there is a new center opening near me (well 20 minutes drive away).

If you have parents responsible for supervising then you generally exclude people like myself -who can't supervise ds1 + his siblings alone & people whose children cannot be left unsupervised in an unlocked room (they can come but can't talk to anyone else as they're glued to their child). I am pretty much unable to access any SN for the family activities unless I find babysitters for ds2 and ds3 (when it's no longer the family). Which isn't necessarily a problem, but it just alters who turns up.

We have found different 'types' of people come to day/evening parent sessions.

Talks from SS etc always helpful.

You can affiliate with the NAS but remain independent or you can become an NAS branch.

Memories of pulling son back through doors/windows/at one stage the emergency fire exit at the back...He'd perfected the technique of waiting for someone to come through the door then legging it at top speed past them.

Its hard to know what to do for the best, if you say 'parents only' then you have the problem of people being unable to find childcare, if you say 'children welcome' you have the problem of supervision and insurance, if the group provided supervision/childcare would i need trained staff to provide this?

And if you have awkward people like me who are ASD and have an ASD child, then we might both need supervising

Yes that's true Marne, you just need to decide who it is you want to engage and realise you can't reach everyone.

It is VERY hard for a group like this to provide supervision/childcare because you need people with so much experience (I don't leave DS1 with people who are inexperienced because its not safe)

Hi Marne, I help run a small group for parents of children with all disabilities - quite a few have ASD.

It is quite chaotic and not necessarily a good place for parents to speak to one another, but then we don't have workers to take the kids off our hands (most have challenging behaviour and would need a one-to-one, so huge cost implications). The parents tend to meet separately e.g. nights out and at our meetings, so get time to chat away from the madness.

Contact-a-family have information about starting a group - look online at their list of leaflets and order which ones you think would be helpful. If there is no other groups around, you may be inundated with enquiries, but you could always call an initial meeting to gather willing parents together to set up the group with you rather than doing it all by yourself.

Thank you for all your advice. I have contacted NAS and they are sending me some information in the post, they are also contacting the person who deals with our local area to check that there are no other groups near me. Next week i will look into a venue (possibly the new sure start center).

donkey- i like the idea of calling a meeting to find other parents to help set up the group.

If there are anyone on here in the North/west Dorset area who maybe interested in coming to the group or helping that would be great .

would have toconsider is it for only parents with kids with dx of asd or for those waiting to or those that have asd traits .
we findourselves often excluded from asd support groups as we dont have dx of asd , just asd traits ,even though a lot of ds issues are similar.
for example there was hanen course here recently but was only for parents with kids that are dx yes ds is non verbal and would been intresting
Would be something you have to think about

It would be for people/kids with and without a dx as getting a dx can take so long. (i'm still waiting for a dx for dd2).