What do you look for in a support group?

[streakybacon]

I'm sort of doing a poll on what people look for in an AS/ASD support group.

Would people give me a list (just bullets, nothing too detailed) of what you'd look for in such a group, what would make you want to attend regularly, what you would hope to get out of it. Also, if there's anything you like it NOT to have.

When I've got some comments I'll explain why I've asked.

Ta
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I think it would really help if these groups had new members meetings (for particular aged children).

I'm too scared to roll up to any old meeting, I don't know whether they cater for my DS's issues or if they are welcoming or what to expect of them really.

I would want to be in a supportive group where I could discuss problems I'm having, share ideas, learn about facilities we could use etc etc.

Must look up my local one and pluck up the courage to go!

It sounds like the parents should take over and the support workers should be doing the organising of practical things like the venue, refreshments, booking speakers that the parents want.

There are dangers of encouraging people to express negative emotions, sure. Some people don't shut up and some people don't want to hear negativity, or simply don't feel negative and feel exhausted by parents who let it all out. The group I am in works because we all have a similar sense of humour - i.e., BLACK and we all laugh about the worst things. I think that is down to a lucky mix of like minded parents though.

You do need ground rules and you do need a structure to stop it being a free-for-all where that one person never shuts up (me quite possibly!)

IME the best groups have been set up by parents. I stopped going to the sn preschool group for a while as the LA tried to get involved and thought we needed the HV to attend every session. She had no SN experience, she probabily learnt loads but she offered nothing to us parents.

I'm copnsidering setting one up myself if I ever find a venue (not easy here, lots of retired peeps groups booking up only space).

For me the closest group is miles away anyway but what makes it unworkable is:

They never accept toddlers- so I can't go, full stop

They meet just after school run on a weekday but never in holidays so ds1 cant go either and it rather blocks aprents of MS kids with school runs to do

No judgemental idiots making comments about kids at varying places on teh spectrum: no DX? Mild? severe? fine, come on in. If you need a cuppa and a chat you are welcome.

The most effective support I have found happens on the sidelines of the SN rugby club we attend, becuase it is informal, and becuase it is not DX dependent. In truth i;d like to set up a general SN group but need to be able to tailor to other means if that makes sense 9and NAS interested in helping) but general would be better. I really don't care of your child has GDD< CP< ASD, PDD_NOS, Angelmans or whatever- a cuppa, chat and if you need it run through of your DLA form is on offer.

In fairness the NAS lady who comes to Uni seems to get that the system is defunct and failing 9although would acknowledge she seems HFA ? AS baised but that may be her particular role as she works in the community with adults trying to be independent)

This has been very helpful, thank you all. Got some great ideas to put towards the organisers now and people seem to agree with my primary concern of being able to offload is an essential. that was my aim in posting, to find out what people thought about that particular requirement.

Thanks

as a RNLD with an interst in ASC, i attended the international autism conference in london at the weekend. i am also looking at seeing if parents up north -Lancashire- would be interested in formed a group- not a support group more of a discussion group, like what works and what doesnt. anyone interested on know anyone that is? my ideologies are along the lines of the autism trust www.autismtrust.co.uk and the autism file. www.autismfile.com so like minded people please

not in the evening - I am a single parent, as a disproportionately high number of parents with children who have SN are - and I cannot attend. No, I cannot just 'get a babysitter'.

Accessable by public transport, preferrable walkable - again, I am a single parent, cannot run a car, and cannot drive 30 miles out to the middle of nowhere.

Decent teabags.

DON'T say "At least he's high functioning" - in mainstream education, high functioning autism means extremely high stress levels for everyone involved, especially the child, because people don't get why he can do his seven times table and explain the function of a gear but cannot say "I think I had a club to go to, but I've forgotten" or "Jack keeps hitting me and I want him to stop"

LET US RANT. Let us pour out our bile, let us cry, and say 'they' are all bastards and 'it's' not fair. Let us. We braveface to our children, out partners, our families, our friends - let us have some support at a support group.

Starlight McKenzie.
Hi, My ideologies are such as are long the lines of the autism trust and the autism file, as well as the autism clinic. i am in the process of setting up a website for people in the north and would like to know what parents feel about professionals.. i am commonly told that professionals dont listen to parents. THATS the most important thing! we need to listen to parents they know their child best. anyway..my ideologies are around autism being a biomedical imbalance and from speaking to parents at the weekend and those who i work with i am more and more into this. why dope up kids when we havent looked at all the causes. i beleive in the works of andrew wakefield and im not ashamed of that. i do think SOME children can not detoxify themselves properly and need biomedical help, not chemical restraint. does anyone else thing this?

Hi there
I live in borough of greenwich(london) and i can teel you. parents need to tell the story/excepencies one to of load but two and i feel most important is to hear other parents say yeah, and thats my son or daughter, that makes parent/s feel there not alone.
I know my son has auitsm, ADHA and SLD. The second and third dx came later, but his main is autism.
Parent/s feel isolated, cause ignorant people outside dont understand our child and often say things.
But when your with a group of people like yourself who understand what its like, dont take away there chance to voice there point because other parent/s could learn from that and it may help them to deal with furture issues.
I know this so well. The comments, the looks and the real nasty people.
From my support group run by NAS greenwich and GTLLA i help parents find a way of telling them about there child without saying a word, cause i sick of people and now the look read and shut up, but most unexpectedly i get asked about my badges.
I wear them so i dont have to explain me childs behior or have to applasises for the million time.
My badges say
I love my child with Autism
MY child has Autism whats your excluse. This is my favourite and i where it all the time on backpack so all can see.
This i learnt from aparent, then i went looking and found them on EBAY. Just type in autism. Thats all i can say cause i dont want to advertise there website. It has nothing to do with me. But boy does it work.
So Like others have said says what the next meetings about but also keep a time slot open for general disscusing.
Parents can be a assett, passing on information ect. Cause the professionals out there dont tell you nothing.
Suzy (mum of autistic son)

Perhaps the issue with a creche could be met by older siblings - mid to late teens i mean - coming to the group and looking after the little ones - with an adult supervising of course. They understand ASD and other disabilites and are often overlooked as a resource for care. They also understand and can verbalise what its like to be a sibling of a child with special needs where as young ones cant and for newly diagnosed parents its a valuable insight.