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Original poster

Setting up a support group

10 replies

DingDongTiptoesMerrilyOnHigh · 07/12/2006 00:21

Hi,just wondered if anyone has ever set up a support group in their local area?

My DS has selective mutism and apart from the websites which one in paticular have been really helpful I am finding that their is not much information out their and still a lot of ignorance on the subject of SM even from school and so called professionals I have been dealing with.
I have enquired about a group for SM in my area which there is none and wondered although I am no expert on the subject,far from it,apart from dealing with my DS on a day to day basis whether anyone else has ever set up a support group for other parents in your paticular situation just to chat etc.
Don't know how I would go about it,maybe a website for my area,not sure.
Anyone with any experience would value your input.

OP posts:
sharonkitten · 07/12/2006 08:14

hi - I have recently set up a down syndrome coffee/support group for our local area, with a friend (whose dd has DS also)

We basically found a small hall, chose a day & time to meet each month and then contacted all local hospitals, GPs, HVs etc. Also did a press release to local papers & radio stations.

We had 4 people at the first meeting (2 of us plus 2 others) and then the 2nd meeting there were 2 others. We didnt mind though if it was just the 2 of us as we knew it would grow over time

We take some of our childrens' toys and provide refreshments. Over timne we plan to get speech therapists in, or someone to talk about DLA or whatever... but for now it is a monthly coffee group

Original poster
DingDongTiptoesMerrilyOnHigh · 07/12/2006 09:58

Thanks Sharonkitten for your reply.

You have given me some good ideas there and will look into it.
I was'nt aware that I could contact the professionals to get involved.
Did you get a good response from them?

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PeachyIsNowAChristmasFruit · 07/12/2006 10:49

Hiya.

I have worked for a few, and ended up temporarily running one for a bit (tha natinal hyperemesis one).

A website is handy; not only does it save on the cost on handing out info (just go to our website....) which for us was huge, it did recruit members too.

Its often quite easy to get professionals involved, and you can have speakers in from the charities- when I worked for HomeStart (there's a good first one for you LOL) we asked if we could visit groups for chats, both for recruiting famillies / volunteers and general awareness. That sort of thing then gives structure- a ,mereting with a presentation and then a coffee and chat time is quit easy to organise.

Another one worth trying, and relevant, is BIBIC (british institute brain injured children) - if they can't get a specialist to see the group they can often get one of their famillies out to talk to you. I'm sure you know all the other charities in your area too.

reiver · 07/12/2006 11:59

Contact a Family produce a booklet with info about setting up a support group called "Starting a local parents' group" - either look on their website www.cafamily.org.uk or give them a ring Tel 0808 808 3555. It takes you through the process and has some useful info or ideas.

Original poster
DingDongTiptoesMerrilyOnHigh · 07/12/2006 12:04

Peachy thanks for your advice.

I don't feel very confident in running a group or website as I am no expert on Selective mutism only have experiences to share with other mothers for suport.
I suspose that's where the professionals come in to provide the answers.

My DH is linked with someone at work who designs websites so could get help there.
Does it cost anything to set up?

Not sure what response I Would get in y area and how widespread SM is in this area but I feel from talking to other mothers at school that it is not very well known.

I am in contact with a lady who set up another website on SM who has written manuels for schools on he subject and also a retired lady who lectured on SM 30 years ago and sadly in this country people are still quite ignorant on he subject of SM .
It seems there is more information available in the USA and Canada.
Will do some reserach and see what I can organise.

Feeling a bit nervous as Don't know If I am taking on too much about a subject Idon't know too much about.
Although have been told I am an expert as far as my own ds is concerned and that sharing my experiences with others could help them.
Before my ds was diagnosed i had not heard of SM and wonder how many other mothers out ther are unaware?

OP posts:
Original poster
DingDongTiptoesMerrilyOnHigh · 07/12/2006 12:05

Reiver-thanks for that,will take a look.
Any help gratfully recieved.

OP posts:
Dingle · 07/12/2006 16:25

We are actually just expanding our Down Syndrome group from being a local group to becoming Kent wide. It has taken years to build and we were "lucky" enough to have the support of the DSA for a few years. We had just become established as a very small, active group and then they pulled the funding!!

Luckily though we had a few strongly motivated members and we kept the group running. It has been hard going to try to expand though. New members tend to be those with young babies rather than those with experience of children with DS at older levels.

Circulate leaflets via clinics, HVs, doctors surgeries, even pre-schools, schools,portage.....

Good luck! I have heard of a couple of children locally who have SM, but no longer have a contact with them now.....but if you do eventually have an online support system, shout and I will always pass info on if I come into contact with the families again!

PeachyIsNowAChristmasFruit · 07/12/2006 17:08

The website we run for the kids carnival club cost £9.99 to register then £5 a month, I guess if that is a lot varies by person? I wondered if it might be possible to get the lady yu know who has a website yto have an extension built on to her site if she ahs the space, its eprfectly feasible (if you need help my DH will happily advise)

Original poster
DingDongTiptoesMerrilyOnHigh · 07/12/2006 17:14

Thanks Dingle ,that would be great.

Will get DH to have a word with his brother as well as he has his own company and gets involved in tup websites so he should be able to point us in the right direction.

It's a bit of a scary undertaking but DH is always saying to me you should do it as I am always at the library lookng for books on the subject and searching out new websites for information and have gathered quite a bit of info on the way.
Something sadly that the school and other professionals I have come into contact with have failed to do.
I know they have big workloads and cannot know everything but you would think when the people working with my son for his speech delay and toileting problems would also look for a link with his SM also which they have failed to recognise.
Especially his toileting phobia they say is not a medical problem and is not linked to his SM but all .
But in my in experienced opinion they are both anxiety related.
But that is another story I am dealing with at the moment and is falling on deaf ears as far as the professioanls are concerned.

Why is it parents with special needs children seem to have a fight on their hands againest the professionals who think they know best everytime,or is it just me?

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Original poster
DingDongTiptoesMerrilyOnHigh · 07/12/2006 17:22

Thanks Peachy ,that's very kind of you.

I am sure I will have more questions I need answering re website so I may be after your DH's advice.
The other website SMIRA has been running for a lot of years and has been a great help to me.

Would be looking to set up one myself and maybe just a local one to start with.

I checked the "contact a family" site and they have no SM goups in my area,so maybe making mine local for the time being would be a good idea if their is nothing available in the way if support groups here at the moment.

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