what would you want from a support group

[yawningmonster]

I am in NZ in a semi rural area. A very small group of us (me and two others) are trying to set up a support group for families supporting children with special needs. Our very first gathering saw 40 people turn up all enthusiastic and interested. That was a little over a year ago and since then everything we have done has resulted in the three of us or sometimes an extra one or two people turning up. It is starting to seem like more work than it is worth but would like to make a success of the group.

We have tried a variety of times, venues, having speakers, providing food etc but not sure what people are looking for in order to attend. The very first one was supported by local council and so many people talked the talk of how necessary a group was, how they wanted info on all sorts of issues, wanted input into accessibility of local venues (eg ramps etc) but despite trying to provide information and speakers and opportunities to provide for these needs and interests we just haven't been getting people coming....
So what are we doing wrong or more specifically what could we be doing better in order to get the numbers and make a success of this.
BTW all families who identify themselves as having a child with special needs or having an interest in children with special needs are welcome to the group.

stop yawning lol j/k.....only group i could go to wouldn't allow dc, i couldn't get a sitter so couldn't go no matter what time it was, i found another group last year and it was for sn dc, parents would stay and sit in different part of building and get support, are you inviting dc to the group?

yes dc are absolutely welcome

what activities are available for dc? who looks after them? if the dc enjoy the group then the parents follow iyswim

we have only had one successful event. We had a box of toys and resources available but only 3 of us had children there at that meeting. I had dd as she is a toddler and generally goes where I go and there were two other preschoolers. Since then it has just been the three of us that have been trying to establish the group which means it has just been my dd (I generally take my own stuff along for her to do but the box is available in the room that we rent) The aim of the group is to support the adults but to have it accessible to the children as well but until we get the numbers we are unsure what people want in terms of provision for the children. We have the funds to employ someone to help out with the children but are loathe to do this as so far no-one has been coming except for the council funded event.

One that I go which is very successful is a sports group for school age children with additional needs. Parents sit in a neighbouring room and have tea and biscuits and chat. It is a great support network.

One that I go to

I would like to hear from other people what has/hasnt worked for them, with regards to help in school, behaviour management etc and how to get them this help.

Education what my rights are, what help i could expect, things like an IEP, a statement etc (i know now, but didnt when ds was first dxed) i was told all kinds of misleading info.

Oh and a cup of coffee

Hi Claw that is exactly what we are trying to offer to be honest. Unfortunately no-one is showing up. We had one meeting planned where we had asked the lady from the special needs library, a senco from the local school, a local councilor who is responsible for disability services in our locality and a speaker from Parent to Parent which is a support agency that provides information, training courses, parenting courses and a get in touch with the right group type service to families with children with disabilities. We advertised it far and wide and it was only us there.
Ben10 I will ask the group about the sports idea but to be honest I don't know that any of us have the skills to run the sports side of it but we could maybe contact the councilor and see if the council would consider a programme of this sort.

Shame you are in NZ, i would pop in for a coffee!

Maybe do you think it all sounds too 'official'. Now, 3 years after dx, i would welcome the chance to talk to the kind of people you have invited to speak.

However, 3 years ago when ds first received his dx, i might have felt a bit intimidated and not known what to ask, it all would have been a bit 'over my head' so to speak. I just would have appreciated, talking to people who were experiencing the same thing.

Im sure you have already thought of it, but maybe something like a just pop in, have a coffee and a chat, bring the kids, something very relaxed, no pressure, get to know each other a bit kind of thing. Then get a feel, for the kind of guest speakers that people like to hear?

Hi thanks claw yes we have done the just pop in and have a chat and when no one turned up to those we tried the invite some interesting speakers approach...wish you were in NZ too would love the group to succeed for my own selfish reasons as well as I think it is a real need in the community well at least that is the vibe from the initial council funded event.

our local group holds 4-weekly meetings in the evening with a speaker on 'burning issues', there is tea/coffee/biscuits, a library (mainly of donated therapy/research books read and recommended by other members), a 'toy's shop and a raffle

the group meetings vary in size from meeting to meeting, depending on the subject matter of the speaker.

there is also a closed/secret fb group so people who can't attend meetings can keep in touch and it's through the fb group that activities for DCs and siblings are promoted and arranged.

it's by far the best MULTI FACETED support we have found since starting on our journey, the camaraderie and support is astounding.

*disclaimer MNSN and RL friends have also been fabulous

unchartered do you know how your group started out and how it got itself known to its participators? That is essentially what we are aiming at...cuppa, catch up, topics and support. We don't have a library at this stage or toys but could easily run to a raffle.