Special needs support groups

Joining a support group | Setting up your own support group

While there are groups out there for children with general special needs, getting support can be easier if your child has a diagnosis. Although the merit of labelling children is open to debate, it can be the key to unlocking the appropriate channels of support – both formally and informally.

Joining a support group

"We go to an "Opportunity Group" playgroup for special needs children. The children get some (usually one on one) help from a volunteer while the parents have a cup of tea and a chat. It's lovely to be able to take my son to such a non-judgemental environment and it's nice to talk to people locally who know the system and have seen the same professionals etc. One of the problems with not having a diagnosis is that it is hard to know which specific support group to join so we haven't joined anything else as yet." Saker

With a diagnosis, you know where you 'fit in' – for example, you can seek out groups of families with a child with a similar diagnosis. If you have a diagnosis it's also more likely that support groups for that diagnosis will be easier to get in touch.

"My son is deaf and I have met lots of other parents and children through our local NDCS group and an implanted (cochlear implants) children's group. I find the info exchange very useful. I hope it doesn't sound bad, but I also find it useful to compare my son with other children, to see what to expect and try and change anything if I can. I think both positive and 'negative' examples are useful. I like the comments I get from other parents who haven't seen my son in maybe six months or more, it's nice to see his progress through other people's eyes. I also like to see how other children have got on meanwhile and that they are really all 'getting there' sooner or later." Cristina7

The benefits of support groups can be both for your child – they will get the chance to mix with other children – and also for you: you will get the chance to meet parents who will hopefully offer both advice and friendship.

"I take my son along to one local support group which is every other Saturday at a junior school. They have a lot of toys and facilities for SN children and have one-to-one support. My son really enjoys it and lets off steam, mostly in the soft play room and I toddle off for a cuppa in the parents' room where I can let off steam, too. It's good to speak to the parents there - we swap stories, consultants' names, guidelines etc and I have made some very good friends there." Chocol8

There may also be other advantages to joining a support group – depending on how organised they are, some may have newsletters and similar information available, or even advocates who might be able to help you in person.

"I am a member of a behaviour difficulties group which has guest speakers every so often, and we receive newsletters and updates every month. I really find it beneficial." Chocol8

Searching the net is a good place to start hunting for support groups. If you want to know about local groups, then your health visitor or GP should be able to help. If they don't have any immediate suggestions, then ask them to find out more information for you and get back to you.

Setting up your own support group

If there isn't a group in your area, or if there isn't a group at all for supporting families dealing with a diagnosis like that of your child, then don't rule out the possibility of setting up your own support group.

"I have recently set up a Down syndrome coffee/support group for our local area, with a friend. We basically found a small hall, chose a day and time to meet each month and then contacted all local hospitals, GPs, HVs etc. Also did a press release to local papers and radio stations. We had four people at the first meeting (two of us plus two others) and then the second meeting there were two others. We take some of our children's toys and provide refreshments. Over time, we plan to get speech therapists in, or someone to talk about DLA or whatever, but for now it is a monthly coffee group." sharonkitten

Contact a Family produce a booklet, called Starting a Local Parents' Group, with info about setting up a support group. Mumsnetters recommend this as a good place to start: "It takes you through the process and has some useful info and ideas."

"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." PeachyIsNowAChristmasFruit