The Support Group Experience


Podcast Episode 51. At some point in all of our journeys, we need support. Some of us find it in family and friends, others look to support groups. In this week’s podcast, Elaine Kelly, who runs a support group, talks about how support groups can help when maybe others around you simply don’t get it.

Elaine explains how her support group is run and what she believes is important to consider to provide a supportive and welcoming environment. She reveals how support groups can help against isolation and also make people aware of organizations and resources they can use.

Elaine also addresses why some people don’t seek out support groups and explains how for many people they are only used for short-term support and for others provide a long-term space to share.

Sharing our knowledge and experiences makes all of us stronger. It doesn’t have to be in a support group setting, of course, but wherever we do it we are making the journey of those following us that little bit easier.

 

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Podcast Transcript

DEBRA: Welcome to episode 51 of the Journey Skills podcast. It seemed apt after the holiday season, to talk about something based around relationships, given that at this time of year, it’s all about family and friends and lots of socializing. So, I’m talking to Elaine Kelley who runs a support group for parents who have children with additional needs. Now I confess up front, I wasn’t one for support groups when my daughter was younger. And I do wonder, if you maybe go two ways with this. Perhaps when you get a diagnosis, some people go inside themselves, others reach out. I was very definitely the former, keeping way too much inside for my own good. Personally, it just felt to me that, and this was really more at the diagnosis stage, that suddenly I had so many people that needed to talk to me, professionals, all the people around me wanting to know what was going on, that deliberately going somewhere to talk to even more strangers was way too much to ask.

Also, I felt (and now I know it better), how would anyone understand my journey? how would people know when I’m going through? how would they understand how I feel? Of course, I had people around me but if I’m honest because they didn’t have a child with additional needs, they’ve sometimes just didn’t get it. I quickly made a few friends that were going through the same things as I was. And yes they got it, but often because of geographics, there was an issue with getting together with them and we weren’t always able to support each other in a very regular way. So, in many ways, I’m a late convert to support groups, and certainly if given another chance, would have embraced them much more enthusiastically.

Of course for some people, they do have great family and friends who can provide the support they need. But for others, maybe they do need to speak to people who even if they’re not going through exactly the same challenges, can at least identify with some of the feelings. There’s no denying some days it’s hard to get out of bed, particularly if you’re putting your child through things you know are good for them, but they hate you for, at least in that moment, they hate you anyway. Now I understand that other people who have been through a similar journey, are great listeners, perhaps because they know that there are no simple answers, no instant fixes. Sometimes people will try and tell you that and it just doesn’t help.

Elaine talks about the group she runs which works along the same lines as any group, I guess. There are a couple of small things she talks about that I hadn’t even thought about in terms of how to make a great group. And one of those is the idea of making everyone feel pampered. She does this through people’s stomachs. And having been to one of her groups, she certainly does have great cakes. But she also talks about the benefits of the group and what it can help people with. And if you’re thinking about starting a group yourself and she also gives some really great practical tips on how to get started. I’m not suggesting groups like this are for everyone. But I would say if you’re thinking about seeking out support in this way, then go along to a local group. It can’t hurt, and it just might help. Anyway, let’s hear it from Elaine.

DEBRA: Today, I am talking to Elaine Kelly who runs a support group for parents who have children with additional needs. Welcome, Elaine.

ELAINE: Hello Debra.

DEBRA: Can you just tell me your story, where how you got involved in the group and what that actually involves?

ELAINE: Okay, so basically, I was working as a home-schooling worker. So, I was often working with parents who had children with additional needs, supporting them through that what was then the statementing process (UK only). And actually, I didn’t set this group up myself. It was one of my colleagues, Janice, who was also a home-schooling worker. It was one of her parents that came up with the idea. That parent still comes, and the groups been going now for about eight years but her and Janice basically got together and started up this support group. The format basically is that, everyone comes along, we normally try to get a speaker to talk about a particular subject, it can be relevant to some people, maybe not so relevant to others. So, it started off, quiet slowly as you can you imagine? People didn’t know what to expect. But it’s a really lovely, friendly group and I got involved because I basically came to help Janice; make teas and coffees, get the chairs out, make people feel at home, that sort of things. So basically, she ran it for a couple of years and then she got too busy in her job. It does take time out of your day, obviously trying to arrange speakers, letting people know when the meetings are happening. And then another colleague of mine took over for a short while. And then she left! And it was okay Elaine do you want to take up the mantle and I said Yes.

And, I just be looking back at how long I’ve been doing it and just discovered that I’ve actually been running the group now for 6 years. So, the groups been going for 8 years and I’ve been running it for 6 years. And I absolutely love it! I always make sure any jobs that I do all know that I’m going to be taking one Friday off at the end of the month, six times a year, we run term time only. And that’s really important to me.

[Talks about what she does for the group]

ELAINE: So basically, I let everyone know when the meeting is going to happen. I try and get people to come into, talk to the group. It’s all sorts of subjects. I’ve been going through actually a few sessions to see what we’ve actually done, and we’ve had a mixture of charities that support parents and carers with various issues, to do with schooling, to do with communication, about accessing information.

[Talks about the main purpose of the group]

ELAINE: I think the main purpose of the group, although we always get speakers in is that it is actually a peer support group. So, everybody basically comes to support each other. I think that everyone agrees to actually having children with additional needs is probably the most isolating thing that can ever happen to you. And the idea behind the group is that it makes it so much less isolating when you know that everybody there is actually experiencing the same journey going through the same issues that you’re going through.

[Talks about the benefits the group can impart]

ELAINE: There is a real special bond between people and I’ve had people who dip in and out. Some people come when the diagnosis has happened or are in the process of getting a diagnosis and they access the group for a short time. They get the information they need, they get the support they need and then they feel strong enough to go on their journey. Others come along very regularly and have come for years because they enjoy the camaraderie. Also, there’s always new information coming out, there’s always new groups, organizations that actually can help. I think it’s a shame when people look at the subject matter and then think that would be interesting to me, I’m going to come along and then they look another week and think that’s not going to be much use, so I won’t go. But actually, I think that to reap the benefits of the group its best to come along regularly as you never know who you’re going to meet in that session. Everyone that comes has a real fantastic knowledge and they could impart some valuable information. You just won’t know unless you come along. So almost the subject matter of the speaker is irrelevant in these cases but, you know, it’s obviously, totally voluntary.

[Talks about how she makes the group feel relaxed and cared for]

ELAINE: I never know how many people are going to come each week. I try to get an idea so that I can make sure I buy enough delicious teas and cakes. One of the things I’m always really looking to do is to make people feel cared for and pampered and I’m absolutely insisting that no one makes their tea, no one makes their coffee. I always buy a complete wide range of every single tea that you can possibly imagine which is quite funny. I think everyone finds it amusing but, you know, I just feel that everyone’s worth it. You know, I always get some lovely cakes, always some fruit for those of being trying to be healthy but I just, you know, the whole atmosphere of the group is lovely.

ELAINE: We normally get probably on average about twelve people coming to each session. Sometimes it’s big as much as eighteen or twenty, which for me is a little bit unwieldy, you know, twelve, ten, twelve people is absolutely ideal. And sometimes, we don’t have a speaker. Sometimes they didn’t turn up or I haven’t been able to organize anyone in time.

I know Helen who’s the one that actually started up the group. She loves those sessions. Those are her absolute favorites. We all sit around, and we just chat about what’s going on in our lives, what’s been happening, all that personal stuff. And I think everyone feels comfortable enough for that to happen. Of course, we always have a laugh and we have a cry and you know there are many occasions where we’ve had one or two people in tears for what’s going on in their life. And everyone understands that because actually, that’s what happens. And there’s so much support there.

I think what people have told me is that they’ve really struggled to maintain friendships with when they have children with additional needs. And I think that’s why it is so isolating. And you know I think it must be so confronting for people to realize that who they thought were friends are actually not really friends and not there to support you when you most need them.

DEBRA: What would you say to people that think maybe I don’t really want to share my life story, but I feel isolated, but I don’t want to necessarily share my life story with a group of people I don’t know? Because there must be people that must come along for the first time, are very nervous, and I’m sure that you guys are all very friendly, but you’ve had people get over that and what do they, why should they do it?

ELAINE: Well, they don’t have to. I mean, that’s the whole thing. They really don’t have to. Nobody has to say anything that they don’t feel comfortable with. And you know, when we have a new people, we do like them to introduce themselves, say how many they have children, how many children they have with additional needs, and what age they are, you, what stage in the process they are in their schooling and what difficulties they face. But there’s absolutely no pressure whatsoever to impart any of that information and if they just want to sit there and listen that’s absolutely fine.

And yes, people are often nervous about coming in for the first time and I always encourage people if they are nervous to come with somebody and quite often, they come with a relative and that’s absolutely fine. I would rather they came with three people to support them than didn’t come at all. And that could happen until they might feel comfortable to come on their own. And I like to think that I can make people feel really welcome and relaxed. That’s what I enjoy doing most and to see people relax and actually you know, maybe feel more comfortable is fantastic. Certainly, we have had lots of people who have come to the group and then decided this isn’t for me. That’s absolutely fine.

I probably have about a hundred and thirty people on my mailing list so if you think I may have maybe twelve people coming, that’s not a huge amount. Some people just suddenly turn up after two years and that’s lovely to see them and see how they’ve grown as people and how strong they’ve become and that’s one thing I really admire in all the parents and carers that comes to my group is how strong they are and passionate and devoted and they will do anything to ensure that their children will get the best that they deserve.

DEBRA: What advice would you give someone who seeking about starting up something on this. Let’s ignore the funding a bit because obviously, that’s a big issue but if you’re thinking about doing something like this what kind of things do you need to think about?

ELAINE: I mean it needs always used to be in place that is accessible, easy to find and its warm, clean. I mean one of the things I did after some fundraising was buy some china mugs, so make sure that that’s really nice so that the whole environment is friendly.

I always make sure that the environment is friendly, it’s welcoming, people feel cared for and, I mean as far as the funding is concerned, it’s not hugely expensive. Most of my speakers will come for absolutely nothing. So, the funding really is the hire of the hall and refreshments, basically not a huge amount of money. Everyone’s already said to me that if there was an issue with the funding, they would be quite happy to make a contribution to ensure that the group keeps running and I also know that some people have said to me it’s an absolute lifeline to them. And so, I think it’s really important that the group is maintained. And it is unfortunate there aren’t that many groups around, and it means we get a lot of people from quite a wide area to come to the group. But there aren’t too many challenges to be quite frank, because the people make the group.

DEBRA: In terms of when people are talking about their stories, do you find that sometimes people may be feeling worse after coming to the group rather than better because of what they hear.

ELAINE: I haven’t noticed that happening I feel that people are inspired to hear other people’s stories. I suppose there is a danger when people come to the group and they’re just starting out in their journey and I do know that some people are quite negative about their experience and how hard it’s been. And I think to actually hear about the challenge that is ahead can be very daunting. And that does worry me. But at the end of the day, I think is forewarned is forearmed and I think everyone needs to be prepared for the fight ahead. And it is a fight, it is a fight for everyone. You can’t deny that. Nothing in this world comes easy and nothing is handed to you on a plate.

So, I think it’s great when people come right at the very beginning of their journey because then they know how to go about it. They don’t make as many mistakes. Because I think that’s the good thing about the group is that everyone has so much experience in every single area that they can impart this knowledge to somebody embarking on the journey and basically point out the pitfalls. But the other thing is signposting to organizations that can really help in the journey. And some, I love it when people come, and they come to me and say I had no idea that was out there. That is going to be absolutely brilliant for me. I’m so thankful I came. And you know, it’s often through word of mouth that people come to the group and hear about these organizations.

I just think the reason why I enjoy my job so much is that I meet such fantastic people and it just inspires me and I just think, you know, they’re all just brilliant; the parents, the carers, and everyone that makes the contribution to this highly complex emotional journey that everyone’s on.

DEBRA: Thank you very much, Elaine.

ELAINE: Thank you.

DEBRA: My Key Takeaway – Support groups can provide a space that maybe family and friends can’t fill at least at certain times on our journeys

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