Parent Rep for Nottingham, Oxfordshire and Berkshire, Helen Dennehy, tells us what it's like to help out on a SWAN UK stand.
The first stand I did was at Mansfield football ground to a group of parent carers a couple of years ago. I’ve since done stands for SWAN UK at Kidz to Adultz South, Kidz to Adultz Middle, RCPCH annual conference, King’s Mill Hospital and Nottingham’s Rainbow Parent Carers’ Forum annual conference.
Basically, talking! Sometimes visitors to the stand may not know what ‘undiagnosed’ means and sometimes families don’t know if or why they should join, so I talk to them and find it helpful to give my son Steven as an example as it helps opens up the conversation further. I explain that I would have classified Steven as ‘diagnosed’ in the beginning as he has lots of individual issues, but after seeing a social media post years ago on Undiagnosed Children’s Day, I realised that that was Steven – he has no overall diagnosis.
I enjoy meeting professionals and parents and giving them information. I think because I went so long without knowing that there was any help out there it feels good to be able to tell others that there is support. It’s also a good way to make connections with other organisations and find some resources that help you personally, for instance I’ve found quite a few activities that Steven can take part in with other organisations from doing these stands.
If I sign up just one member I feel really proud of myself because I’ve managed to help that one person by getting the word out about SWAN UK.
Even when an event is quiet, you still get people looking at the SWAN UK banner and that makes me feel good. Doing a stand is also great for getting your family involved too. I take my daughter Chloe along now and Steven helps put stickers in leaflets which he loves. Sometimes I find taking Chloe along with me when it’s busy is nice as she gets to talk about what it’s like to have a sibling with an undiagnosed genetic condition.
I lost confidence when I had Steven as I had to give up full-time work so my confidence took a nose-dive. I’d always worked in customer services so I’ve been able to bring some of what I’ve learnt to organise and man information stands. I’ve been rebuilding my confidence because I felt I’d given up too much. Doing the stands has made me feel like I’d become ‘Helen’ again. Before, I was known as ‘boy with the tube’s mum’/’Steven’s mum/’Chloe’s mum’.
It’s also great to be able to make links with professionals. The type of events where we have stands are important as when we talk with professionals in a casual setting they are more open to talking as they aren’t in such a rush. After a while you get an idea of who you can pester and who you can’t.
I get a boost after doing the stands and think, ‘wow I’ve just done that!’
Manning a stand is about being open and enjoying what you’re talking about it. If you don’t enjoy it, that will come across. Go along with someone first to get confidence. The first time I did a stand I went with SWAN UK’s Parent Rep for Nottingham, Jo Burt, to Rainbow Parent Carers Forum Conference in Nottinghamshire and it gave me confidence. Anyone can do a stand and although the first one is always scary, I find that once you start talking to the first person you feel more comfortable. I’m still gaining confidence every time I do one and I love it which is why I keep putting myself down for more and more!
It’s always helpful when doing a stand with another parent of an undiagnosed child as we’re able to give our own personal experience examples.
I helped Jo at a stand and was so nervous about going there but I found that other people put me at ease.
It’s hard to coordinate and I manage with help from my family and carer. I work around Steven’s hospital appointments and I have to rely on my mum when I need to go further afield but she can see how much I enjoy it so it helps.
I can’t remember how I got through first one – I needed reassurance. Just know that what you are doing is so helpful. I’m one of the most unconfident people but this helps me with the confidence and even when you have those moments, some people will just come over and talk and you’ll make a connection. You also start seeing some of the same people at events which is reassuring.
I’ve already got next one planned! I want to start doing other things too like doing talks to professionals which will take more courage.