Find Your Community: Improve Your Family Life

When you're raising a neurodivergent child or young person, it can feel as though everyone else has a map while you're finding your own way, sometimes in the dark, without a torch.

 

Whether you're at the beginning of your journey or have years of experience behind you, finding people who understand can make a huge difference. Marine and Sonay founded The Neurodiversity Family Hub on this principle, and it's why our first webinar of the academic year was about how to build your community.

 

Why is community important? 

We want our work to have both an evidence base and the benefit of lived experience, so these were the two starting points for our recent NDF Hub webinar about finding your community.

 

The research is clear: having a community around you is protective. This holds up for parents and carers like us, with social networks and support predicting better parent/carer mental health and wellbeing, regardless of how severe their child’s symptoms are. 

 

We then welcomed three speakers to talk about what they have learned through their lived experience: Annette, Marine and Kate. Because they each have different personalities, resources and contexts, one of the things that came through strongly was that community can look very different for different people.

 

We then discussed where community comes from, how we find people we connect with, and what can make it easier, or harder, to build those connections. 

 

Community can grow in unexpected places 

For some of us, community grows out of the places we are already part of. 

 

Annette talked about how her community developed through her family, neighbours and housing co-op before she had her daughter. When she became a parent, local groups such as Stay and Play gave her opportunities to meet other families. Later, her daughter's school became an important source of connection and information. It was through conversations with other parents that she began to learn more about neurodiversity and eventually found the Neurodiversity Family Hub. 

  

Repeated connections

We talked about research which that repeated connection rather than instant chemistry makes it more likely that a relationship will grow. Sometimes we don't realise we’re already surrounded by the beginnings of a community. 

 

Marine found fellow parents by going to the same park almost every day until she got talking to people. She deepened those relationships by inviting people back to her home for play dates. Eventually she reached the point where she could take a few precious moments for herself in the park, knowing she could ask someone she trusted to keep an eye on her daughter. 

 

Marine and Kate both talked about the power of being in the same place regularly. For Kate it was a local café and a garage shop. For Marine it was her local small supermarket.  These places seem impersonal at first but often you get to know the same staff over years. By the time their children were ready to go somewhere independently, there were local places with staff who knew them and had seen them grow up. 

 

Using the image of a tree, Marine talked about her ‘root community’. These are the people who have known her a long time and who knew her before children. A community that is there for us, as an adult, a separate being from our child, is so important. Perhaps even more so if our child needs extra care and support. Marine purposefully nourishes these relationships with phone calls, texts and meet ups, both to celebrate joys and share challenges. She puts reminders in her calendar so that she keeps up these important connections even when things get busy.  

 

But not every connection needs to be like this and Marine also described her ‘leaf and branch community’. Different people touch us in different ways. While some might offer deep and lasting friendship, others might be good for sharing practical information, some for a laugh, some because they have experiences in common with you and some simply because it's nice to see a friendly face. 

 

What does 'community' look like to you?

When Kate moved to a new area, she thought about the things she wanted from a community, what she could offer and some of the barriers. 

 

What are your thoughts if you ask yourself: 

• What do I need from other people at the moment? 

• What could I offer someone else? 

• What makes connecting difficult for me? 

• Is there one small step I could take? 

 

To make a change we have to take that first step. Keeping it small can make it manageable.

Kate talked about thinking of your step as a ‘little experiment’. Mistakes, failures and successes all provide useful information: does this feel useful? Do I feel comfortable here? Would I like to come back? 

 

Find your own way in 

Not everyone finds social situations easy. Large groups, small talk and unfamiliar places can all be difficult, particularly when you're already tired or overwhelmed. 

 

Sometimes having a role can make connecting easier especially if you don’t enjoy small talk or find it a challenge to make conversation from a cold start. It doesn’t have to be an official role. Tea maker? Bringing the biscuits? Setting out the chairs?  

 

Kate gave some examples from the PTA she was involved with when her children were at primary school. One parent didn't come to PTA meetings or volunteer for school events, but at the end of an event she would be there, with the big broom, helping to clear up when everyone was tired. They were so glad to see her! Another offered to do something from home as she was a working mum, and became the wrapper of lucky dip prizes. Two mums who had a busy wedding catering business would make a huge batch of fresh snacks for any school fair and soon became known to everyone as ‘the samosa ladies’. 

 

If meeting in person is difficult, there are many Facebook and other online groups to connect with people who understand, or you could make use of the NDF Hub WhatsApp group to help you feel connected. It means you can contribute at a time that suits you in the amount of time you have available. Just make sure you find something which is well-moderated. 

 

Community should work both ways 

It can sometimes feel as though we are the person who is always helping: organising things, giving advice, supporting our children and keeping everything going. At other times it can feel as we are too needy, always asking others for support. 

 

Annette talked about community being ‘reciprocal’. Sometimes we have something to give; sometimes we need somebody else to hold things for us for a while.

 

Asking for or offering information, offering or accepting help, telling somebody that you're having a difficult week or listening to someone else tell you about theirs can all be ways of building connection. Think about these things balancing over time rather than in a single interaction.

 

If people don’t know what you’re going through, they can’t help, so sharing is good. But you don’t have to explain everything to anyone who asks. It is good to have boundaries around what you share and who with. Think ahead about something you could bring up to change the subject if necessary or simply say ‘I'd rather not talk about that today’. 

 

It’s okay if connections come and go 

You might find a group that really helps at a particular stage and then stop going. You might lose touch with people when things become difficult. This is how life goes. 

 

One of our participants talked about learning to have more compassion for herself when the things that helped her sometimes fell away. We think that's an important message. 

 

Your community is like a cake 

We talked about community as being a bit like a many-layered cake. 

 

We might first think of people who know and love us – our family and friends. 

 

Then we talked about our everyday communities such as playgroups and people involved in our children’s education. 

 

We might be involved with faith or community groups. Then there are other people we have regular contact with such as in local shops or cafes, libraries, sports activities or youth services. 

 

We might look to our peer community, for both our children and ourselves. The Neurodiversity Family Hub provides clubs for neurodivergent children and young people as well as parent/carer groups, both online and in-person. 

 

Although we might not immediately think of them as part of our community, when you find the right professional who really gets it, this can be a great support. This could be a GP or counsellor. It could be someone who works with your child such as a teacher or SENDCO, CAMHS or social care.

 

Another layer is the people who can support us with rights and advocacy. Locally, you might find this through the Southwark Local Offer, SIAS, or the Disability Hub or through a Parent Carer Needs Assessment. You might also find EHC support from someone like the NDF Hub.

 

No one ‘layer’ can provide everything you need. 

 

Building your layers 

If your community feels a little thin at the moment, don't worry about making the whole cake at once. Start with one layer, a ‘little experiment’. 

 

Think about the people who are already around you. Is there someone you could reconnect with? Somewhere you could try going? Someone you could ask for help? You will always find a warm welcome at our parent/carer events for example, and we can arrange to meet you at the door and introduce you to some people. 

 

Remember to notice what you are already doing, too. When life is challenging, it can be very easy to rush to make improvements without giving yourself credit for everything you have already managed. 

 

Community can start with something very small – a conversation at an NDF Hub coffee morning, a walk, a message to a group WhatsApp.

 

You don't have to do this alone.