HLN Meets: The Special Lioness

How did The Special Lioness start out?

Claire: We started The Special Lioness as a support group in Sunderland back in 2017. It has been built on a friendship which emerged from our children and the similar situations we found ourselves in, after discovering we had similar struggles within the SEND (Special Educational Needs and Disabilities) world – the frustrations in dealing with the constant services and pitfalls within the system. Amy and I bonded over our humour and the instant connection our children had towards one another.

Amy: The charity is all about sharing information and supporting other families in similar situations, with the hope of helping parents and carers navigate the system and services without falling into the pitfalls and never-ending circles we found ourselves in. We wanted to help alleviate some of the isolation and loneliness, ease some of those sleepless nights, and stop the endless searching for equipment and services which seemed so out of reach.

The Special Lioness also helps families create special memories together – can you tell us more about how you do that?

Claire: We’ve developed a play and craft group – in which we provide a safe, accessible and welcoming space for the whole family to come together and chat, play, create, laugh, sing, whatever they need. Again, the coffee is always hot and the cake it is always fresh! For a lot of our members, this is the only space they feel comfortable bringing their SEND children without fear of stares, questions, pointing and the very unwelcome suggestions from people who have no idea about our children.

Amy: We also organise events and parties, days out and activities that would normally be inaccessible for our members – whether that’s down to lack of wheelchair access, no appropriate toileting facilities, inappropriate activities or a lack of understanding around difficult behaviours.  We charter an adapted catamaran to take out the whole family, for example; we hire entire bowling alleys, we’ve hosted a masquerade ball and have created wonderful Christmas memories.

One of the often underestimated challenges of being a family with a SEND child is the potential exclusion of their siblings. Is this something you address?

Amy: Definitely, a big part of our identity is that we welcome siblings into our world.  A lot of other charities are for the SEND child only. Claire has three children (one of whom has profound disabilities), and a husband who works away from home – it was so difficult for her to try and arrange for Bailey to go to a SEND-focused activity and leave Ethan and Charlotte with a family member, or vice versa

Claire: Our main ethos is about making memories, and this should be with the whole family. Siblings need the chance to make lifelong memories with each other, especially while they are all well enough to participate.

But you’re still supporting other families – tell us about the packages you’ve been delivering through lockdown.

Claire: They started when we realised our children wouldn’t be experiencing the build up to Easter – and all the lovely crafts, messy play and stimulation that brings. So we pulled together 30 treat bags, which contained Easter bonnets and plenty of items to decorate them with, together with colouring pens, playdoh and other sensory-based items, and distributed them to families in The Special Lioness network.

Amy: The feedback was incredible. For parents struggling to find the time, funds or resources to get these items for their children, the packages were a welcome treat. So since then we’ve created summer packs, Halloween-themed pumpkin carving packs and Christmas stockings.

What’s the reality of life with a SEND child during a global pandemic?

Amy: Families with disabled children have faced an incredibly difficult year, more so than anyone would realise – from having to shield our medically-vulnerable children for over a year now, to having no access to our medical team and the support network that helps us day-to-day. Our respite has disappeared, and the impact on our own health and wellbeing had greatly increased.

Claire: Most people within the NHS have been reallocated to assist with COVID – which we fully understand, but it leaves us caring for children who we’re not professionally trained to care for. We become the temporary expert for our child’s health, and to carry that burden alone for 12 months is terrifying. And that impacts the full family too – my other two children are both experiencing their own mental health issues as they’re in constant fear of ‘bringing COVID home’ from school, knowing the devastating consequences that would have for their brother. Their innocence has been stripped away during this time and they’re finding the re-opening of the world to be a scary concept.

How can we support The Special Lioness? 

Amy: We don’t necessarily want financial support, although that does help. We want support in terms of raising awareness – we want to reach more families that need our help.  So please just keep sharing our message!