HLN Meets: The Special Lioness
We meet Claire Stewart and Amy Howes, who decided to set up their own charity in Sunderland after holes in the support system for families with SEND children meant that many were falling through the cracks...
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.
How do you offer this support?
Claire: We’ve created an environment of support, understanding, compassion and knowledge. But above all else, care – something we wished we had in the early days when we were faced with life with a disabled child. We have a wonderful coffee group where parents, carers, family and friends get together for a chat and a laugh. Now and again there are tears, but from those tears come strength.
Amy: We aim to provide a place to let off steam and just be around people who truly ‘get it’ – who know what our lives really look like, and understand the stress that no-one else will. We come together to give ourselves a few hours to be ‘me’ again, and not X’s mum/dad/carer.
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.
Why did you set the charity up yourself, rather than seek help from an established charity?
Claire: Every other charity (that we are aware of) requires an official diagnosis of your child, or for you to meet a specific financial criteria. We know from experience that our children can’t be pigeon-holed. For example, Amy’s daughter, Aoife, is still undiagnosed at the age of 7, so she doesn’t fit the criteria for most charitable organisations. In a similar way, a few of our members children have multiple diagnosis, so they feel like that don’t fit into any one specific charity.
Amy: We have one child in The Special Lioness network who has Down Syndrome and Autism. Their parent felt isolated at Down Syndrome-specific groups, as her experience was completely different to the other parents there; likewise, at Autism-focused groups, her experience was completely unique. We felt it was important to be completely inclusive – whether the child has a diagnosis, a behavioural need or a physical need, is a wheelchair user or is fully mobile, is visually or hearing impaired, we try so hard to simply welcome each family on their own, wonderfully-made merits.
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.
What challenges has COVID thrown at The Special Lioness?
Claire: COVID has affected us more, perhaps, than other charities. Yes, as with other charities, our funding streams have dried up. But what I think a lot of people don’t realise about us is that we’re also full-time carers for our own disabled children, both of whom are clinically extremely vulnerable and medically fragile. So we’ve had to shield our whole family throughout the pandemic. That’s made growing the charity very difficult.
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.
But you didn’t just create packages for the children in The Special Lioness network?
Claire: We were also contacted be a few members telling us about job losses, financial difficulties or their struggle just to afford Christmas last year, so we pulled together over 50 care packs filled with basic food items, Christmas goodies, gifts and toiletries. We’ve continued the packages so far this year too.
Amy: We were also seeing a need for more technology during the pandemic, with children being home-schooled and hospital appointments being moved online. We secured funding from The National Lottery to enable us to provide tablets to our families and have an IT Specialist, who carries out repairs, fault finding and IT support whenever it’s required – with all costs covered by The Special Lioness.
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.
You say on your website that knowledge is power. What’s something you wish more people knew about life with a disabled child?
Claire: There are a few things we’d love more people to understand about life with a disabled child:
- Our children are worthy! Worthy of time, effort, love and care.
- Our children have the biggest hearts. They only seek smiles and acceptance.
- Our children turn us into better people – patient, selfless, sometimes tough warriors.
- Please don’t tell us we are ‘amazing’ – we don’t have a choice. You would do the same for your child.
- Say ‘hello’, smile and look at our children, but please don’t stare! And please don’t be afraid to speak to our child – even if they are non-verbal, they can still hear you and/or see you.
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!
What are your dreams for the future of The Special Lioness?
Amy: We want to keep pushing the boundaries of what is accessible to SEND children, to adapt and create events that are within reach. These children should be able to experience everything that any other child can – steps, ramps, sounds or lights shouldn’t be obstacles.
Claire: Our long-term goal would be to have our own premises – somewhere we can have parents and carers to drop in anytime they need support or just a friendly face; somewhere to bring their children where it’s safe to play and explore; somewhere for friends to build relationships and a space to run our own events. Whether that’s our play and craft groups, a party or a place to hold information gathering sessions for parents and carers with professionals.