'My Story' by NI4Kids
Thirteen-year-old Meabh Bradley from Glenavy suffers from a condition called Spastic quadriplegia, a subset of spastic cerebral palsy that affects all four limbs.
Her dad Vincent recently gave NI4Kids an insight into family life living with such a severe disability, and how Meabh’s mischievous personality – not to mention a passion for Strictly Come Dancing – shines through.
“After Meabh was born, she was kept in the hospital for six weeks and we were told from day one were that she was going to be very disabled. The full extent of it maybe wasn’t realised until we were a few years down the line, but we did know we were headed that way.
Getting used to the idea of having a disabled child is difficult. It happens very suddenly, and it takes a lot of getting your head round. Your life does change, totally, there’s no denying that. Our other children were six and three when Meabh was born, so there was a major impact to our family and our working lives. I worked in a library, as well as having another part-time job, and my wife Marian is a university lecturer – that changed as she developed.
Meabh’s condition is complicated in that she can do nothing for herself. We have to feed her, we have to dress her, we basically have to do everything for her. She wouldn’t be able to operate her own wheelchair for instance because she doesn’t have those fine motor skills.
Feeding Meabh can be a major issue. A meal will take half an hour, minimum. She can’t use her hands to feed herself, she can’t chew and she has trouble with her swallow, so all her liquids have to be blended and thickened to the consistency of custard. Because feeding is such a long process, we have to put sachets of extra calories into all her meals and to be careful not to let the process go on too long – otherwise she’s using up so much energy that it’s counterproductive.
Without doubt, though, the biggest challenge we have had to face with Meabh is that she doesn’t have any speech.
She communicates via a book filled with symbols, which we realised she could use almost by accident, when she was around four or five-years-old. During a visit with an occupational therapist at a summer scheme she attended, all of a sudden she started to shake and nod her head. Once we knew that meant she could tell us yes or no – and she was responding to her environment – that told us her brain was working well and that she was thinking. From that the therapist knew we had loads of possibilities, so we were able to build on her vocabulary. Over the past five years, it’s developed further so that she can look in the direction of a symbol and confirm that that’s what she wants to talk about by nodding her head.
Her lack of speech makes it difficult to test her knowledge, but we do know she is definitely tuned in, any teacher will tell you she is very bright.
If there is someone that knows how to use her communication book with her, she can communicate an awful lot. She is a very cognitive and clever child and can communicate her feelings and her emotions. She is very emotionally intelligent.
She’s also very mischievous and has a great sense of humour. Once you get to know her, you can have a real laugh with her. One of her big loves in life is Strictly Come Dancing, especially Anton du Beke and Brendan Cole. We have watched the show together as a family for maybe the last eight years. She has pages in her book dedicated to the stars of each season so she can chat with her therapists about her interests and what’s happening in the show.
My wife and I, right from the beginning, talked about how important it is to build her confidence. For the first few years she clung to us, and we see so many parents who are never really able to lose that clinginess and let their child go. We wanted to Meabh to have opportunities to socialise, and working with her school, Fleming Fulton, and recently with charity group Autonomie has been so useful. Fleming Fulton have all the resources she needs on-site, as well as physiotherapists, occupational therapists, and speech therapists, which is such a major bonus.
Currently, with Autonomie, she is taking part in a six-week programme at a youth centre. They have helpers there who know how to use the communication books or are not afraid of speaking to children and connecting with them. She is happy to go (and she gets two hours away from me!) which is great for her. Building her confidence in that way and socialising, being a normal 13-year-old talking about music and all the things she is interested in is fantastic.
Youth disability charity Autonomie is the new name for The Lilac Service. The award-winning organisation, which is entirely run by volunteers, delivers a wide range of services and empowers young people with additional needs to develop the skills to live independently and reach their potential. The charity has also helped over 250 disabled young people successfully integrate into 80 schools across Northern Ireland.
Belfast-based Autonomie recently welcomed multi-million-selling author and artist Oliver Jeffers, best known for his genius picture books, as their Patron. To celebrate his new role at the charity Jeffers – who grew up in North Belfast – created a poignant illustration of a caped superhero boy and a wheelchair in a bid to raise awareness of disability in young people and tackle perceptions people may have. Speaking about his new role Jeffers said: “I believe Autonomie can make a big difference to a lot of young people. My mum had MS and my dad worked for 27 years in a school for kids with disabilities. I know firsthand some of the problems that a lot of people have to deal with, challenges like social exclusion, isolation, various forms of discrimination and a lack of opportunity in the workplace.”
The charity is urging local families with a disabled child to seek grant assistance for items like clothing, sensory toys and even family breaks from UK awarding body Family Fund. Family Fund is the UK’s largest provider of grants to families with disabled or seriously ill children. A spokesperson said: “I t has come to our attention that some families in Northern Ireland wrongly believe that Family Fund is currently closed for applications for grants. We want families to know that we are very much open for applications and would welcome these.”
Eligible families can download an application form, along with further details on applying, at familyfund.org.uk
For more information on the full range of services offered by Autonomie including the Freedom2Choose programme visit: autonomie.org.uk
Story published by NI4Kids and is available to read here