When a child has special needs, they inevitably get a lot of attention. Even the term “special needs” singles them out as needing different treatment, BETTER treatment, more support than a typical child, when the reality is that all our children have “needs”. Often, to a sibling, it must feel like the world revolves around them whilst you fall into second place.
With Marigold, there is not only the attention she requires as a child with special needs. Through her story, I have become a disability advocate, raising awareness for those affected by rare chromosome disorders. It started off with this blog, a few published articles, then a TV appearance, then she was signed by Zebedee Management, the specialist talent agency for diverse representation who break barriers and change perceptions around disability. She has her own Instagram page (marigold_zebedee) 500 followers who are now on her journey with us and a mother who constantly follows her around like the paparazzi. She has her own hashtag – #marigoldfriday. She has professional headshots. The local photography studio have named a package after her, called “Little Stars’. And of course, that is exactly what she is and I am constantly in awe of how she deals with life in the face of her disability, with such strength and determination, always with a smile on her face (well, almost always).
But really, there is an unsung hero in her journey. As those of you who follow this blog know, I have written about it before, many times, but I will write about it again, because it is a story that never ever gets old.
Having a child with a rare chromosome disorder is a difficult journey. Navigating a world that still has so far to go in terms of disability awareness and inclusion remains a challenge. As I always say, I would not change my girl for the world: but I want to change the world for her.
But there are silver linings. And one of these is the incredible bond between her and her big brother. He plays many roles in her life. First and foremost, he is her best friend: the person who will always swoop in to make her laugh in a crisis scenario. He is her therapist: the person who communicates best with her and helps her to learn through play. He is her champion: the person who shouts loudest about her achievements. As he grows up, I can see his friends start to question him about Marigold. Once, when none of his friends remarked that Marigold didn’t speak, I heard him retaliate that she may not speak, but she can sign loads, loves books, understands lots and is really very clever. Because this is simply how he sees her. Whilst he knows she is a ‘child in need” as he always calls it (bless), he also sees her strength, her perseverance, her intelligence despite her learning disability, her sweetness. He is without a doubt, her biggest fan.
But he also sees the struggle. The sickness. The therapies. The relentless hospital appointments. The parents who rant against a broken and unsupportive system. He is exposed to adult conversations a little person his age should never really have to listen to. At the moment, we are discussing a possible house move. He doesn’t want to move from a home he loves, but we are trying to plan for the future and ensure we have enough space for a child who may never live independently. And the onus of responsibility for him to care for his sister exceeds that of a typical sibling relationship, because she needs so much more care. “Watch your sister” means so much more when your sister is vulnerable in so many ways.
And somewhere in all of this, the seed of realisation is growing. That one day, hopefully in the very distant and far off future, there may be a day when his sister becomes his responsibility.
It’s a lot to take on.
The reality is that we are all likely to become carers at some point in our lives. There are around seven million carers in the UK – that’s one in ten. And it is only set to rise. One in three people will become a carer in the UK: a middle-aged man caring for a wife with cancer; a 70 year-old woman looking after her husband with dementia; a teenager caring for a parent with mental health issues or a young man caring for his learning disabled sister. We never know when disability will strike and what form it might take.
Today is Young Carer’s Awareness Day 2019 and this year there is particular focus on the mental health of children in caring roles. Young carers and young adult carers suffer greatly in terms of mental health due to the pressures of their caring role, and all too often, the mental health support is just not there. Even when support is available, their situation is often made worse by people, and professionals, who don’t understand the specific challenges and difficulties faced by young people as a result of their role. This year’s campaign #careformetoo is the hashtag to raise awareness for all those young people who are in caring roles, to appeal to those in positions who can make a difference – politicians, commissioners and service providers – so that they pledge action to support young carers with their mental health. Because caring for another, to devote so much of yourself to caring for those who are more vulnerable is one of the most important things you can do in this life. So it is time we recognised, value and supported this – especially with those who are children themselves. Our son is lucky in that he has us to provide him with the tools and the resources for one day when he might find himself in this position. But so many are not.
So take a look around on Young Carers Awareness Day to see if you know any young people in caring roles and think what small thing you might be able to do, so they feel like they are being cared for too.
And to our son, I say we are equipping him with the tools and resources, but really, he is doing it all by himself. So today is not a day for me to massively lose my rag over lost PE kit or sleeping too late (which, honestly I never do). Today is a day for celebrating his devotion and care for his sister. A day for guilt-free Haribo, burgers and popcorn. A day for telling him what a marvellous little person he is, and how very much he is cared for too.
Sources and support
Carers Trust is a major charity for, with and about carers working to improve support, services and recognition for anyone living with the challenges of caring, unpaid, for a family member or friend who is ill, frail, disabled or has mental health or addiction problems. Each year Carers Trust organises Young Carers Awareness Day to raise public awareness of the challenges faced by young people because of their caring role, and to campaign for greater support for young carers and their needs: https://carers.org/
Unique is a charity supporting, informing and networking with families living with a Rare Chromosome Disorder or some Autosomal Dominant Gene Disorders associated with learning disability and development delay, among other symptoms. Does this sound like your family? Then contact Unique on www.rarechromo.org
Zebedee Management are a specialist talent agency specialising in diverse representation and redefining the perception of beauty, disability and diversity. If you are a brand looking to embrace diverse representation and feature some of Zebedee’s amazing talent, check out some of their stars on www.zebedeemanagement.co.uk