Monday, 3 June 2013

Does your child with special needs define you?

In the complex and fast paced world we live in, we all have a variety of roles, a collection of hats from which we choose depending on where we are, who we're with and what we're doing.  When a disabled child becomes part of your family, whether through birth or by other means, things change.  You gain another hat, with CARER emblazoned across the front.  One of the challenges facing organisations such as Bristol Parent Carers, the Bristol based Carers Support Centre as well as the national organisation Carers UK is to promote self identification.  Very simply, this refers to an individual recognising that they are a carer, whether the cared for is a disabled child, a partner with mental health issues, a parent with dementia, or someone else that they support.

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Parent Carers, by default, often take on a wide range of additional hats as time passes ~ advocate, physio, medical expert ~ and sometimes these roles seem to take over as the principle method of relating to the child.  I have a slightly better handle on it now, but during the early years I often wondered when I was going to have the opportunity to be a mum.  I seemed to be using all my time and energy doing all the other stuff, with nothing left over to be a parent.  It is something of a catch~22 situation ~ to follow up every opportunity, to do everything that might help, you simply have no time to be Mum or Dad.  But doesn't every hour stretching and massaging, every book you read, every portage session, every moment doing 'poor mans hydro' in the warm toddler pool, every internet session researching new breakthroughs, every hospital visit full of questions, making notes, every phone call and form and letter  ~ doesn't all of that count?  Of course it does ~ it's all parenting, but sometimes the link doesn't seem as clear as if you were sat on the floor playing peek~a~boo.

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When you become a carer, I think one of the most difficult mental hurdles is the task of balancing that extra hat ~ the carer one ~ with all the others.  Especially at first, when everything is new and unfamiliar and there is so much you need to know, the carer stuff can overshadow all the ordinary stuff, and your own identity can take a backseat to your caring responsibilities.  It's only natural that the hat you wear the majority of the time is the identifying label that sticks to you the strongest, but you have other attributes which impact on the way you relate to yourself and others, some of which, such as gender, are a crucial building block of your sense of identity.

It is the accumulation of these basic building blocks which merge to form our adult identities, but while new elements can be added, it is difficult, or arguably impossible, to get rid of those blocks right down at the bottom without causing damage to the rest of the wall.  Many of us know someone who has had one of those elemental blocks kicked out, and how much that can impact on other, seemingly unrelated aspect of their lives ~ for example I know an individual who discovered in his late fifties that the man who raised him was not in fact his biological father, and that everyone else in his family ~ siblings, aunts, cousins, and so on ~ had all known this.  His identity, founded through childhood by his role as son and  brother and nephew and cousin, suffered significantly because these assumptions were untrue.

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So before you were a carer, you were a child, a son, a sister; you were funny, pretty, clever; you were a friend, a rebel, a confidante; you were dutiful, irresponsible, sensible; you were a swimmer, a reader, a telly~addict; you were a boyfriend, a lover, a cheater.  All the labels you have ever been impact on the person you are today, and carer is among these.

As a carer (of your child, your partner, your parent), you have power.  You have control.  You are in charge.  You hold the information.  Your caring role can take up significant amounts of your time and energy, which is why sometimes it can feel that all you are is a carer, and everything else drops away.  But to recognise the entirety of your personal experience, these other labels hold massive significance.  They are you, and while it is important to acknowledge that you are a carer, it is equally important to realise that this is just one element of your identity, and you are still all those other elements too ~ a son, a sister, a friend, a rebel, a swimmer, a telly~addict, a cheater, a lover.

Do you feel you are defined by one hat more than others?  Does it seem your caring responsibilities sometimes overshadow your parenting ones?  Or am I barking up the wrong tree ~ have you naturally blended your roles together without feeling overwhelmed or under informed?  Please, let me know what your experience and views are.


  1. I have always referred to myself as mum to my sons but more recently have come across this new label of carer. As some very good friends once said labels are for jars not people, but I have come to realise sometimes accepting a label can be the key that is needed to unlock doors; doors that lead you to useful information which can help you make informed choices, doors that lead you to support that helps you continue to care and remain strong yourself. That is why I have now accepted the label of carer.

  2. That's a really good point Wendy, thank you so much for contributing. I know exactly what you mean ~ although it may feel irritating (and even demeaning at times) to allow ourselves to be labelled ~ after all we are all so much more complex than just a couple of labels ~ at times these single word basic labels are necessary to open those doors. I tend to describe myself as 'playing the game' ~ if acknowledging the pigeon holes they (social workers, schools, etc etc) choose to put me / my son / my family in means there are positive repercussions for us ~ well, I'm okay with that. I hope accepting the carer label has helped you access the support you are entitled to.
    Thanks for reading Wendy, and for commenting.
    Take care


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