Those of us who are carers, or have perhaps seen our parents care for their parents, have an understanding of the relentless struggle it brings. The physical, behavioural and emotional needs of the loved one we care for are often enormous.
It seems even more daunting and - let's be honest - unfair, when that brutal caring responsibility begins with, or shortly after, the start of motherhood. In other words, caring for your own child. Of course we all care for our children, but I mean care with a capital ‘C’. The naïve idyll you imagined with the tiny life you brought into the world disappears; your hopes, dreams and expectations for a delightful childhood, tempestuous adolescence and, within a couple of decades, a ceremonial flight into the world of independent adulthood, literally crashes around your ears.
It's a physical experience when your world caves-in. You actually feel your whole being jolt, go cold and spin. Your future flashes before your eyes and screams off into the distance – the future you know deep, deep inside, you will never have.
Gradually, as a mother of a child with additional needs or disabilities, you accept your child's difficulties, and willingly make the necessary sacrifices. Motherhood brings strengths and reserves many of us had no idea we were capable of.
But why mothers? Are fathers not equally capable of unconditional love for a child? Of course they are. Is the internal growl of a mother stronger in terms of protecting her defenceless, needy new-born? And because those needs continue due to disability, does the powerful caring bond intensify? Perhaps it's the societal pressure for men to be the breadwinner and work full-time? Or is it simply more acceptable for mothers to be ‘Carers’?
When a child has a disability, research shows that mothers reduce workplace commitments, while fathers tend to withdraw from family to invest more in their jobs. If mothers give up work, families rely on one salary and the wage-earning partner tends to work long hours, which further polarises childcare responsibilities.
As Professor Traustadottir, of the University of Iceland observes: “There is a pervading sense that the impact of disability is minimal if it only limits the mother.” Somehow it seems okay to put unbearable strain on mothers, impact on their health, well-being and careers, expect them to be self-sacrificing, downtrodden, and exhausted - and to be happy about it. If you call out for help there is very little there - respite is patchy and infrequent. If you admit you are struggling or feeling depressed, the spectre of social services looms. Am I being over dramatic? Perhaps. I haven't experienced all of this - but I know of mothers who have.
There is something disingenuous about the very term: ‘carer’. When we talk about ‘working mums’ or ‘stay at home mums’, we acknowledge the role of the woman. But when a child has additional needs, government, professionals, society and even mothers themselves use gender-neutral terms, which obscure women's primary role in care giving - and the high costs they bear.
I have certainly lost my own identity in all this - there is a sense that I am carer first, then mother, then me. I admit it - I am confused about where carer stops and mother begins. I am even more at a loss to find my own self in all this – she was lost years ago and stayed that way for some time. Only now am I beginning to have dreams and aspirations of my own again. I feel guilty about it - real, mind-bending, conflicted guilt. All the time. Am I letting my children down, my marriage down and now my business down? But, finally after seven years, I have found that I must do something that is ‘me’.
‘Me’. Ouch, there's the guilt creeping in again. It's not easy or straightforward – it's like walking a tightrope every day. It feels scary and out-of-control - but it's also enormously liberating and makes me feel alive to the tips of my toes.
I know, though, that I have been one of the 'lucky ones'. I've been able to regain a sense of self through setting up Rosy & Bo - but it has only been possible for me with the help of family and my co-founders. There are many, many women with children with additional needs who cannot imagine being able to find the time, the energy, the financial wherewithal to do what I've done. Somehow, we must find a way to support them, to recognise their strength, their determination and resilience and the attributes they bring to work - and help them to build an identity beyond that of carer.
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When a child has additional needs, why do we assume that the mother will be the carer?
MumsnetGuestPosts · 07/02/2014 14:54
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Thank you HereComes and everyone who has been so nice on this thread.. I feel I actually went off on a bit of a tangent in my first post 
but it all just sort of came out..
My husband has an autistic son from his previous marriage. From what I can tell from his reports of that time, he was competent as a father simply because his wife didn't do the things he thought necessary, like putting the kids to bed instead of letting them fall asleep on the sofa, etc. (But only things that were getting in the way of 'easy living' as far as I can tell!)
However, once married to me he obviously realised that if he left it all to me I would do everything... typical motherly response I guess? It's definitely laziness on his part. Now that we have 3 young kids (two being twins) and after a lot of prodding he is a bit more pro-active with the children but still does as little as he sees necessary.
What's sadder is that his SN son hardly sees him - maybe because he's not a necessary part of his care any more (he used to stay with us every other weekend but that became impossible with our young children vs a very large and rather aggressive sn child, then he was moved to residential care), and definitely because there are other people to work around (re the people at his residential care). Whenever I challenge DH about it or suggest he fixes a twice- or even just once-a-month date to visit in order that it won't get forgotten, he just says, "yes, i know" but never actually does anything.
Priorities and laziness. 
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