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MumsnetGuestPosts (MNHQ) Fri 07-Feb-14 14:54:12

When a child has additional needs, why do we assume that the mother will be the carer?

It tends to be the mother who takes on the role of carer when a child has additional needs. In this candid post, MN blogger Hannah Postgate considers the impact caring for her daughter has had on her aspirations and sense of self - and ponders when she gets to be 'mum' before 'carer'.

Hannah Postgate

Rosy & Bo

Posted on: Fri 07-Feb-14 14:54:12


Lead photo

'There is a sense that I am carer first, then mother'.

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’?

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.

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.

By Hannah Postgate

Twitter: @rosyandbo

Honeysweet Fri 07-Feb-14 18:29:45

It requires men to take over. And they dont?

bishboschone Fri 07-Feb-14 18:39:15

I'm my sons carer because I want to be . I chose to have a child who turned out to have sn . It's my choice and I must deal with the consequences of that .

lookdeepintotheparka Fri 07-Feb-14 19:22:34

Interesting. I feel lucky in that although I have definitely sacrificed my career to care for my DD, I can still work a few hours because my DH has dropped a day a week at work. I still couldn't quite 'trust' him to remember to do the daily physio and work on certain aspects of her development though! I guess like pp said, I'm her main carer because I want to be.

colditz Fri 07-Feb-14 19:23:06

In many cases, It's because the only other option is the father and he usually just ... Doesn't. They get mired in denial ("he's fine") and laziness. The mother steps up the the plate because that, historically, is what mothers have done since the beginning of time.

YoureBeingASillyBilly Fri 07-Feb-14 19:27:29

this isn't just the case for children with additional needs. most of the time when children are born, the mother is the primary carer til the dcs are old enough to not need a carer.

mymatemax Fri 07-Feb-14 19:53:33

IMHO it is no different to the role of the parent with a child without SN, in the majority of cases its the father who is out at so the mum picks up the daily parenting stuff.
When the child has SN there is just more stuff.

If my husband comes to hospital appnts/therapy/school etc it means taking time off work etc.
My work has evolved around my parental role, its just the way it is & I wouldn't want it any other way.

morethanpotatoprints Fri 07-Feb-14 19:56:45

I think its a matter of earning potential in many families and unfortunately a lot of the time that happens to be the man.
I do know a few carers who are men and through his work my ds1 has met several too.
I'm not sure it is always down to the woman, maybe more women carers but this doesn't mean to say its a natural default.

AliceinWinterWonderland Fri 07-Feb-14 20:07:13

I had the higher earning potential, and yet I still was the one that stayed home to be the carer. Which meant we were on a very low income. But DH couldn't cope - we've separated now, but he still does not have his head around DS1's disabilities and cannot seem to coordinate his care sensibly or safely. I suspect there's a strong vein of denial there.

bishboschone Fri 07-Feb-14 20:13:43

My dh is the highest earner but if he wasn't I'm not sure what we would do as he wouldn't have coped with ds but he wouldn't have coped with nt dd either . It's just not in him so we knew that pre children . He is a fab dh and dad but not full time .

BlackLabrador Fri 07-Feb-14 21:02:09

I'm tempted to say I think I've done the whole spectrum.. But I suspect I haven't.. I feel there's some much more to come as my child (with additional needs) moves out of childhood into adulthood.

I love him fiercely and constantly.. Not more than my others but I admit, differently. I've gone from living my life for him, to the detriment of everyone else, trying to cope with his relentless needs.. Not without help because there's no way that could have happened - to finally surrendering him to residential school where at first he came home every weekend and then finally became a 52 week boarder who comes home occasionally. But to say I've relinquished his care would be wrong.. I'm constantly involved.. I've retained parental responsibility.. I think about him 24/7 wherever I am, whatever I'm doing. I just don't physically DO all the care.. Or hardly any of it... Anymore.

And I'm mired in dreadful crippling guilt that I don't admit the extent of to anyone. He had become unmanageable in the home despite our v best efforts for a v long time. To not have him living at home was unthinkable to me for the longest time but I love my daughter too.. And she was traumatised and sometimes physically brutalised (I was physically hurt daily but when it's one of your children it's so my h worse). We couldn't keep him safe.. Couldn't get any sleep... Were exhausted in a way that only 12 years of coping can create..Couldn't get social services to properly take it seriously (despite the many documented incidents from settings other than home) because he didn't do the worst of it in their presence. It was all wrong in so many levels.. Eg for him to lose control like that daily and crave a structure a family home, regardless of the many adaptions and sacrifices of any kind of attempt at normal life, just can't provide.

Now he's calm.. Happy.. Looks forward joyfully to his weekend visits from mummy and daddy, siblings and friends and even more to home visits which are such a novelty that his behaviour is better than manageable. He's making progress in the classroom for the first time in years now that we are not all simply attempting to "manage" him and are able to nurture him again. He has a visual plan with all his visits in, saying who is coming when and what's happening and he thrives on this. He has constant one to one input and changing shifts of staff, all special people he has built up lovely relationships with. It's a lovely school and residence and I know he is where he needs to be.

But it's only been a few months and I still feel like something's been amputated. I crave the sound of him, the smell of his skin the way a mother does with a much younger child because he had remained my baby in many ways. Christmas was only tolerable by wearing a smiley mask for everyone else in the family.

To say I miss him is the worst understatement but there isn't any other way and because it's right for him I can endure it. People have judged us as a family but they haven't lived it so I try to shrug it off. There but for the grace of God whether they know it it not...

RightRoyalPainInTheArse Fri 07-Feb-14 21:20:24

Message withdrawn at poster's request.

GobbySadcase Fri 07-Feb-14 21:35:08

Well both me and DH are carers so we buck the norm then,,,

BlackLabrador Fri 07-Feb-14 21:35:55

Thank you RightRoyal.. It's an amazing how much a kind word from a stranger means

RightRoyalPainInTheArse Fri 07-Feb-14 22:48:13

Message withdrawn at poster's request.

CouthyMow Fri 07-Feb-14 22:59:17

I have 4 DC's. ALL have either medical problems, chronic health conditions, disabilities etc.

The healthiest 'just' has epilepsy...

My Ex partner and I share the Caring responsibilities for the youngest two DC's (older two aren't his, but he helps where he can) around 60/40. I do a bit more, despite being disabled myself, but Ex works FT.

Outside his work hours, he does as much of the Caring as I do.

BUT it's taken us being apart for over two years for it to get to that point.

When 10yo DS2, Ex's first DC, was dxd with his disabilities, Ex did nothing. I've slowly trained him, and now he is finally starting yo be able to even manage sensory therapy appointments with DS3 without me there.

I DO still do all the organisation, and the majority of appointments, but that's because he is usually at work.

And if he didn't work, I wouldn't get maintenance, and without the maintenance, I'd not be able to afford all the additional costs of DS2's and DS3's disabilities.

It works for us, now.

I'm having a bad week, health wise, so Ex has taken DS2 & DS3 to his a day early, after a full day at work. They will gone back Sunday evening.

So Caring CAN be shared, but I believe it takes a good DECADE to get SOME men 'up to speed' with all that is involved in Caring for someone. Certainly has with my Ex...

CouthyMow Fri 07-Feb-14 23:02:36

BlackLab - my DD (SN's) is currently in temporary FC. I understand EXACTLY how you are feeling.

CouthyMow Fri 07-Feb-14 23:08:42

And Ex DOES often use his work as an 'escape', and does need to be pulled up on it regularly.

Tbh, it's only since my health has started to fail dramatically, after almost 16 years of Caring for DD, with almost no outside support, that he has started to take on more of the Caring responsibilities for DS2 & DS3.

Maybe I see what he DOES do as ok, because it's far more than he used to, but if I'm honest, it's NOT 60/40...I don't think he's ever tried to book appointments, other than the Sensory needs thing, he only attends about 1/6 of the hospital appointments, he hasn't attended any IEP / statementing meetings for DS2 or DS3, he barely touches the housework, but he IS now helping with the 3 x daily Physio for DS2 and 2 x daily Physio for DS3, and taking on more of the actual 'looking after' DS3, as DS3 needs 1-2-1 24/7 really.

BlackLabrador Fri 07-Feb-14 23:29:58

Couthy.. It's another world isn't it.. One you never wanted to inhabit.. Easier physically than having them at home but so so much harder, emotionally. Torture in many ways.

I fear I've missed the point of the thread somewhat.. shock. Once upon a time xH and I were a team where DS was concerned.. But even if we were still together I think DS's needs would have surpassed our team efforts some time ago. Puberty took everything to a whole new level. Back in the day, xH didn't work and possibly did the lions share of the physical care in the home for some time (mainly pre violent stage.. DS not xH!) although I did all the planning, arranging, running around and appointments as well as the campaigning and fighting for services and provision (everything was a battle). However he found time to get up to all sorts if extra natural activities online which eventually led to other stuff which, when I couldn't endure it anymore, ended the marriage. If you were to ask him today (happily remarried and involved with DS and DD.. But "in the background" so to speak albeit v structured for DS as it all has to be on his visual plan) he'd say it was the STRESS of caring for DS that LED to the unfaithful behaviour. Hmmm..

These days I have a DP who has, when DS when still at home, gone above and beyond the line of a partners "duty" re DS and not without some resentment (understandable given the violence) but these days has virtually bowed out (also understandable I guess.. He's not his father and it's no "normal" situation..).

BlackLabrador Fri 07-Feb-14 23:31:30

That should read extra MARITAL activities...

Bonkerz Fri 07-Feb-14 23:48:23

Two weeks ago I had social services threaten to take my son away because I was neglecting him. The reason for this neglect? His school had rang me saying he needed to be collected as he had tried to self harm (ds age 13 has autism amongst other things). I said I couldn't collect due to work commitments but that my husband was sue to finish work early and could collect a lot easier than me. I have them dhs direct work number and ended the call. (Ds was calm for the rest of the day after his meltdown and I did ring school an hour later to be told ds was fine) School reported this to ss that I had refused to recognise that ds was suicidal! School never rang dh, but ss did and ordered dh to collect ds immediately and get him to a medical professional!!!!!!!!!!
It took a lot of explaining to get social services to understand that my son had two parents and whilst I could not prioritise his needs at that moment in time that my husband could.

BlackLabrador Sat 08-Feb-14 00:08:53

That's awful Bonkerz but I am unsurprised. I despair of social services where support of families with SN children are concerned... hmm

arabellarubberplant Sat 08-Feb-14 03:16:17

It is of course a conversation worth having, and questioning why the status quo of female as primary care-giver (and thus Carer) is still this way in the 21st century.

But I'm really disappointed that this was just an ad for Rosy & Bo.

It seems disingenuous, somehow.

Write an article about how hard it is to get sn products, Hannah, or how about terrible it is that sn stuff is so much more expensive than nt stuff.

Don't tease us with a pseudo-intellectual intro and then plug your business. Tsk.

ratqueen Sat 08-Feb-14 08:25:48

Bonkerz that is awful. Why didn't the school call your dh before ss? shock

Blacklabrador I agree that you have done the right thing and think you have sacrificed more.than enough without having to.feel guilt too. He is happy now. You sound an amazing mum.

I think it is unfair to see this as just an ad for rosyandbo (which by the way, what an achievement). It is a guest post. The needs of carers and disabled children are hideously badly supported and the fact that 9/10 those carers will be women is just expected.

zebrafinch Sat 08-Feb-14 09:35:35

I was earning three times my child's father but still was the one who had to give up my career. My ex subsequently could not cope with the lifestyle changes caused by my son's complex medical condition. I have given up hundreds of thousands of pounds of earnings, have lost out on a pension, my health has at times been affected by chronic sleep deprivation. I know that I did the right thing to care for my child but it has been very tough at times.

Sometimes I look around and see all the people who earn a living supporting my son, from the taxi driver who collects him in the morning to all the people working in the statutory and charity sectors and wonder why is it that of all the people who surround my son it is the mother who is shafted financially? Why cannot the charities in particular who deal with disability employ more mothers of disabled children part time and pay them ? In my experience it is the fathers of disabled children who transfer their careers into the charity disability field and get paid for it. The mothers have to be content with the unpaid voluntary work .

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