Working it out

There’s a post I’ve been meaning to write for a while now. But every time I consider doing it, I take a step back and decide against it. It’s not that I’m frightened of writing it or of people’s reactions to it. I am a big girl and have the courage of my convictions, although I have a sometimes crippling worry (beneath it all) of offending people or of being thought to be in the wrong. I’d say I’m a walking paradox, if that didn’t make me sound more interesting than I am.

No: it’s not fear that’s prevented me from writing this before. It’s that I don’t want to be misconstrued. I don’t want people to think I have all the answers. At the moment, quite honestly, I feel I don’t even know what all the questions might be.

But like all of us, I have made certain choices in my life, and like all of us, I have been taken to task about my choices on many occasions and have been asked to defend them.

When I was younger (greener, more shy, less sure of myself) I used to find these moments threatening. As if people were trying to find me out or expose my weak will or hypocrisy. I usually swallowed my fears and tried to speak up for myself behind ever-reddening cheeks. Like all those endless conversations I had from the age of 12 when I became vegetarian. Wasn’t it irresponsible to have made this choice? What about the environmental impact of my decision (get me started on that one now at your peril)? Didn’t I know God made animals for us to eat and therefore I was a blasphemer? And anyway, wasn’t I a hypocrite as my shoes were probably made of leather (despite the fact that I haven’t worn a pair of leather shoes from that day to this)? Honestly, all these things have been said to me and many more besides. I used to take it all personally. These days I couldn’t give a stuff. When this happens now I am genuinely more interested in why people feel the need to quiz me so intensely. Surely it says more about them than me.

But there’s a new lifestyle question (I wish there was a font to inject irony into that horrible phrase I have just typed) which has totally supplanted the vegetarian one now. And to my great annoyance, I can’t brush it off our let it go. It runs too deep.

Sometimes it’s not phrased as a question, more as a statement of disbelief. But it can be summed up in two words, which are often uttered with a mix of facial expressions from the sad, through the patronising to the shocked and disgusted (not a word I use lightly) and in tones from the disbelieving to the downright condemnatory: ‘You work?’

As a parent of a disabled child, I’m horribly aware of the need to categorise people. The human desire to put things in their metaphorical boxes is indiscriminate, it seems. It affects those with and without additional needs, those without kids, those with them and their children. In my experience, mothers seem more susceptible to this kind of pigeon-holing than men (although that’s increasingly happening too, I think). So we’re not just mums, Moms, or mothers any more. We’re working mums/moms or WPs (working parents), SAHMs or WAHMs. There are subcategories of each and many others besides. Many of us choose to embrace these labels wholeheardtedly and wear them as badges of honour. Others are more troubled by them because for many, the label they wear is not adopted by choice but by circumstance. For others again (in which number I would probably count myself) we walk a fine line between choice and necessity.

My mum was a SAHM. It was the 1970s and it was what people like my Mum did. She loved bringing up my sister and me and was and is the best mum you could wish for. But she could never hide the sadness that giving up work or rather what came with it (a bit of financial independence, a modest social life) brought her. She and we lived off a few ten pound notes my dad would put in a purse in my mum’s underwear drawer every month. And because he was rubbish at financial planning, she would have to underspend each week and lie about it so that there was money to buy us birthday presents and clothes. In the end, even that wasn’t enough and she ended up taking a part time job when I was 10 for a couple of hours a day and spent every penny she earned on Christmas because were we up to our eye-balls in debt and there was no money for stuffing let alone the turkey (I wasn’t vegetarian then). My father was embarrassed and ashamed that she’d done this (that she’d had to do this) and would never admit to anyone that my Mum had a part-time job. Many years after they have retired it’s still the elephant in the room in my parents’ house, that is when you can actually get them to sit in the same room together for more than a couple of minutes.

No prizes for guessing, then, why I felt compelled to get a good job to support my kids from such an early age. My life would be different, I remember thinking when I went with my Mum to help her open a bank account of her own for the first time in her life when I was 16 years old and she had been married for 18. I would strive to be like my mum (the best mum I could imagine) but I would also work. I couldn’t stomach the kind of dependence she’d had to live with. Of course at the time, I didn’t know that relationships could and should work very differently from my parents’. Isn’t it weird how you think the rest of the world works like your household?

But old wounds run deep and all that, so it’s hardly surprising that not-working was never something I ever considered. Not when I had Sissyboo. Not when I was pregnant with Boo. Not even when he was born prematurely (he’d grow out of that, right?). No? Oh well, I’m sure he’ll just be delayed then. No? Life-long disability? Right. Cerebral Palsy? OK. Epilepsy? Crap. 3-6 appointments a week (holy moly). Yeah… hmmm… I’m still gonna work. That’ll be OK. Right?

The answer is I still don’t know. Life is difficult. Sometimes it seems downright impossible, like last night when I worked till midnight only to be woken 45 minutes after I’d gone to sleep by Sissyboo who had wet the bed, who then woke up Boo by putting her clothes in the laundry bin with creaky hinges, who then thought it was play time. Or when I am rushing back from a meeting 65 miles from home to squeeze in 30 minutes of standing frame time for Boo before his bath knowing that I’ll have to write up the notes when he’s gone to bed and all I want to do is sleep.

But I don’t ask for pity. To be honest, I don’t feel like I have much choice about the whole working thing. If I lose my job, we lose our home. In order to have a house that would meet Boo’s needs for equipment storage/layout and cost us less, we would have to move areas and schools. I won’t do that to Sissyboo. She has had to deal with too much change.

And you know what? I need to work. For my sanity. I need something else to occupy my mind, even if I interrupt tasks to take calls from therapists, attend meetings with consultants, write emails and source equipment.

My life has changed beyond all recognition, but I haven’t. I’m still me, the same girl who went with her mum to the Halifax to help her open a secret bank account in 1992. But as I’m slowly coming to realise, perceptions of me have changed dramatically over the past 20 months. And I find that hard to deal with sometimes.

Boo’s disability seems to give others the right to judge me. You know how when you’re pregnant random people feel they have the right to prod your belly, or stare at your swelling boobs, comment on your radiance (even though you know you look like crap because you haven’t been able to sleep for a week) or tell you about their episiotomy? It’s like that, but in some ways worse. Because now people don’t comment on my body. They comment on my choices. My life. Me.

Like the receptionist at our local hospital whom I had to phone on Friday to rearrange two of Boo’s appointments. When I gave Boo’s name, she remembered me. This isn’t the first time I’ve had to re-book appointments. Not by a long chalk. And she knew I worked. Because I wasn’t there in person and therefore she couldn’t roll her eyes at me (though that happened in wheelchair services on Monday when I was asked by someone else whether I worked or not) the receptionist just had to say something about it didn’t she? It wasn’t the first time I’d heard the words, but they didn’t smart any the less for that: ‘Don’t you think it would be a lot easier for you and your son if you didn’t work?’. If she’d added the word ‘dear’ to the end of the question it couldn’t have been more condescending. Or hurtful.

Never mind that I wasn’t rearranging the appointments because of my work. One appointment was a double booking. The hospital expected us to be in two places at the same time, which the computer didn’t see as a problem because (stupidly) two PCTs operate out of our hospital and we had a clashing appointment for a service out of each of them. Never mind that I was cancelling the other appointment because we’d had a letter from audiology saying a follow-up wasn’t needed until March and the appointment we’d been given was in December.

No: I was being awkward because I worked. Worse: I was clearly a bad mother because I work. She is not the first person to have said as much to me. I know she won’t be the last.

I said nothing. Because I was stunned. Because I was upset. Because we have so many battles to pick to get Boo what he is entitled to and needs, and my feelings can stand it. His needs are more acute.

I am not always the parent I want to be. My failings are numerous and varied. But I love my kids and I work harder than I could ever have imagined for them in my paid day job and as cook, cleaner, provider of cuddles, PA, speech and language, physio, occupational and hydrotherapist and ….

You know what? I’m going to stop here. I’m not going to defend myself any more. This is my life and these are the choices I’ve made. Others have made different choices. Some, sadly, as the many emails I’ve received from parents battling to get their disabled kids nursery or childcare places indicate, have no choice at all. I pass judgement on no parent when it comes to their decision to work or not work and would back anyone in helping them to make any preference they have a reality. The biggest con in modern politics is that people in this country have a right to choose the life they want to lead. Choice may be a fundamental human right, but it is a privilege extended to too few, in my opinion, at this present moment. And these choices contract immeasurably when you or a loved one is disabled. I’m one of the lucky ones. I know that. I have an understanding employer (for now) and a flexible contract that has enabled me to make decisions I know others can’t.

My decisions might not be to everyone’s taste (to put it mildly), but they feel right for us. For now. And if and when they cease to be, rest assured, I will revisit them and make others.

But let me say just one thing. The thing I should have said to the receptionist, before deciding it was one battle too many last week.

I’m not defined solely by the fact that I work (though my work is huge part of my identity), just as Boo is not defined by his CP. We are two people with complex existences trying to make the best of this life we’re living. Lots of things would make this easier. Understanding and kindness are two of them.

27 thoughts on “Working it out

  1. Sam Candour

    Excellent post. It seems that mothers can’t do right for doing wrong and that seems to be magnified in your case. Would the receptionist have said the same to Boo’s dad? I doubt it. It’s unacceptable for people to be so rude and it infuriates me.

    1. mrboosmum Post author

      Sam, you’ve hit the nail right on the head. No one ever asks Boo’s Dad if he’s finding things difficult to juggle and no one would ever assume he would take on less work let alone give up work.

  2. Momma P

    Well said. I get the looks too and my husband really gets looks and flack for being a stay at home dad. He wasn’t able to find a job in his field after graduating then Sebastian was born early. Then with Sam, I went on bedrest so his being home was a blessing. It’s a shame there is so much judging .

    1. mrboosmum Post author

      I totally agree. Everyone’s situation is different. What makes people feel it’s appropriate to judge others? Thanks for reading and commenting.

  3. Pinkoddy

    It is absolutely awful that people feel they have the right to judge, and even worse to comment. You know that if you didn’t work you’d just get judged for that too – right?
    I am glad to have gone self-employed with my blogging so that I can “work” but even then people consider that I’m not working – in fact actually they think I’m not doing anything!

    I’m glad you are strong enough to stand by what you want to do, and have made it all work for your family.

    1. mrboosmum Post author

      Urrggh. That makes me so mad. Anyone who thinks you aren’t working because your blog is your work has no idea what they are talking about. And the idea that stay at home parents ‘do nothing’ either is so offensive. It’s people’s refusal to try to understand the complexity of others’ lives I find really sad and wrong.

  4. Orli D

    Wow. I am stunned. The audacity some people have. It never cease to amaze me the way some people look at you. We had something similar last week – and I don’t work- we needed Ron’s teacher to move his parents-teacher meeting time because Yon can’t wait in a crowded hall with a 100 people he doesn’t know for an hour just because she doesn’t think Ron should have both his parents there. I have to say I had to restrain myself at the end there. People judge you no matter what you choose to do. And they judge you more if you have a disabled child. And they are all bloody wrong. We make our choices in life and they all have prices. The price of staying home, even if you disregard the fiscal one, is no less high than going out to work. Hold your head up high and just know that you are doing an excellent job, in all your roles.

  5. Christina E (@Beadzoid)

    Well done you for getting to the point where you are done justifying yourself and your ‘choices’ to others. You are right – it says more about them than you when they openly judge. I used to be the same – worried about perceptions and not wanted to be seen in a negative light. I mean, surely it’s better to kill yourself living your life the way others decide that you should rather than taking a harsh look or comment, right? Or even imagining that that’s what is happening? You and I have come to the same conclusion I think – no it bloody well isn’t! You have to do what is right for you at that point in your life. It’s liberating, and absolutely necessary. I remember writing a post a while back about being a Highly Sensitive Person. Finally, in my mid-30s, I’ve grown out of it – which I am extremely thankful for as having that external view of myself was completely exhausting. I hope you likewise find peace and balance xx

    Ps: As an aside I have been following a vegan diet for the last 10 months and the regulation of hormonal imbalance that has resulted in has had a huge impact on how I view myself and the world in general.

    1. mrboosmum Post author

      Hello, lovely lady. Thanks for reading and for the comment. You are right: killing yourself to live how others think you should (or you think others think you should) is exhausting. I’m getting much better at rising above such things, but still find it hard. Especially when I’m being judged as a parent. And I was so happy and interested to hear about the effects of your diet. That sounds great.

    1. mrboosmum Post author

      I know. I think it’s true for all parents (especially mums) that you start to be thought of as a little bit less you after giving birth but it’s certainly worse when you have a child with additional needs.

  6. lookingforbluesky

    I get judged all the time. Other special needs parents are mostly very supportive. But the rest? Well they expect my house to be in better nick, they don’t understand that I’ve no spare time cos I find time to see them (cos I cancel EVERYTHING) . I work because it helps keep me sane, but also because as a lone parent/carer I am otherwise viewed as a scrounger. One day I hope to be like you, and stop worrying about what other people think – great post xx

    1. mrboosmum Post author

      Thanks, lovely. I wish I didn’t worry what others think. I am better than I was, but I still worry that the house isn’t tidy/clean enough that I but cakes for the school fair, that I look slightly out of place in the school playground…

      The idea that anyone who doesn’t work so that they can care for the children, especially when they have additional needs, is a scrounged makes me so angry. As if we haven’t got enough battles to fight without battling unfounded prejudice!

  7. mylittledreamworld1

    I meant to comment on this when you wrote it but life got in the way a bit. Lovely post – that was a very unprofessional receptionist. You working has nothing to do with anything – you work for your own reasons that you don’t need to explain to anyone. You clearly love your children and would do anything and everything to make sure that they are okay. You can’t do more than that. Xxx

  8. Giggler's Mum

    I have the same beef. At appointments, no-one ever asks my husband whether he works or how he is “managing” work but they always ask me (after they have managed to control their look of surprise or disapproval once I’ve made it pretty clear that I do work). Like the commenter above, the widespread description of me in all letters & even in phonecalls as “X’s carer” drives me up the wall. Given the amount of contact I have with these professionals you’d think it wouldn’t be too hard to learn my name or at least refer to me as Mrs X (not one I often use but I’d take it over “generic carer”) Last week I was given 2 days notice before an important appointment that involved a number of professionals – the professionals in question had spent about a month co-ordinating their diaries but seemed to think I could be available at the drop of a hat. The fact that I work is usually recieved as a great inconvenience to them, as if I’m doing it simply to make it hard for them to see my son (& not because we might need the money or because work keeps me healthy & sane) Arghh!

  9. jbailey2013

    Hannah, I’m sorry that you are getting these response to working. It is wrong and I hope you find a way not to be hurt by it. It is gendered – all the phrases about working mums (never working dads) etc. I reckon there are a lot of us who would try and do the same as you. Sod the rest of them.

    1. mrboosmum Post author

      Thanks, Joanne. I know you’re right. Oh but my name isn’t Hannah, although I have a friend with that name who may have tweeted a link to the post.

      1. jbailey2013

        I just realised I’d used your friend’s name – as I was reading her guest post at the same time. Many apologies.

  10. Jaime Oliver

    aww my lovely as i was reading the part about your parents and your father and money i was so sad but yet could so relate it gave me goosebumps. My father was exactly the same and my mum took a cleaning job to earn £10 a week but she had to walk 6 miles to get there and 6 miles back as an adult it breaks my heart (after 28 yrs together my parents are no longer married and she re married a wonderful man) x

  11. Iona@redpeffer

    There was so much thoughtlessness in that receptionists comment sadly. But it happens all the time doesn’t it? My neighbour’s father recently judged me as ‘not doing anything’ because I’m at home-even though I’m trying to work and look after the children. It still irks me now. You have to make choices all the time about what’s best for you and your family. I would ask people not to judge others, but I guess it’s human instinct partly-we can’t help it. I judge myself all the time. Hang in there xx

  12. Sylvia

    Hi there! I’m visiting from Love that Max. We all make the choices that we must make for what ever reasons. Life would be so much easier and more pleasant if we could all just respect and help each other. I have felt the way you do because I have chosen not to work. However, because I became a widow with two sons at a very young age and because it has often been a struggle to live on my present husband’s income alone, I believe it is crucial and have encouraged my daughters to prepare in what ever way they choose -to be able to earn an income of their own- even of they choose to be stay at home moms. You just never know what life will throw at you. Women need to be prepared. I would like to invite you to link up over at my blog where I post a Friendship Friday Linkup every week!

  13. Jonathan

    What that receptionist said was out of order and there was clearly no need for it. It suggests that there’s a bit of an issue in terms of lack of training there if someone working in a hospital who isn’t actually a medical professional is passing judgement in an insensitive manner.

    It frustrates me when people seem to think that there’s just one way of approaching all sorts of different choices that we all face as parents. I know people who do things differently compared to my wife and me when it comes to things like childcare, bed times, sleeping arrangements, feeding, types of nappies and countless other things. I think that a lot of it boils down to finding what works for you as individuals and as a family. I’d have thought that it’d have been fairly obvious that not everyone’s going to find that the same thing works for them as for the next person.

  14. Victoria Welton (@VicWelton)

    Too many people are so quick to judge without knowing the full facts. I think you should be allowed to live life as you choose (providing it’s not illegal!!). My sister works and her son is disabled but I know that not only does it for financial reasons but also for her own sense of worth and personal identity. Thank you for linking to PoCoLo x

  15. Dean B

    You don’t need to explain to anyone about the choices you make in your life. It’s your life and your decision, no one has the right to judge you. You’re doing fine, in fact, you’re doing great. What right has that receptionist to even say that or question you? How annoying! I’ve always worked, straight out of University and never stopped till I got married and had my now three-year-old daughter. I’m still doing a bit of freelance work. If there was work available to me, I’d rather work full-time. But that’s just not possible where we live (in a small village in North Cornwall), but right now, I’m fine with not-working full-time. But get a bit self-self-conschious, especially when talking to former work-mates/classmates when they ask if I work and I feel a bit embarrassed to say that I don’t? But then again, that’s just me. You’re doing fine! 🙂

  16. mummytries

    This is a great post, one I’m sure you feel a bit better for writing. We all make our decisions based on what we feel is best for our own families. The main thing that struck a chord with me is that you’ve said you need to work for your sanity. Recognising this is so important, because the alternative could potentially be really damaging.

    If folk could just stop judging, it would be a much happier world #PoCoLo


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