Tag Archives: working parents

Known unknowns

When people tell me they don’t know how I cope with the challenges of our life I always take the trouble to point out to them that Boo is not the challenge. Neither cerebral palsy nor prematurity is even the problem. It’s all that came with his early birth and life-long disabilities. The people. The processes.

The uncertainties over his future are probably hardest of all to deal with, but you learn to live with that. I never thought I’d say that, but you do. I have. I think it’s because I can see the progress he’s making. He is on his own developmental curve, but he is developing into a lovely, bright little boy.

No: it’s the other uncertainties that come with Boo’s disabilities that are the unbearable ones. Your reliance upon individuals, services, administrations and bureaucracies that frequently fail or demonstrate levels of incompetence that are not just astonishing because frequent and because no one ever gets taken to task for them as they would in any right-thinking organisation, but because the consequences of people not getting this right can be profoundly damaging to Boo’s body and state of health. They don’t do my mental health much good either, let me tell you.

Some individuals we have been forced to rely on for advice and support have had appalling bedside manners (‘we don’t use the term vegetable any more, but…’) or made terrible mistakes, one leading to his hospitalisation. Others, happily the majority, have been caring and competent, even brilliant, but they have constantly been let down by the systems they are forced to use. Currently Boo’s physio (the very best of the healthcare professionals involved in his life) is pursuing a failure in duty of care notice about one service’s treatment of Boo at her own instigation, not because we asked her to. The fact that such action is commonplace and affects so many of the families we know makes me want to weep.

Until now the only things that have held us together through the catalogue of problems over getting ‘essential’ equipment and services for Boo (for which we, like so many other families, have had sometimes to wait well over a year) are our waning sense of humour, our determination to fight back and the fact that our home life and routine are fairly stable.

And now even those things are in jeopardy. Our LA is illegally sticking to its guns about the level of support it will give Boo in nursery (15 hours a week because of his age and not enough to cover his time there so I can work) and the onus rests with us to prove in court that they are wrong in taking this position without attending to his level of need and how long it actually takes him to access 15 hours of education, not for them to have to prove that they are right.

This will cost us money. Even if I can psych myself up to defend our case in court to save costs (and I am so beleaguered at the moment, I just don’t think I can) we will need to get a series of expensive private reports drawn up, even though all of those already provided by NHS and LA employees say what Boo needs them to to prove our case. If we got a solicitor, a much better option, we are looking at many thousands of pounds.

Given that we may end up in a Tribunal again about schools in 2 years time, we can’t afford this. More to the point, I would rather the money that we spend supporting Boo gets spent directly on him, not on people who make a living out of the fact that he is disabled.

And so, I can see things very clearly now. When people talk about the challenges in our lives I will be more emphatic. The big challenge in our life is not CP, administrative incompetence, systemic failure, or the illegality or ignorance of the Local Authority. No: It is money.

No one cares about Boo or about us. All anyone cares about is their budget.

So if it’s money people want, they can have it. I am currently begging (I am not proud of it, but I am – it is humiliating) Boo’s nursery to take more money off us (money we can only just afford) to buy him the 1:1 the LA won’t without a fight so I can continue to work. So we can have stability in our life. So Boo can access an educational and social environment that is aiding his development hugely. So that we can keep our home. So we don’t have to pay the council back for adaptations to be made to our home in the next few weeks if we are forced to move out of area into a home that we can afford on one income.

To be fair, the nursery is looking into this possibility. They are looking into seeing if they can help us meet the costs too. But the nursery is part of a national, expensive, private chain. (Your childcare options contract significantly when your child is disabled.) The nursery manager has asked their bosses to arbitrate on this matter. That was nearly 2 months ago. They still haven’t made up their mind. We are totally in their hands. I have no control over their decision at all.

So, in 3 months my life might be very much like it is now. Or it might be very different. I may have handed in my resignation and our home might be on the market. We might be trying to find an elusive accessible property Boo can live in and we can afford on a single salary that is near a decent school for Boo’s sister who will be forced to leave her friends. We might be facing up to having to set up again with a new bunch of healthcare and education professionals for Boo in a new area. Every time I think about it, I feel dreadfully sick.

These known unknowns utterly terrify me. I can’t sleep well and am developing migraines, which I have never suffered from before. I feel so shaken by not knowing what our lives will look like in 3 months time. Whether all the stuff that keeps us together (our home, our friends, our routine) will be taken away from us.

It is devastating. And no one who can do anything about it cares. Not one little bit.

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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.