Tag Archives: 1:1

Fighting Talk

On Saturday, like every Saturday, I took Boo swimming. It is one of the highlights of my week. He’s such a water baby and to see the incredible joy he has doing things in the water that he can’t do on dry land is just … well … so amazing words fail me. But this Saturday, I wasn’t so excited.

You see we were with a different group of kids and parents for the new class term. Boo is at the limits of what he can do in this mainstream class, which now involves diving off the side and running on a float. So we can’t yet move any further forward. I suspect we’re at the end of the line of these lessons. I mean, Boo can’t even sit on the side safely. But his teacher is brill and we adapt things. We decided to repeat the level we have just done with a new set of parents. Boo wouldn’t care he was repeating and it would be good for him.

But I was dreading it. There would be the looks from parents who didn’t yet know him. The explaining to do about why my little boy can’t stand. The questions to answer. The ‘what’s wrong with hims’.

We had some curious, if well meaning, looks throughout the class, but it went fine. As we were getting ourselves dry afterwards a parent asked if we were new to the class (clearly her way into finding out what Boo was all about, I think). She was nice and I just explained why were we repeating the level. I told her that Boo loved swimming and since there’s no hydro in our area and no special needs classes for kids his age locally we were sticking with mainstream lessons as long as we could get away with it.

The another Mum joined in. There was something about the way she spoke to me that made me understand that she lived in or on the periphery of our special needs world. You can always tell. She was confident in our company; she looked at Boo unfazed. Either she knew a child with additional needs well or worked with them. I just knew. Thirty seconds later all was revealed when she said she was an Educational Psychologist (or EP to those of us who live in this world of SEN acronyms). She was infuriated that Boo doesn’t get hydro. In her area, just over the border, she explained, Boo would.

And then she tried to spur me on. ‘This is just wrong. But it is about Boo’s needs you know. If the NHS doesn’t fund hydro in your area, then you should fight them. If your physio supports you, get her to write on your behalf to force them to provide access to a private pool. It’s discrimination. Honestly, the parents who fight the hardest and shout the loudest get the most for their kids.’

If I’d had a pound for every time someone had said this to me since Boo’s birth…

Of course I’ve looked into ways of accessing hydrotherapy. And of course his physio supports us and would testify to the benefits for Boo. But he furthest I’ve gotten in pursuing this is to be given the number of a private physio who charges an eye watering per hour fee for hydro once a month (and we pay a small fortune for swim lessons now, let me tell you).

I thanked the EP for her advice and support and explained that I would get onto it, but that we were fighting two other big battles at the moment (statementing and social services over house adaptations) so it wasn’t at the top of the list. She understood. She knew how hard it was. ‘But keep fighting’, she said.

I left feeling grateful for the kindness of strangers.

And sad. Really, really sad. I tried to work out why and think I now have.

You see, I realise that I have had it with the fighting talk. Absolutely totally and utterly had it. Don’t get me wrong, we have had to fight for virtually everything for Boo: to get onto waiting lists; to get Boo off them to actually see someone; for virtually every piece of equipment he has, including his Bee seat (that fight nearly broke me) and his adapted buggy; to get him 1:1 support in nursery; even down to getting a bloody pair of Piedro boots. I could go on.

Of course, we’re not alone in this. You need only look at the special needs equipment online forums to see how hard people have to try and how much money they have to save to buy even the basics in our children’s lives. These forums are totally great – I use them a lot myself and have bought lots of essential kit for Boo from them second hand. But they are also incredibly frustrating and occasionally downright uncivil.

Here’s a common scenario. Parent A at the end of their tether waiting for something they have been told is essential for their child’s health and happiness asks if anyone has one to sell on said forum. People jump in and say no but express sympathy with Parent A for the ridiculousness of their predicament. Then Parent B jumps in and points out, in the spirit of helpfulness, that Social Services or their PCT should provide this equipment free of charge. Of course Parent A knows this and has already exhausted all lines of enquiry. Parent A explains this. Then Parent C comes in and says Parent A should fight harder. They should make them get it for their child. Parent A either answers back that their LA or PCT doesn’t work like that or silently crumbles.

Because you know what? There is NOTHING national about the National Health Service. And you cannot emphasise the LOCAL in Local Authority enough.

Now I know everyone is trying to be helpful, but I wonder if we are, really. Of course, we are parents. Of course, we would do anything for our kids. Heck, in my darkest moments with Boo, when we didn’t know if he would survive or not, I begged any god that would listen to let me die if he would only live. Of course, we will fight for them. But is this fighting talk helpful?

I remember talking about something similar (although in other ways very different) with a friend who had a close relative in the advanced stages of cancer. She hated the fighting talk too. Her relative would not win this particular fight. That didn’t mean she wasn’t the most poised and determined of women. That she didn’t cope with her appalling situation with a courage I don’t know that I could ever possess.

Here’s the truth: the language of fighting turns us into winners and losers, because that’s how fights go. This cannot be right. Surely, we are in this together.

What if you can’t persuade the LA to support your child in nursery? What if you can’t get them to buy your child Piedro boots? Are you a bad parent? Is it just that you haven’t fought as hard as everyone else? Of course not!

And you know what really gets me? What really, really gets me? It’s that we have all internalised this language of fighting so much, become so embattled in our special needs world that we accept it. This is as true for me as anyone else. My last post about our statementing debacle was called ‘Let Battle Commence’.

Today I want to look at things differently. Today I want to ask: what is so wrong with this world that simply tending to the need of some of society’s most vulnerable people has become a battleground?

The minute we start using the language of fights and battles we become part of the problem, turning our lives into a survival of the fittest (for fittest read: most vocal, most persuasive, most legally minded, most litigious, most desperate) parents for the sake of our kids. This cannot be right. Can it?

But I fear it cannot be undone either. I wrote this post because I feel I’m done with fighting (I’ve always preferred the more American sounding word advocating anyway). Because I am battle weary. But I can’t let Boo down. I have to press on and charge ahead. And the minute I stop writing this post, I have to write a covering letter to our Local Authority about Boo’s draft statement, which will quote case law and the Equalities Act and which will be laden with fighting talk.

And you know what? I hate it. I wish things were different. I wish I knew what to do about it. I suppose the only thing we can do is make sure that our battles with systems don’t force us to battle with other parents like ourselves.

Each battle for every one of our kids has to been as a battle for them all. Otherwise, what price victory?

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Guest Post: How Can I Make Working Work?

This post is not by me. It’s by someone who wants to remain anonymous. But the story she tells is very real and a powerful reminder of how very quickly and irrevocably lives can be changed by disability entering their lives.

I write this post with some reluctance due to the enormity of the decisions we made in 2012 but I stand by each and every one. I also want people to know how easily situations can change. You can be a working mother one year, and rely on “benefits” to top up earnings the next. You can ” have it all” –  house, 2 cars, holidays, good jobs, career and can lose everything very quickly. 

I loved my job as a science teacher. The kids were brilliant. However over my almost 10 years of teaching I saw the profession become increasingly less fun with more marking and more reinventing of the wheel. Preparation, marking, feedback, observations – all began to take over my life especially as our school went into special measures.

Yes we have 13 weeks “holiday” but this is usually spent on marking coursework and books (or pretending that the huge piles of it aren’t still in the car later into the holiday and having to do a 3 or more day intensive marking session to catch up). Contrary to popular belief you don’t whizz out the door at 3.10pm you have meetings, phonecalls, preparation and marking. You can either take it home or do it there, but it still needs to be done. 

I went back to work full time after my first child. Childcare was split between my my mother, my MIL and my husband who had flexible working. When my second child was born I had planned on taking a full year off and then reducing my hrs to 4 days a week and thus not needing to lose any of my responsibilities ( TLRs) that I had built up at work. However all of a sudden I became the mother of a severely disabled child. He wasn’t content with with just being profoundly disabled, he had many health problems too,  and would become very ill very quickly ( think resuss and you have a fair idea). Added to the mix was a probable limited life expectancy and him being classed as life threatened. I had to go back to work anyway for a set amount of time or pay back all of my maternity pay. I negotiated a further reduction of hrs to 2 days per week, gave up my extra responsibilities and attempted a return to work. We struggled financially with me working this way but those few days were difficult enough.

I left my son with 2 terrified grandparents each day I went to work. They struggled with his care and his equipment. There was a mention of 2 year funding to help with a nursery place but no guarantee of 1 to 1, and we didn’t fall into the “right” post code anyway. Even so, what mainstream nursery could have coped with my son’s needs? So those 2 days a week I sat at work panicking about what was happening at home and still had all the prep and marking that came with the classes I taught. I tried to stick appointments in for the back end of the week but those 3 days turned into a chaotic mess.

After a few months I began a spiral into depression and was signed off work sick, and then eventually handed in my notice. We were in and out of hospital with my son, had appointments galore, and had 2 grandparents too scared to look after him and no alternative childcare, what else could I do? 

We had a mortgage on a house we had already been told was unadaptable for our son’s needs and had had it on the market a while with no success. 2011-2012 was not the best time to be trying to sell a house and in addition all those debts you have and pay quite easily on 2 wages were starting to mount up. We asked the mortgage company for help- to just pay the interest on the mortgage until we sold, but they refused. 

As the bells saw in the new year of 2012 we made a huge decision. We needed a fresh start. Our son’s issues weren’t going away anytime soon and we couldn’t manage financially on my husband’s salary. We declared bankruptcy in the February and even had to borrow money from friends to pay for the bankruptcy (it wasn’t cheap at over £700). However what the courts don’t do is automatically take your house (although they did take my car). They bend over backwards to help you keep it. But it was no use to us and even without the debts the bankruptcy cleared we still couldn’t pay our hefty mortgage. After about 6 months of non payment the bank took the house. In that time we had already (just) been housed by the LA in a large house that could be adapted for our son. Getting rehoused was an awful process of begging and pleading. Quite frankly I have never felt so low as I did during this period of time. 

So now we are 2 years on and my son has started school! He has a full time placement at an amazing special school expert at dealing with complex needs. However he’s rarely there all day as we have so many appointments. I had hoped to consider returning to work once he started, but with 2 or 3 appointments per week who would have me? I considered supply teaching, although it would pee me off in a way to be “at the bottom” but more importantly who would care for my son before and after work? I can’t change career as we have no one to look after our children in school holidays.

What do I do? 

 
How can I make working work? 

The Invisible Woman: Working with a Disabled Child

Invisible Woman

We are largely invisible. When we do get on other people’s radars, we are sometimes met with looks of amazement, admiration and pity. More often, in my experience, we are met with disbelief and dismay. We are are a nuisance. We are judged frequently and are often founding wanting. Because we are the working mums of disabled children. We are just not supposed to exist.

Most of us thought and expected that we would be part of the 60 per cent of mothers who work at least some of the time once our children were born. But suddenly our lives altered in ways that none of us could imagine back in those happy days. And now we are some of the staggeringly small 16 per cent of mums with disabled children who work.

We are a subcategory. With the emphasis very much on the sub.

For us, work is many things. It is a necessary evil to keep a roof over our heads and get the bills paid. It is a way to meet the extraordinary and unexpected costs of providing for a child with additional needs, from specialist feeding and seating equipment to major house alterations and house moves. Work is our sanity saver, a place to gain a bit of head space in a life that is often good but also utterly exhausting in ways I never understood before the birth of my son. A life where everything that matters most is on the line. But work is not respite, by the way. Don’t get me started on that. Work may give me a break from my caring responsibilities, but it is hardly restful.

Work is a way of clinging on to a piece of ourselves, the bit of us that isn’t fully accounted for by the name ‘Mrboo’s Mum’, by which the army of thousands that are involved in my son’s care call me, much to my irritation. Work is a bit of us that isn’t defined by our role as carer, the name we are assigned at our children’s birth and that insidiously robs us of the right to call ourselves plain old parents.

And work is a battlefield. We rely on employers understanding the benefits (to them as well as us) of flexible working, just as they rely on our competency. And let me tell you, looking after a disabled child is a daily and never-ending boot-camp in training us to achieve perpetual efficiency, multitasking prowess, and research skills that most PhD graduates (I know because I am one) don’t have. Take it from me, you want us in the workplace. We have skills in abundance. And we don’t have the luxury of being able to remember how to waste time. You’ll get your money’s worth out of us, I promise. Just as the state does. Many times over.

We also rely on, even if we sometimes give up hope for, the understanding of the NHS and other relevant service providers as we get handed with a day’s notice appointments at 11:00 on a working day. We rarely get this understanding, however. The assumption is that we must be full-time carers. (This is never assumed of our male partners, unsurprisingly.) How could we be so inhuman to be anything else? I do care for both of my kids full time, by the way. I just happen to be at work sometimes while I’m doing it. The assumption is that we are perpetually available for appointments and reviews at the convenience of others. Sometimes, we are even expected to be in two appointments at once on different sides of the same building.

I know this, because I have been told and experienced all of these things. I have been pulled up for being a working parent so many times since having Boo. I have been told by a receptionist that it would surely be better for me and my son if I did not work. I have been told by a support worker that I was ‘so brave’ to work when clearly ‘brave’, judging from the disapproving look on her face, meant ‘irresponsible’ and ‘derelict in duty’. I have been told that I am ‘unhelpful’ when I said that I couldn’t take a cancellation appointment at 24 hours notice that they needed to fill for what was a non-urgent routine review for Boo. (Incidentally the same thing happened three months later when I turned down a similar offer of a cancellation appointment that clashed with my daughter’s nativity play at school. Apparently not giving preferential treatment to my disabled child above my neurotypical daughter is another of my maternal faults.)

Moments like these are too numerous and horribly predictable to list in their entirety. Right now, my heart is beating fast with anger as I type them out. But at the time all of these things were said to me, I confess that they made me sob uncontrollably. I’m not a crier by nature, but I can’t swallow the tears when my love for my child is questioned. Maybe I can’t take it because the fact that I use the full flexibility in my job to be as hands on in Boo’s care as I can and therefore work 5 out of 7 nights every week, often well beyond midnight, means that I am perpetually exhausted. Tiredness and steadiness of thinking are not happy bedfellows. Maybe I’m just so ground down by battling the systems, getting appointments, accessing equipment and sorting nursery provision that I have lost my sense of perspective. Or maybe the reason I get so upset, is because the criticism is so unjust and, frankly, offensive.

For all this, I consider myself lucky. My employer is understanding. My job has a degree of flexibility built into it, as does my partner’s. We have battled for and successfully obtained 1:1 support for Boo at nursery. It is not enough, but the nursery and we work around it as best we can. Many are not so lucky. Of course, many mums of children with additional needs don’t want to work. I completely understand that. But I also know of at least a dozen mothers through my immediate circle of acquaintance that have been forced to leave good, fulfilling and important jobs for lack of adequate or affordable childcare or because they were denied access to 1:1 funding. I know many, many more of these women through the blogosphere.

And, as Sarah Collins, of First Touch NNU, a charity that supports families with babies in special care at St George’s London, notes, even if you have an ‘accommodating boss’ and work for ‘a child focussed’ company, things don’t always go to plan for parents who want and try to work. On only her second day back in her job in a children’s theatre, Sarah’s 18 month-old daughter was rushed to hospital with a seziure. ‘It began to dawn on me that paid work was not an option at that point in my daughter’s life’, she remembers.

We have been busily talking about the challenges and benefits of being the working mother to a disabled child on Twitter, Facebook and blogs for some months now. It’s a conversation that came into sharp focus in a wonderful interview Hannah Postgate, founder of Rosy and Bo, gave on Woman’s Hour recently. This has inspired a bunch of us to get together a round-up of our blog posts on some of the issues we face as, what our blogging friend at Areyoukiddingney calls, WMOADC (Working Mothers of A Disabled Child), from the prejudice we are routinely subjected to to the difficulties of accessing what we are told is within our children’s basic human rights: inclusion and education.

Enough already. We may be the minority, but we are not silent. We are not content to be talked at or about. We can speak for ourselves. And we want and need to be heard.

Please take time to read and comment on some or all of the posts below and if you know of others on this subject please email me (premmeditations@gmail.com) and I will add them.

Blog Round-up

Returning to work is tough after kids, full stop. So Hannah almost felt a bit of a fraud bleating on about this topic, until she considered one of her children has autism and learning disabilities. Disabilities, hospital appointments and appropriate childcare all play a part in the difficulties mother’s like me face getting back to work. But there are also the barriers we face from employers, not to mention the sheer exhaustion and strain making it an impossible prospect for many mothers.

This is not something we can continue to leave unsaid, as Hannah writes. We need to talk about it, air it and try to change it.

How Can I Make Working Work?

This powerful and moving post appeared as a guest post on Premmeditations and was written by an amazing woman who wants to remain anonymous as she relates how the birth of her son left a family who had it all – a career, cars, a house – losing it all terrifyingly quickly.

Nice Work if you Can Get it from Areyoukiddingney

Not only does she have one of the best blog names out there, but she coined the acronym WMOADC. If you have no idea how working mothers of disabled children are sometimes treated by those who help us to look after our children then wait for the scales to fall from your eyes in this moving post.

Working Mum, Disabled Child, and the Myths Inbetween from Complicated Gorgeousness

With a combination of wit and pragmatism that only Alison possesses, here’s a post about how it can all work when you go back to work. And how it could be a whole lot better.

‘A Full-Time Mama’ from An Early Start

If you were thinking that the difficulties of returning to work and finding appropriate childcare when your child has additional needs are a British problem, think again as this lovely post from An Early Start, which chronicles the life and adventures of the amazing micro-preemie Jax, born at 23 weeks, makes clear.

‘Working with A Disabled Child’ from Itssmallsworld 

How getting back to work for the parent of a child with disabilities is made all the more difficult due to lack of governmental forward thinking and understanding. And thank goodness for some local common sense.

Dr Mr Gove (& Assorted Pals) from Gingerbread and Sunshine

If nothing else persuades you of the injustice and financial fuzzy thinking that lies behind the government’s policy towards families of disabled children, this post will. Let’s hope it wakes the MPs up, too.

Those Who Can, Do from Little Mama Said

No one is immune from disability hitting their lives suddenly and without warning. This moving post from Little Mama Said explores the irony of being a special needs teacher, not being able to teach after having a child with special needs.

‘Did They Allow Your Special Needs Kiddie into Nursery?’ from Mama Lewis

Mama Lewis shares her experiences of returning to work after the birth of the lovely May.

We Work! (We do. If You’d Let us) from Mama Lewis

A second and equally brilliant post by Stacie Lewis that poses some provocative questions that should be blissfully easy to answer: ‘Why is it less important that I work full-time than it is that my husband does? What does being May’s mother mean? Does it mean my life is not worth as much as hers?’

How Can Work, Work? from One Off Ordinary

A thought-provoking post from a fabulous mother of two (one of whom has additional needs and is now at school) on the logistics of trying to get back to work.

Let’s Talk About Work, Baby from Orange This Way

She tells us to sit down and have a cuppa to read this. But if this post doesn’t make you want to stand up and do something when you’ve finished reading it, nothing will. All you need to know about being a working mum to a disabled child, and much more besides.

‘The Chaos of SEN Childare’ from Premmeditations

This year new funding sees many disabled children able to access government-funded childcare for up to 15 hours per week. But have they thought this through? Here’s my experience of the battle for 1:1 care for our son at his nursery.

‘Nursery Provision for Special Needs – The Good, The Bad and The Ugly! from Tough Little Cookies

Can you only get a place for your little one if you know who to ask, how to ask and how to ask again (and again and again) if you are told nothing is available? For every working parent who manages to secure a nursery place for their child how many have to give up their job because adequate nursery support does not appear to be available? These are just some of the questions the mums of the Tough Little Cookies ask in this hard-hitting post.