Why this SEND mum is leaving her job in the NHS

Why this SEND mum is leaving her job in the NHS

This is the first time I have written anything for the blog since April. It was round about the Spring when I knew something definitely wasn’t right.

Since then, I’ve been right down to the bottom of the ocean and back up again. Not the exotic, pretty parts of the seabed, bursting with rainbow corals and shimmering shoals. Where I went, it was dark. Murky. Where you can’t see your hand in front of your face and you don’t know what’s coming up behind you next. But you know it’s a long way back up to the surface, if you can find it.

There was a time when I thought that negotiating the smoke and mirrors of the education and social care systems for Orange would call time on my sanity. This is the brutal truth for more SEND parents than I wished I knew. So far, for me, it hasn’t. But since I’ve had the weather eye of a hawk on that front, sharing the load with family and my band of SEND sisters, I missed the hurricane as it snuck up from the other side.

When Orange arrived, he changed my outlook on life, and work. I wanted to do something that mattered. Which isn’t always easy when you’ve built your career in public relations in the City and Soho. So getting a senior role at a NHS and social care provider finally felt like I could make a difference. A job where my personal values could come to life through my work. A career coach’s dream, right?

For the first year it felt amazing. I was good at this. Using my skills for something real and important. Engaging my brain in a way that became a wonderful distraction from dealing with the 5,674 ways the local authority was trying to make Orange’s home adaptations and school transport into a sticky quagmire.

When the storm clouds started to gather at work, I thought I could bat them away by listening to audiobooks about ‘how to be brilliant’ and blaring Tim Ferriss podcasts that would show me how to tackle any sort of work crisis that might come my way.

I thought that because I’ve had to tackle challenges so far out of the ordinary, like resuscitating my own child, that I could tolerate pretty much anything and come out of it unscathed.

But I couldn’t.

No amount of inspirational podcasts and books about creative brilliance and productivity could relieve me of the uncomfortable fact that being in my job was beginning to compromise my sanity.

A sorry but familiar tale of resource and people-power deficits that I thought I could overcome by just working myself harder. For longer.

A culture driven too often by risk and finger pointing, not opportunity and teamwork that I thought I could overcome by imagining I was wearing a coat of armour at my desk, deflecting arrows as they flew.

The stuff of fantasy. But not the marshmallow kind.

But none of this is news to anyone who has picked up a newspaper or switched on the tv in recent months. It’s health and social care. It’s the UK. There’s not enough money. Not enough people. And what happens then? People have a crap time at work and do a worse job.

But I held on too long. Why? Because it matters to me that I work. That I have a career. That what I do makes a difference. That as a mother of a disabled child I will cling on by my fingernails to the opportunity for financial independence and career development. Because I know others want that too. I have campaigned about the rights of mothers of disabled children to have careers, too hard to just give it up. So walking out the door on an intolerable situation was out of the question.

In the end, my brain and body did it for me. Pushing too hard for too long eventually saw me unable to get out of bed bar a visit to the GP to find out why I felt like I was dying. Why I thought I was having heart attacks in the middle of the night. Why I couldn’t sleep. Why I spent two weeks on leave from work in the summer that I don’t remember a minute of.

It was a wake up call.

Months on and I have resigned from my job, with shiny new (non-public sector) work waiting for me just the other side of Christmas. I have started boxing again. Seen friends I haven’t seen in months. Taken up a new writing hobby as a theatre critic. And opened up this blog again to find a raft of messages from readers I didn’t know were reading but have given me a refreshed sense of why I write.

Because this matters. And I can make change happen here. I don’t need to work inside the system to do it.

 

Promises to a friend

Words. Words have the power to build us up and to tear us down. They bring joy and laughter, sometimes sadness, sometimes hope. They can unite us, divide us, inspire us and ignite us. They can connect us and help us to understand our world, this weird, wonderful, bewildering and cruel world.

It’s one of the reasons I started this blog. There were words in my head that needed to come out. I hadn’t known what to do with them. They flew this way and that looking for a home and never quite finding a resting place. Finding a connection in the words of others encouraged me to start writing it all down. And the connections grew, blossoming behind the screen into friendships.

Over time I imagined this would become an uplifting, hopeful place, full of laughter, encouragement and joy as we traced our path through raising Orange, giving other families hope too, perhaps, that this will be ok. You are not alone. There is always hope.

But it can be all too easy to paint a picture. To gloss over the hard bits for fear of bringing people down or perpetuating the myth that life with a disabled child is nothing but tragic and awful.

Which it isn’t.

There is joy, there is hope, there is laughter, there is love. But there is also pain, there is also fear, there is also sadness and there is also loss. Because that, right there, is life.

Pretending everything is marvellous all of the time would be, of course, ridiculous. But more than that it can lead us to feel that we should always be thankful and joyous and full of gratitude and aren’t we lucky all of the time.

That the answer to ‘how are you?’ should always be ‘good, thanks‘. That we should quickly move on from difficult emotions well before we are ready.

While a little bit of gloss can be uplifting, go too heavy and it quickly becomes isolating. Silencing.

Sometimes when people are in the greatest of need.

Because words are at their most powerful precisely when the chips are so far down the cliff you wonder if they haven’t actually drowned. It is in these moments, when simple words on a page, told truthfully, letter by letter, can keep your head above water, even when your heart is in the sole of your boots.

For much the same reasons as my friend Alison, I haven’t written anything since June. In her beautiful and honest writing about friendship after loss, she has captured tenderly why neither she, nor I, have written over the summer. Our heads and hearts were full of someone else’s story, that wasn’t ours to tell.

But also, I really didn’t know what to write. Because I panicked and wanted to gloss. To paint over the pain, the fear and the loss facing dear friends to make it go away. That if I just imagined hard enough that it would be ok, if I hoped high enough, that a miracle would happen, that magically life would somehow return to normal and they wouldn’t be saying goodbye to their little boy.

I couldn’t do that.

But I can do this.

I can promise to listen.

I cannot know the depth of your grief but I can see you through your tears. I am here. I will ask you how you are, don’t hold back, dear friend. I am here.

I can promise to be patient.

Grief is the proof that you loved well, dear friend. Time has no place here in judgement. While you grieve, I grieve with you.

I can promise to lift you up when you are ready.

I cannot know what the future will be, dear friend, for you nor I. I cannot try to fix the unfixable. I do not have the answers. There is no handbook. But I can be here beside you and I promise to be present. I have no expectations of what your grief should bring. If you need to vent, I am here, if you need to cry, I am here, if you need to laugh, I am here too.

And when you are ready, dear friend, I will be here with words of hope and encouragement. I may not always get them right but I promise to try.

Most of all, I can promise not to gloss.

So, dear friend, I will not try to distract you from your grief nor hurry along your tears. While I am far away in distance I am with you in this. I will not shy away because I cannot find the words.

“Remember, that grief never asks you to let go of love”                         Ashley Davis Prend

You can vote for my brilliant friend and her honest, raw, funny and totally gloss free blog Are You Kiddingney in this year’s Mumsnet Blogging Awards.

 

So, who wants a holiday then?

If you’re in the UK and you’ve looked out the window pretty much any time at all since 2016 began (or what feels like since the dawn of time) you’ll have noticed that it has been grey, rainy and distinctly dismal. And there’s nothing like a bit of dreary British weather to spark off a little holiday browsing.

It’s been over seven years since we went on a holiday abroad together. It’s something we have never done since Orange arrived, partly through fear of what may happen while we are abroad, partly because other financial priorities have prevailed and partly because it’s been so long we’ve got a little decision phobic – if we’re going to fork out for a holiday abroad after so long, it had better be a damn good one, but where to start?

When I was growing up, we didn’t go on what I would call normal holidays. Most families we knew would choose a week in France, perhaps Spain, maybe the States or the Caribbean or a winter ski trip. Whereas our family holidays were distinctly more rustic and, er, character building. Usually involving tents and fields, often in force ten gales. Or if we were lucky, a really ancient house with mice that ran around in frying pans in the night or lobsters that arrived on the front doorstep in a bucket, still alive, ready for us to literally boil them to death and hack them to pieces with a hammer.

Often there were lots of very long walks. Not because they were supposed to be long, but because someone thought it was a good idea to go off-route and promptly got us lost. Pretty much always in the rain or a thick blanket of fog. And nowhere near a pub.

These holidays obviously struck a chord somewhere because now we live right on the shoreline in Cornwall so we can experience these interestingly windswept meteoroligical conditions and wildlife encounters any month of the year.

2015-03-23 10.46.46 HDR

One of the lovely things about living in Cornwall though, is that when the sun does come out, we are right here to enjoy it. We have been very lucky and had some cracking summers since we moved here and I guess this has allowed us to fall into a certain malaise about actually booking a holiday.

2015-04-06 12.25.13

Image for PR With a View

We’ve been able to avoid the difficult questions brought about by Orange’s needs such as special assistance at airports and whether the accessible rooms in the hotel are up to scratch.

The thing is, though, we want our children to experience the world just like their peers do. But browsing for holidays knowing you need to factor in an Orange is not straightforward. My hopes were high two weeks ago when I found a beautiful resort in Greece. Ikos Resorts – everything I would want from a holiday. A little luxury, eco-credentials, great food and enough activities to swerve couch-potato-dom. We really liked the look of their bungalow suites with private pool. Spacious, perfect for all of Orange’s kit. Private pool, spot on for two little water babies and two exhausted grown ups. Stylish too. Excited, I got in touch.

“Sorry, our bungalows are not accessible” was the reply. “You might be interested in our disabled bedrooms in the main building. But they aren’t for families.” Oh.

And this has pretty much been the story of my holiday search so far. Even the legendary Scott Dunn didn’t have anything that would suit. Almost unanimously, what ‘accessible room’ means is a room for an elderly couple. Not a family with a complex little dude and a riotous seven year old.

Slightly crestfallen, I started looking at tour operators who specialise in holidays for people with disabilities. But their ranges were limited in a whole different kind of way. Call me spoilt, but I don’t want to spend my summer holiday in a static caravan in Wales or in a Costa del Complex that looks like something out of Holiday Nightmares.

We haven’t yet found the perfect holiday for us, but the whole experience of searching has got me thinking about what would make the perfect holiday for us:

  • Guaranteed sunshine and just enough warmth to make swimwear the outfit of the day. Not too much though as Orange won’t cope.
  • Luxurious accommodation of the white fluffy towel variety. Infinity pools with a pool hoist. Space. Peace. Quiet. A few well behaved children from naice families for Bea to play with.
  • A gentle, flat stroll in to a pretty marina, with waterfront restaurants that will welcome the children, accommodate a wheelchair and spoil us with gastronomic delights. And wine. Lots.
  • A nanny on hand who has experience of complicated little dudes, is confident using a hoist, feeding small people who can’t chew and administering medication (I know, I know).
  • Flights and airport transfers that can accommodate a tiny wheelchair user with ease and confidence. With dignity for Orange, and peace of mind for us. And a huge luggage allowance.
  • Simple arrangements to send equipment and supplies ahead of time – special milk, medication, nappies, specialist car seat, a beach buggy and a specialist bed. Probably a mobile hoist too.
  • Four hours or less flight from the UK, with sensible flight times that don’t involve hauling ourselves out of bed at sparrowfart.

All of this, but for less than a gazillion pounds, please.

Mark Warner are looking for ambassador families to be part of #MarkWarnerMum and #MarkWarnerDad. I guess this post is a little bit of an inclusivity challenge for Mark Warner, as we have found that most luxury travel companies (and non-luxury travel companies too), don’t really acknowledge that there are families with more complicated requirements than the average who want to go on lovely holidays too.

It would mean the world to us to be able to travel on a lovely holiday as a family. To do normal things, in our slightly abnormal circumstances, but also to make memories too. We don’t know how long we’ve got Orange with us, being brutally honest. And while it’s hard to think that way, we must remember that life is often short, sometimes shorter than you might anticipate. And if we want to do things like travel as a family, we must find a way to do them now.

****This is my entry to become a #MarkWarnerMum for 2016. Wish us luck****

What would be your ideal holiday?