A Precarious Balancing Act

Right now, right at this moment, my life feels almost balanced.

I am, to be honest, nervous of writing this down, of letting this cat jump out of its bag, in case the whole thing comes crashing down again.

I am still ably employed. *Shouts* ‘I, a parent of a disabled child, I am actually working!’ I am one of that shamefully low number – 16% of all mothers of disabled children – who have found, and maintained, employment.

I started a new job in August last year, only made possible by my OH opting to stay home and ferry the children between school and nursery and manage Small’s transition to school. I worried for him, it’s a hard job to do, but really? I think he quite enjoyed it, remembered how much fun – in their own, very special ways – the children can be. Their needs are poles apart but they are both, essentially, little kids, needing to be entertained and loved and when that is the only job you have to do, well, it has its rewarding moments. And it was good for him to be reminded of that.

More than a nod also has to go to a very understanding, very flexible, employer. These are people I’ve worked with before, who trust me to do the job well, who have allowed me to work one day in the office and two days at home when really, really, they’d like me in the office more. I had to make it really clear from the start that that was the only way I could take the job on – so scared they’d say no, that I’d have to walk away – but they didn’t. And it has worked.

My final piece of the jigsaw? Childcare. Childcare for Big is easy – there are childminders aplenty where we live, many of whom would gladly have taken her on… but Small? Where to start? ‘I’d like a childminder who has a house fitted with track and hoist… some training in manual handling… and the ability to give him 1:1 attention whilst all the other children run around unsupervised… no?’ The only way this would ever work was to find a Nanny. We had to find someone to see past his disabilities and love him. We wrote the fluffiest most beguiling ad we could think of and that brought us 3 lovely, but ultimately disappointing, candidates. Two we would happily have employed but they both went away and thought about it and… no… he was too much. My little boy? Too much? I got it. Not enough running around in the leaves… too much spoon feeding and potentially unnerving behaviour. Ready to take our ad down, I paid for one more week, just in case…

So – after three months of looking – N arrived. She is 19 – 19? And is unphased by my son. She has worked with disabled children before, she find his sounds and movements endearing, entertaining… she has ideas about sensory toys she wants to make for him… we can’t believe we’ve finally found someone to just ease our life and when she asked if she’d be needed over the summer holidays I physically relaxed. Really? She wants to stay? It takes a special person to work with our children but oh how amazing when you find them. But oh how hard it was to find her.

And oh how little were any central service able to help us with anything – after school care, holiday cover… and don’t get me started on respite. By having N in our life, OH has been able to go back to work too and suddenly… we’re that family we’d always assumed we would be, but had never thought would be possible. I am only too conscious of the precarious nature of this though. If N gets sick… there is no fall back position, no friend who can take Small and, again, we are reliant on employers’ understanding. This is a conundrum all working parents face, but I hope you can see the added layer of complications Small adds. There is a gaping hole here in the provision and encouragement of these services for children with additional needs that parents of neuro-typical children do not have to worry about. You can say ‘Oh, but luckily you’ve found someone’ and we have. But I would never want the fear of that process again.

Before having children there were three legs to my milking stool of life: Work/ Relationships/ House. If two of the three were broadly on track then all was well in the world. Lose one more leg though and bad things were brewing. Post-children (and especially post-Small) however, those legs have changed names. Let me introduce: Sleep/ Work/ Childcare.

(Not that relationships are no longer important, they’re just more of a sub-leg these days).

Every Disabled Child Matters is running a campaign to highlight how hard it is for families to access help – to get them back to work, to find respite, to access services, to stop feeling like a drain on society and to be included in it because, mainly, this is what we all want, but for those of us with children with additional needs… we need an additional hand and in an election year? it’s good to remind everyone of this. That the government needs to take a lead here, to help these families – families like us – to make a life. Society has realised these children are worth nurturing, worth pushing to live as independent a life as possible, but we need a broad base of help in order to do that. And it has to be a lead that comes from the top. Local services are just too broken.

Everyone deserves ‘normal’, whatever their definition of normal is.

You can read about the campaign here: (and please click on the link to send the campaign to all the parliamentary candidates in your area; the more noise we make, the more people have to listen).

http://e-activist.com/ea-action/action?ea.client.id=6&ea.campaign.id=34388&ea.tracking.id=facebook

We need to talk about this more…

Miscarriage.
What a word.
For me, at least, it says: ‘My body failed me. In my most basic task of reproduction’.

All miscarriage stories will be different, but they all have some common themes: hope, fear and a loss of dreams.

Getting pregnant with Big was, well, uncommonly easy. Second try, there she was, a little blue line. As I panicked about the wedding in France we’d just been to (with its accompanying red wine and soft cheese) she grew fat and healthy and was birthed through the ‘sunroof’ when she utterly refused to be turned. My little breach baby looked at me, mewled, and was place on my chest.

But after that… my body turned on me. I could not get pregnant again. We wondered if it was the passing of time, added stress in our lives… and then… oh, oh, look, yes that one has held.

Six weeks in I miscarried. The care – a phonecall – was brief, the pain like a really intense period… nothing anyone could do, no advise given, you clearly can get pregnant so off you go again.

Roll forward six months and I am pregnant again. We are tentative, we don’t tell anyone, though the telltale signs of my not drinking coffee are there for anyone to see. Eleven weeks, nearly there… but I start to spot. We go to A&E.
It is the weekend. No scans are available.
What..?
Go home, rest, we’ve booked you in for Monday.

But good God that Sunday night. I bleed. Proper ‘I think we’re losing the baby’ bleeding. My brother is called in to come and sleep at our house so Big can sleep through. We blue light to the hospital with me trying to stay calm. All the while having, I later realise, a full on rushed delivery. My body is expelling our child.

Retrospectively, the care is appalling.

I am in the triage centre for ages as one doctor after another comes and tells me I am miscarrying.

I am finally transferred to a single room, and a nurse gives me an injection, no explanation given before she does it, to hurry the process along. My husband has to leave to be there when Big wakes up, explain where Mummy is. I am left, on my own, to see this through. There is no support from the nurses.

We still have the scan booked in in the morning, and so I sit, in pain, surrounded by other women here for their first, second scans. They are excited. I am nervous, frightened, sleep and food-deprived. And still there is more to come… and it is only when the D&C is done, that I am transferred to a proper ward, away from the pregnant women, away from the ward where they put everyone who doesn’t fit anywhere else… that I meet someone who takes time to care. She is the first kind member of staff I have met in this whole, unbelievable, 24 hours. Everyone else has done their job efficiently, but with no empathy.

I am sent home. Technically, there is nothing wrong with me anymore.

There was no follow up care. I spent 3 days barely able to get out of bed. I was exhausted, drained – both mentally and physically. I couldn’t talk to anyone when they asked how I was. I cried a lot. No professional came to knock on the door to see how I – how we – were doing.

Left to manage our own emotions, our feelings of emptiness, still look after Big, this was a really difficult time for us. We could have done with more help. I wonder if people think that because you haven’t broken your leg, or a ‘real’ child hasn’t died (possibly not, but they were real dreams, real hopes), that actually it’s not a big deal.

It is a big deal.

Miscarriage isn’t talked about. It’s still a little taboo. Perhaps we’re back to failure again. Or maybe it’s because it’s all a bit, well, messy.

When we missed our 12 week scan – hello? – we were called and admonished for not cancelling. I hadn’t really felt I should have to do that myself. Had, foolishly, expected a little joined up NHS thinking.

There needs to be a sea change here. There is a staggeringly high proportion of women who miscarry every year. They all need kindness. Compassion. To be talked to.

Follow on care.

To be treated separately to the women who are celebrating their soon to be babies. So we can privately mourn the not to be babies. Mourn the life not had. To be enabled to move on.

Hello Small. *waves*

Mumsnet is running a campaign to improve miscarriage care in England & Wales. You can read about it here:

http://www.mumsnet.com/campaigns/miscarriage-care-campaign