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).



Leaving the Smalls…

Ssh, listen, can you hear that? It’s the sound of plane tickets being booked.

Many many years ago my father, of Antipodean extraction, decided he’d had enough of the English weather and skipped off back to the country of his birth leaving my brother and I… a little bereft. I’m not sure Dad ever got it, why we felt we were being abandoned. But you’re grown up, his raised eyebrows seemed to say, you don’t really need me anymore. And the logical, 20-something side of my brain understood this, recognised this but still, you want your parents to be close, to be accessible in times of need – whether good or bad – and we lost this.

He has come back – he came for my brother’s wedding, again shortly after Big was born and again when she was 3. He has never met Small. We have visited too, but with young children for both of us, not to mention the huge expense of shipping a family of 4 by plane, and completely ignoring the fact that I am too absolutely-no-way scared to fly with Small, we haven’t seen him for 4 years. This is a long time. He’s now passed the 80 mark and, you know, ‘not getting any younger’. It’s time.

I am both exhilarated and scared out of my mind to the point of denial. This is not because I am frightened to fly. It is ‘freedom, adventure!’ versus ‘I am scared to leave my children’.

No. I am scared to leave Small.

He and I, we work in our little love bubble of two. It’s a funny world he and I inhabit, but it works and the other people in our lives, well, they fit into it, know their roles, but Small and I we are the lead actors. Our household broke into me and Small, OH and Big when Small when was born which I think is the usual order of things. When Small turned out to be… well, not what we’d anticipated, those teams never broke up.

I have never left him – either of them – for this long.

So, now, with enforced separation… I have to plan a childcare routine that will allow many, many things to happen. Big and Small still have to be got to school and nursery respectively. OH still needs to be able to work 5 days a week and these I think will be fine. But it’s the little things that I as me – mother, main carer, person-who-is-just-better-organised – do as a matter of course that now have to happen without me. Forms will need filling in, lunches will need making, clothes will need ironing… and so I am drafting in the big guns. Two lots of respite, two lots of parents will be on hand to help OH as he currently stands there trilling ‘La, la la’, with his fingers in his ears whenever I mention it.

Whilst I load up the Kindle and buy a new swimming costume. Well, it would be rude not to enjoy it a little, wouldn’t it?