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

Could I have a lift…?

‘I’m not sure how much longer I can carry him. And that makes me sad’.

This is a conversation we have at home frequently.

At just over 20kg Small is way over the limit of safe lifting and at just over 104cm high he’s also way over the limit of safety full stop. Sometimes it’s all I can do to contain him in my arms when my little boy starts to have an excited flap as we go downstairs for breakfast… Food, Mummy? Daddy? Woohoo!

At school – as he was at nursery – he is hoisted everywhere and by all accounts thoroughly enjoys the experience and, naturally, it protects the backs and the knees of the staff. And I know it’s brewing – for all the right reasons – at home as well. I have knocked it back on quite a few occasions, but it’s time…

We have had the people in to measure up our stairs for the stairlift, the ceilings for the track for the hoist and the bathroom for the most overly engineered bath in the world ever. There is a changing mat on top, which then lowers the bath-ee into the water, and then the bath itself raises up on hydraulics so the carer – Mummy?? – can wash the bath-ee in comfort. Bath-ee is a word, right? It is quite staggering. And thank you to whoever invented it as it means our small bathroom can accommodate it.

But my house is about to fill up with more Stuff. More Things. And it’s really In Your Face Disabled Stuff this time. It’s not a brightly coloured therapy mat or a gently re-designed high chair it’s a lot of quite ugly plastic that I never asked for. I know get over myself, but… I didn’t picture all this gear in my house when we decided to have children, it really wasn’t part of the Plan and so permit me a moment to shout that It’s Not Fair. And then, Pollyanna style, I can move on.

There is however a further thought that lurks in my mind. As Small is not verbal the relationship we have with him is, naturally, a very physical one. We can’t debate the finer points of Octonauts, or decide whether we prefer red cars to blue or even whether green foods are good for us, but we can tickle him to make him laugh, play music that makes him stop and smile and rough and tumble him all over the floor. He loves physical interaction – he reaches out for proper big hugs, he wants to be picked up… dear God… he loves being picked up. We pick him up to carry him from place to place, we pick him up to show him a different view, dance with him around the kitchen, we pick him up to comfort him when he’s sad. What happens when I really, truly cannot do that any more? Every parent wants to pick up their child, sit them on their lap, it’s the most natural thing in the world… and it will be hard to lose that. Equally, how do we replace it?

So, hooray that this equipment will be coming to practically ‘manage’ my son, my four year old child, but I’m hoping that before that arrives we can find some creative solutions to the emotional challenges to come – how to continue that physical bond with my little boy…

Solution searching (and not finding one)

I’m not wholly sure how to begin this one.

‘Oh for fuck’s sake’ seemed appropriate but, until now, this blogger hasn’t felt the need to swear.

But.

For fuck’s sake.

Here we are, this family of mine, stitched and held together by a variety of care providers and services and, the one we need most, beloved respite, is proving beyond elusive.

We have been bruised, my husband and I, by having this most basic of requests wrapped up in long meetings and long delayed reassessments of our needs. These are happening currently. It includes: three one hour sessions with our social worker where she sits and talks to me/ Big/ my husband and I about our life. She has to dig it up, from the start, with questions which I no longer know how to answer (What was he like – developmentally – at one? I really don’t know. You try remembering to put a marker in your son’s glacially moving sands) to ones which I don’t want to answer (how did that affect your daughter?). Nothing is private. The more information we hand over, the bigger the case notes become but, really, after every meeting I am wrung out.

There are also three sessions between her assistant and Small where he can play with him, get to know him and see what he’s like – as a person. Whilst this is ostensibly for Small’s benefit this is really to feed back into the Big Report.

And the stark truth of our situation is this:
Our current respite Carer does not want a bed that would accommodate Small in her house as she feels it wouldn’t work for the older children she cares for. This is totally her prerogative and we respect that but, as a result, our county is respite-free.

You’d think, across the entire county, not to mention the two next door, that someone would be either able to accommodate him or could be trained in order to do so. Apparently not. And when one of those involved in your son’s care says: have you considered taking legal advise? You know you’re in trouble.

We didn’t think we were asking for much but apparently we were asking for the world. I don’t want to fight, I don’t have the energy to fight and, as one other blogger so eloquently put it – really, where did this fighting talk come from?* I just want someone to not only acknowledge the problem, but work with us to find a solution. I come back to the same argument each time. Surely helping us – and all the families like us – is cheaper than taking those children into care? Why is it that social care continues to fire fight with no time to plan? How have we got here?

*http://premmeditations.wordpress.com/2014/10/20/fighting-talk/

An open letter…

To all of you who have input to our lives. Today though this is mainly for you in Social Services.

You cannot take away our respite.  We will fall apart.  You know this.

Small has, unsurprisingly in my opinion, been making physical developmental bounds.  Every single department: Physio, occupational therapy, visual impairment, nursery, now school… they have – you have – all been encouraging this.  He is not completely the sedentary chap he once was.  Give him something to pull up on – he will have a go.  This is good, everyone says, this is great progress they all cheer but, oops, we’ve just risk assessed his respite carers home and I’m sorry that’s suddenly a no go.  Have a good weekend!

Wait, sorry, what?

How could we have guessed his trajectory? you say.

No, no, this is not acceptable. Why don’t you plan for this? Why is there not a plan mapped out for your children? That way you can tweak it, but not crisis manage. How is this more efficient?

That meeting you had – why weren’t we told? why weren’t we invited? Why have we not sat down to find a solution?  Why did you just call the house, post-meeting, post-decision made and casually inform my husband?  Why did he have to press home to you, as firmly as he could, quite what this 30-minutes-in-the-making decision would do to our family?  Why did you make him have to find the right time to tell me?  To let me come home from work, put my children to bed and tell me, so that I dissolved in tears only in front of him? What good does that do to anyone?

In safe-guarding our son, deeming his bed no longer suitable for his needs – and staying the right side of health and safety in your tick box world – you do not safe guard our family.  You do not safe-guard our life.  What breaks me more, is that this should not be news to you, we have been here before.  Through increasing our respite provision last year, you saved out family from imploding.  I sometimes don’t think you saw how on the edge we were.  Respite gives us an even keel.  It gives us a valve to catch some normality. There are so many reasons that our respite is a necessity, not a luxury and I have posted on this before.  We spend time with Big, we spend time with our friends, our minds are able to stop worrying about Small and just relax… wander. 

Most of all: for that night that Small is away I sleep peacefully.  Without stress.  My nerves are not stretched that he may wake up, may shout, may need to be got up, tended to at 2 in the morning, that he may wake Big and ruin her day at school, that he may render me incapable to work through lack of sleep.   Continual ground down lack of sleep.  Often he doesn’t wake at all but every noise, every mumble in his sleep springs my mind awake. Stretches it to awake unrestfulness.  Knowing respite is coming, I can keep going.  Knowing I am trapped in this box, I’m not sure I can.

We have had to explain – yet again – that if you do not come to us with a solution you may have to have him. This is not a solution I even wish to countenance – and I think you rely on this – the idea of Small not being here, not being part of our life, ever-growing challenge that he is – is not an idea I can look at head on. It makes my heart contract. It makes my eyes water. For you know that we love him. But we need space to be kind to ourselves too. And this is something that every parent needs.

We are asking for some joined up, more holistic thinking. It cannot just be about the child. The child can be in the centre of the circle, but without attending to those who keep him there, he will fall away. Please don’t hide behind lists, phone calls unanswered. We have better things to do than have endless meetings with you too. We just want to function as a family. Help us to help you. Help us to help you keep him from being one more statistic in the wrong end of year column.

Think outside that box.

Tally up the cost of the bed he needs versus the cost of your having to take on his whole care package. Then come to us and help.

How fragile is this life?

I’ve felt the frailty of human life more keenly this past week. I suspect I’m not the only one.

Our Swan community has taken a battering of late. With our community ever growing and some of these beautiful children with more complex medical needs, it was possibly naive to assume bad news wouldn’t come our way but. Still. We are losing our children.

Losing? We haven’t lost, mislaid them. They are dying. These children, so young, so beginning on their paths, are dying. It is heartbreaking.

We share our downs as well as ups, which is what makes our band of Swan families so amazing. The warmth that floods out in times of true need is quite uplifting. But it is also heartbreaking. And occasionally I find I have to look away, if only in order to preserve my sense of self. To maintain my core. To not dissolve. I’m not proud of that.

You could say – if you were not in our situation – if you were looking in, unfettered by children with needs, that it was a blessing. That they have been released from their life (what life? you might say) and that their family can get back to some kind of normality now without the constant strain put on life by the child, the lack of sleep, the constant hospital visits… But it is not a blessing.
This is our normal.

When our children were born with their unique-nesses, their differences, their very swan-ness that makes them who they are, we grieved once. We grieved for the child they would never become and the life they would never lead and the family picture in our mind’s eye we had to alter. This grief has no timescale, it is there and it takes time to work through. On some level, it never leaves. But we adjust, we accommodate and we see the child they are, the life we think they will lead and the family life we will grow to have. And these are good and wonderful things.

No one should have to grieve twice.

And as with all things awful, we turn them, guiltily, on our own lives and we are grateful for our children, our life not ripped apart. And I look at my shadow, my constant companion, Small, in all his unique wonderfulness, and I watch him every day unfurl into my little boy… I am not blind to his difficulties, I am not blind to the time he takes up, the emotional capacity he leaches from me – the sheer intensity of it sometimes leaving me unable to give Big all she needs – I see how sometimes he looks like a little old man and I wish I could see into his future. A little Flash Forward moment. But this is not how life works.

So instead.

I just hope.

We all hope.

Listen…

Small is talking.

Not actually talking you understand otherwise, yes, you’d be right in thinking I’ve skipped a few stages in the telling. But we are hearing proper babble. It crept up on us on holiday. He was ‘singing’ more. You know the Clangers? Suddenly there was one living in our house…. ‘Ooh ooh… Loo… Loo…ooh’. It’s beautiful to hear. It might not be to the outside world, but to us? Oh my goodness.

And then. Proper sounds. Suddenly we have ‘Bbbbb…’, ‘Yyyyy…’, ‘Ddddd…’ And these in turn run into M’s and Muh’s and lovely giggly Guh’s… And suddenly we see a developmental stage just slipping in there, under the door. I can hear his voice.

I have to repeat that sentence: I can hear his voice.

And it was only when I realised that I could, that I saw how much that actually meant to me. This is how pre-schooler Small sounds. And it is a sweet sweet sound.

Sometimes he even directs the right sound at me, his father or his sister, but he’s equally likely to direct it at his favourite toy (it’s a ladybird), the coloured glass panels on the front door or the lovely lady in Sainsbury’s who always comes over to say hello. (She’s clocked him, this too big to be sitting in a trolley boy, and she’s so lovely to him). But we don’t mind. It’s just so nice to have both my children talking to me from the backseat of the car and there are moments – when Big can no longer be distracted from talking about the intricacies of Minecraft – that they make as much sense as each other :-). But it’s how it should be. Both children making themselves heard.

Last week, in a bid to add more process to our lives, Big suggested that every time Small made a sound we should give him a toy, to encourage more sounds (sound = toy, must make more sounds…?) I explained that current thinking was that you should mirror the sound back – so Small knows that his making a sound encourages you to make a sound, so you are concentrating on and encouraging him.

And she did.

And then Small knocked on the car window and so did Big and then Small kicked his feet on the car seat and so did Big and all of a suddenly there were my children… Interacting and giggling. Just like I’d always hoped they would, but had never been sure they could.

There’s that normal again.

Oh yay, swimming again! No Mummy, it’s not too cold!!

On loss…

My best friend buried her baby today.

This is a sentence no one should ever have to write though I think it is more common than we know.

This beautiful girl, born 4 months ago, has stopped living before she even started. She’d only just got going. She was loved. She was wanted. She was not ill. She was not sickly. She bounced. She giggled. She was cuddled. And yet still. She is gone.

An unexplained medical anomaly brought this news to my phone 24 hours after her mother and I had been texting about the house she was looking to buy. To set up her completed family. She’d always felt that three children was the right number. So complete… the next chapter had begun. And now they are one less. There is a hole. I don’t know how it can ever be filled.

We talk, she and I, about the parallels between our lives, and how there are similarities between having a child die and having a child with disabilities. She’d brought this up, though it had struck me too.

It is a life unfulfilled, it is the life you’d expected forever changed, it is you forever changed. You take a path few you know have trodden. It is achingly lonely.

She noticed people said the same things. They say: I can’t imagine how you must be feeling.
She said: You can. Imagine your child has died. Feel that. Then double it and double it and double it some more.
I said: People can, but everyone’s grief is different. People worry that by saying I feel your pain you may say How can you? Your child is still living? And what answer is there to that?

People say: I don’t know what to say.
She said: even by saying that, you are acknowledging my grief. Thank you.

People said: we are praying for you.
She said: I don’t have religion, but thank you, this gives me surprising comfort.

Me, I’ve noticed the paucity of the English language when it comes to grief. We have words in abundance when it comes to love but death, misfortune…? We are lacking. Our tongues slip away from the words, sliding the other way. We do not want our words to intrude on someone else’s grief for fear they are wrong, but without trying, without reaching across, we leave people isolated when really they need people the most.

What I wanted to say was: I am so sorry. I am so so sorry for this heart wrenching pain that you must be feeling, I want to make it go away. I want to fix this. Because in Small I have felt a tiny part of this and much as he brings me untold joy, I wouldn’t wish that loss of dreams on anyone.

But what I said was: I am sorry, she was beautiful. And I am here. And I’m sending love and strength. Because that’s all I uselessly have.

Today my best friend buries her daughter. And now what? Where does her life go now? There is a long long journey back to any kind of normal. I know it scares her. It scared me too. And I can only hope I can be there for her as much – or as little – as she needs. If our situations were reversed, I know she would have the right words.

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

Caring about carers

I am a carer. Not just a parent, a carer. I know this. I know that all I do for Small – get him up (because he can’t get up himself), change his nappy (because he is still in them and won’t be coming out any time soon), get him dressed (because he can’t do this himself), take him down for breakfast (because he cannot walk), strap him in his highchair (because he doesn’t have enough sense of danger not to know that leaning out of it at a ninety degree angle might hurt him), feed him breakfast (because he can’t dig into his weetabix with his spoon)… you get the idea… is way above and beyond what I should be doing for a boy who is 4 next month. (4? I know..) And yet I do it, because it is what he needs to get through the every day and most times, I don’t think about it, it’s just what we do. But I recognise the extra strain it places on our life. The physical strain it puts on my body and the strain it puts on our day in terms of time it takes to get places, and the places and events that we can and cannot access. Picnic in the park? Thank you very much. Lunch in a cafe down a steep cobbled street? Thanks, but we’ll pass.

This is why I am so grateful to the other carers in our life who help to take that strain.

To the nursery workers who sit with him to make sure he interacts with activities as much as he can, who get him outside to enjoy the fresh air and the sunshine and who slowly, slowly makes sure he eats. Small loves loves his food, it just can take a mind-numbing while to get it in.

I am grateful to our initial respite worker who recognised that I was on my knees, could not see a way through my life and just took Small overnight, let me sleep, uninterrupted, and find a way to get all our lives back on track. Every other week she took him into her home, made him a part of her family. It was clear how much they enjoyed having him and clear how much he enjoyed being there. Society sees our children with disabilities as a bit of an irritating burden sometimes I think, but Small gives so much back in his laughs, and his cuddles and his enjoyment of just being In The Room (as someone so bluntly, but accurately, put it: ‘he’s a lot more ‘here’ isn’t he?’ Yes, yes he is…).

I am grateful to our current respite worker, who has taken him on, got to know him, worked with us to get to know who he is… so I can sleep easy knowing that he is safe, and cared for. And when he is away my head has time to empty out. I can hear quiet. So there is room to fill it up once more when he returns.

I understand that all these wonderful people do this as a job, they are paid. But I cannot believe anyone would put themselves into a caring role if they did not care. I see them go the extra mile and I know that they do. They care.

There is a man walks down out street… he’s about 40, I think. Every day he is ‘walked’ – no better word – twice a day by people who I assume must be his carers. He walks with an awkward gait, makes guttural noises as he walks and wears the helmet of someone who fits, or faints, for no reason. Every day, come rain or shine, off they go, round the park. This could be my son in 40 years time.

When I am dead and gone I hope, I so hope, that there are still people around who want to be Small’s carers, who will take him out, walk him, bring him out into the open to be part of the world. His sister will not be able – and should not have to – deal with it all by herself. This is what our ‘big’ society is for. This is what makes us human – the connections we make with, and the support we give to – other people. Otherwise, why are we here?

Some just need it more than most.

Next week is #CarersWeek. Shout it out, support it. These people, these incredibly people who do it through necessity or through vocation, they’re worth it.

You can find more information on Carers Week here: http://www.carersweek.org/

Parallel Lives

When I became pregnant with Big, I realised how I saw the world, and reacted with it, would never be the same again. I hadn’t somehow allowed for that. I would cry at everything, even if it had no relation to parenthood; news stories, films, adverts… suddenly these things that I had previously interacted with on something of a purely transactional basis – somehow were now affecting my core. A seismic shift if you like. Parenting pulls us out of that wonderful self-centred bubble and propels us towards connections…

And so it is with being the parent of a disabled child. Only in ways I hadn’t anticipated either.

In hindsight, going to watch ‘The Curious Incident of the Dog in the night-time’ probably wasn’t the best choice of a night out for OH and I. Our local theatre has linked up with all things NT Live, so off we went, excited at a night out. No children. Wonderful babysitter.

If you’ve not read the book it’s essentially the story of a boy who is on the spectrum – though this is never talked about explicitly – investigating the murder of his next door neighbour’s dog.

We had both read this book in those carefree hedonistic days of pre-children that I mentioned earlier. And we’d both enjoyed it, found it a fascinating read. I remember finding Christopher, the protagonist, interesting, enjoyed being allowed in to his headspace to see how he thought and reacted with the world. I smiled, indulgently, at the way in which he coped with the day to day.

But seeing this on stage, hearing the words lifted from the page… Watching him curl up in a ball to hum in order to block out the policeman talking to him… counting up prime numbers in order to stay calm… the way in which he Would Not let anyone touch him. This pulled on every single maternal strand I had. I empathised with his parents not knowing quite what to do, their frustrations with life turning out the way it had, their overwhelming love and need to protect their child… and I saw my own fear at Small getting bigger and how our life could change too.

Some of this world is my world now. And it turns out that I can’t watch it played out in front of me.

What broke me, made me suggest we didn’t come back for the second half was this…

Christopher is describing another child at school. This child, he says, isn’t even as clever as the dog who has died. This child he says, has to be fed with a spoon. He would never be able to fetch a stick even.

The audience laughed. Not horribly, but they laughed.
In a previous life I probably would have too.
But this child he was describing? He could have been my son. My son in whose achievement of being able to eat off a spoon I am immeasurably proud.
And so there was this divide between me… and the rest of the audience.
Who did not know this world.

This is not a critiscism of the play, or the audience. This gives us an insight into Christopher, how he thinks, where he ranks himself in the world – against other people – as we all do. But it made me sad. I didn’t find it socially unacceptable, just personally unpalatable. There is a difference, I think.

At the interval we departed. We were That Couple. We went to the pub, drank wine, and deconstructed the awfulness of not knowing if we should ask the other ‘Can we leave?’ but so pleased that we had. In a mark of how far we as a couple have come… we did not cry… it did not ruin the evening… no-one berated the other for a shocking choice made… we just recognised that: when we go out, all things disability are off the menu.

What about Godzilla next time, Dad…?