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…

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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.

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

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.

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What about Godzilla next time, Dad…?

Planning… always planning…

Small starts school in September.

It amazes me that he’s grown that much that here we are… on the brink of what I sometimes think is just ridiculous. He’ll be one of the babies of his year as he’s July born and, well, when Big started school she was ready – more than ready – to go. She’d outgrown nursery and all that it offered and wanted and needed to learn more, in a different setting.

If I could, I’d keep Small at nursery forever, with his wonderful, thoughtful carers.

I suspect this would be doing him a disservice.

Whilst Small cannot talk, he cannot walk, he cannot eat without assistance, the Small-ness of Small is coming through and there is much that he will benefit from at school. We had asked for a dual placement so that he can get all the benefits of an SN school with the socialisation of the mainstream school that is, quite literally, across the car park. It is also the school that Big attends and so for one year I get to fulfil my not very big dream – and yet one that every parents just assumes will happen – of my children being at the same school. Just as it should be, If only for some of the time.

His SN school has suggested a clever plan. That they create his very own, very individual timetable, that they place the very important things into the week – his two sessions of hydro, his one session of swimming, his physio, horse riding (horse riding!) and then ask the mainstream school to perhaps tailor their week so that the fun things we’d like Small to be included in – music, art, singing, hanging out with the other kids – could perhaps fall into the other parts of his week. I love them for thinking like that, and I think it would work. Small is never going to be academic, no university education for him, but he will enjoy and benefit from these activities and I’m so glad that these people, who barely know him, are thinking so intuitively about his needs.

… there is a part of me that has broken today. When Big started school we scoured ofsted reports, wanted to know about after school activities… we were excited for her. This Big Step. But today for Small we talked a lot about toileting, feeding, manual handling, hoists… So, quite reasonably – for his own safety and that of the staff – for a little moment he became a project, a logistic that needed solving which led my husband and I to wonder if it was time to move from SN buggy to wheelchair. This step that I am not ready for. I am not ready to sing ‘Disabled!’ as I take him to school. For all that he definitely is. For he is still my little boy. Who just needs pushing for longer than you’d expect.

And I still have to square that circle. That nothing we do with him can be spontaneous. It must be planned. Rigorously. So much more so than if he were ‘neuro typical’. And I have to remember to give myself a break after these meetings, these planning sessions, just to re-group, to re-orientate my brain almost because these are tiring and these are emotional conversations…

So school planning –‘Transition’– starts early. So by September, when he starts, the manual handling training will be done, the hoists will be in place, the evacuation plan will be written… all the stuff that is about my little boy, but is not my little boy, will be done… so we can concentrate on him enjoying school, benefiting from all those wonderful activities. And so I get to take that happy first day of school picture.

Just like every other parent.

On the wonderful-ness of imperfections

Nobody asks to have a disabled child. I can think of none of my contemporaries who would have sat down in their NCT class and said:
‘I’d like a child with disabilities please. I’d like to spend the first year in a state of total confusion, not knowing if they will see their first birthday. Moreover I’d like to spend all the times I’d usually have spent at baby group – discussing poo or lack of sleep – in a hospital near me, getting on first name terms with the A&E nurses. Lastly, as they grow up, I’d like to never really know if they will be able to walk or talk – I like a challenge’.

This is not what we ask for. This is not what we envision.

Society is afraid of imperfections. Our glances slide over the things, the people, we don’t wish to see, are somehow embarrassed of or embarrassed for. We fear the unknown. Would prefer to box it away in special schools and special homes. Out of sight so we are not reminded of our own frailties. But it is not so scary. There will always be imperfections, because they are what shines the light on all of us, and surely better to embrace them?

We say this with a knowing nod, we know it is a cliche, but I am a better person and my life is richer for having Small. He has taught me so much about myself and life that I would never have unearthed otherwise…

… I’ve stopped sweating so much of the small stuff. I’d be a liar to say that a messy house doesn’t bother me, or that I didn’t wish I had the energy to pick up the dropped food from the floor every single meal time. But I’ve learnt not to always do it, and that time spent with Small, just playing, cuddling, giggling, that’s what makes us both happy.

… We try to make the most of time. This isn’t as big as it sounds. We don’t do Great Big Symbolic gestures, huge presents, but we try and find a positive. Not every day, because some days are just so awful – so awful – that all I want is for them to end, but most days. What good thing happened recently? This did. Small kissed his Daddy. He asked him and he kissed him. Today was a more gallows humour moment over, should we get a stairlift, what a great way of conveying the laundry up the stairs it would be.

… I’ve stopped tolerating bureaucracy, being accepting of the easy option of It Will Do. I’ve started complaining. This most times revolves around Small, but who else will be his voice, his advocate? So I question more – why isn’t this in place? has this been thought about? who can help me do this thing? It’s wearing, but getting a result, moving a process forwards. Huzzah.

… I am more patient. Developmentally Small gets there in his own time and there’s only so much I can push him along. Getting grumpy that today he doesn’t want to practise the saving reflex over the peanut ball, that today he just wants to roll around giggling whilst I try and manhandle my slippery fish of a boy over it… that helps noone. So we stop, try something different. Or we go for a walk. Smell the fresh air. Give in a little to my little boy who’s just a boy. This also applies to simply getting out of the door. Small has so many ‘accompaniments’ that anything less than 10 minutes can’t be done. So there.

… I relish movement. Watching Small fighting against his body to turn around, reach a toy has made me appreciate my own body. The ease with which I can get dressed, walk up stairs, do up my buttons… it is a small miracle that I take notice of and am grateful for every day. And watching Big… I am not sad for Small, just happy and grateful for her ease of movement. Every day.

… I have met, and spoken to, the most wonderful group of parents that I would never have met but for Small. You all know who you are.

… I am always tired. But I think this may be just parenting.

If Small had been… not-Small, if he had been a’normal’ neuro-typical little chap my life would have been different. Less challenging maybe, less sad for sure and my back and knees in better shape. He has taught me a lot, this wise boy of mine and for that, and for the wide-eyed cheekiness that he has, for the blink-and-you’ll-miss-it wonder of his development, the motivation he now has to get that thing, THAT THING MUMMY!!!! I love him, and would have him no other way.

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?

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