This is my Child

I often wonder what people really see when they look at Small.

If you just looked at him for the briefest of seconds there, in his buggy, watching his sister being pushed on the swing, you might think nothing. Or you might think, ‘Well, what a lovely scene’.

But if you looked closer, for more than a second, you might see more. You would see that his buggy was, well, oversize? for a child of his age, he’s 3, right? Surely he could just manage in a MacLaren. Well, no, he can’t walk you see, so he needs something comfortable to sit in for long periods of time. And because he has hypotonia – low muscle tone, a bit floppy if you like – he needs those supportive struts on the side. You would see that he flaps – both arms and legs – which is unusual in a child. Not for Small, he loves a good flap. It’s incredibly sensory for him, he loves the feel of air on his limbs, it gives him a sense of self in space. And you would see that he isn’t necessarily looking at his sister, he’s looking at, well, it’s not clear actually. No, and it isn’t to me either. He has CVI – Cortical Visual Impairment (you’ll have to look this one up) – but, essentially it means that what he’s looking at isn’t necessarily what he’s seeing. He might be looking at Big, way up high in the air, but what he’s seeing is a small boy running across the payground.

From all this you might extrapolate out… oh no, he’s disabled, poor, poor them. Thank God that’s not me, and you’d walk off. But you’re only getting half the story. Granted, this is not a path I would ever have chosen. It is, without doubt, the hardest thing I’ve ever done. A disabled child in the family affects everything and that maternal guilt we all get with ‘normal’ kids? Double it. The effects ripple out to your marriage, your career, your friends who, with the best will in the world, just Do Not Get It. And the siblings… Good God the siblings. Always placed second in order that the other child is happy, has done their therapy, is asleep.

However, like in Sleeping Beauty with the magical last fairy that just turns it around from awful to actually ok… here is the more than ok. A disabled child holds a mirror up to life. You learn to really value things. Achievements when they happen are huge, they are not taken for granted. You learn to stop moaning about the little things, because the big things are the only things that matter. And they are still children. I can only speak for us and Small here, but Small finds things funny, he is so easily amused and we queue to make him laugh. He is amiable, good-natured, able to play by himself. And now that he can sit up, the world is his oyster.

I have seen such kindness in people who just want to help. And Big. She adores Small. And Small. He worships Big. Big and I were sat at breakfast the other day and she said, ‘When I grow up Mummy I want to be a Ninja, a writer and a teacher to SWAN children to help them learn’. And I paused, not wanting to say too much or tell her how happy that made me and said, ‘That’s lovely Big, but see how you feel when you’re older?’
‘Well, I definitely want to be a ninja!’ She is only 7…
But the point is, and here I know it’s not just me, having a disabled sibling has made our other children more considerate human beings. And hurrah for that.

As with all children, Small is more than just the sum of his parts – you just have to look a little closer.

Small is my child, This is my Child.

Thank you for supporting Mumsnet’s This is My Child Campaign:
http://www.mumsnet.com/campaigns/this-is-my-child

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When the bees sting…

Whenever I think about writing this post I always end up humming ‘Favourite Things’ from the Sound of Music. I don’t know why. Maybe because it’s a list. So I’m writing this if only to get it out of my head.

Here are some of the things that scare me:

I worry that life rather than getting easier, as it should as your children get older, will get harder. Small, bless him, is a healthy chap and loves his food so one of the few things I don’t have to worry about is his weight and how much he’s growing. However, because he doesn’t walk I worry about his weight and how much he’s growing. It gets harder to manhandle a 3 year old boy into the correct physio crawling position as his legs splay out over my arms and his head slips out of my hands. It gets harder to shloop him into the car without banging his head on the ceiling. The thought of getting him up stairs to bed, up two flights, well, I breathe in and I do it, but I cannot wait to move his bed downstairs. What will happen when I can no longer carry him? How much more can my body take? I’m constantly surprised by my body’s answer to this but there must, surely, be a limit?

I worry about how life will change when Small goes to school. First I have to find a school. Finding a school for Big was easy – we looked at 3, chose the one we thought she’d fit and we liked and were lucky enough to get it. With Small… there are so many more variables. There is only one SN school in town. It is a small school, with about 45 pupils spread over the 5-16 range. There is only one child in reception. And their needs are different to Smalls, they have learning difficulties, but they can all walk. They’re all set up to accommodate a pupil like Small, but sometimes I don’t want to trailblaze. There are other, better-equipped SN schools out of town but that will involve transport of 30 minutes plus, and how then does that affect the rest of our lives? How do we work? Get Big to school too?

I worry that I may never get back to work full time. Or worse, have to give up my job. I see other mums slowly regaining their careers as their children get older and… well, I don’t know. My work is important to me for many reasons. It gives me a huge sense of self, I don’t want to only be Big and Small’s Mum I want to be my own person too. But combining it with two children (one of which has additional needs) at school, with all those holidays to fill… What will happen when he starts school next year? It’s unspoken but I’m going to have to give up work to settle him in and good God what then? Me at home full time is an awful thing, I become crabby and irritable (as has been more than adequately shown on my two maternity leaves) as the four walls close in and I focus on the wiping and dusting as it’s all I’m able to control.

These are just some of the things Too Big to talk about. They are too far away, too subject to variables and out of my control, and most times I can squeeze the lid back on. Sometimes, around 3am in the morning, they crawl out again and leave me in a cold sweat.

Learn to expect the unexpected…

The age of three is a big milestone in any child’s life (with Big it finally meant we could launch her into the toys that had prevented her from playing with them – due to their having a great big line through the 0-3 option) but with Small, these milestones are different. At 3 – and not walking – he qualifies for a disabled parking badge and also an allowance to lease a car. The car is important as, as Small grows into not-so-Small, we will need a bigger car to fit in all his gear. Ultimately, our Ford Focus has got to go.

We talk, my forum buddies and I about the ‘benefits’ we gain through having disabled children. Think of the shiny new car, the free parking, the standing frame that’s so handy to balance the post on, not to mention the jump-to-the-front-of-the-queue pass you get at theme parks. Really, we say, what are we complaining about? We all know, we all know… we would swap it all in a heartbeat to bring back normality and erase the uncertainty from our lives.

Gallows humour is always present as a parent of a disabled child. It’s yet another of our coping strategies.

And yet. There are the most surprising benefits to be had from our disabled children. I have been catapulted out of my comfy two parent/ two children bubble into a whole other world, which can be truly surprising. Through being thrown up against the coalface of the NHS I have seen how amazingly well it works when it matters. Without a doubt it is stretched to its maximum and resources for long term care are patchy and under-funded… but when it matters, they are there. I have come across the most caring of individuals who care about my boy and want to provide the best support for him -and us – that they can. I have been staggered by their humanity and compassion. Just thinking about Small’s wonderful carer and how her actions have kept our family together, and made us happy, makes me cry. We celebrate the here and now, focus much less on what’s coming up in life. We stop, realise and take a breath when life is good. We mark it when we are happy. We sweat the little things less because at least we are all still here. And Small. Small is just happy to be alive and his delight at life – cliched though I know this sounds – is a lesson for all three of us.

Complicated Gorgeousness has written about this far better than I here:

http://complicatedgorgeousness.blogspot.co.uk/2013/08/sometimes.html