Life in the Small Lane

I think it’s important to tell you that I do not think my life is over. Or terrible. Or that I feel that somehow by having a disabled child I’m paying for something bad I did in a previous life. I really don’t. Hand on heart, for me, it really is just bad DNA luck (and sometimes good luck – who knew I’d feel that way?). No doubt life is challenging here but, currently, I don’t have trouble getting out of bed every morning. Well, I do, but not because I can’t face it, I just can’t face the time. For some reason we thought shabby chic bare floorboards in our rattly Victorian home was a good idea – so not only do they let in the wind they also aid the travel of the sound of Small waking up at 6 o’clock. Closely followed by giggles, hand clapping and rampant thumping of his feet on the bed in delight. Repeat till Mummy gets up. But anyway…

What I hadn’t banked on was the constant comparisons. I had somehow thought that by having a disabled child I’d be on this great big mythical boat with lots of other disabled children and their equally befuddled parents as we all tried to navigate this different life with whatever care and support we required. But actually, to continue the analogy, there are many separate boats and they all seem to look very different to each other.

Pre-Small I hadn’t realised the extent of the word disability – what does it mean? At that point to me it had really meant Kid in a Wheelchair. But it doesn’t. It can mean so many different things – child unable to walk, child unable to get out of bed or get dressed, child unable to eat very much, child tube-fed, child unable to deal with loud noises without dissolving into thrashing tears in the middle of the supermarket. I could go on. Most of you know what I mean. And quite often it’s a combination of at least 10 very different items from the disability shopping list.

In the world of ‘normal’ children – where I lived for a while when it was just us with Big – we had different comparisons. Were they walking yet? Were they sleeping through? could they make that toy work? ‘Oh, is yours not doing that yet?’ (I love the use of the word ‘yet’ – that certainty that it would happen). But here in the land of disabled children there is another unspoken sliding scale – how disabled is yours?

And there it is. I don’t see ‘Disabled’ – it’s always a slight shock when someone uses the word in reference to Small. Many of you would look at Small and his long list (dysmorphic features, unable to move independently, only able to feed if aided, pre-verbal) and think, Ooh, now *there’s* disability. I see Small. I see his wonderful laugh, his smile of pure delight, his voracious appetite, his love of movement, his enjoyment of being pushed in his pram in the wind, his utter delight in seeing his sister, his arms stretching out for a hug. He *loves* hugs. I genuinely could go on. I’m fully aware that his needs are complex and he will require lifelong care (though ‘fully aware’ and ‘totally accepting of’ are two Very Different Terms) but I don’t feel pity for him or me and am always mildly surprised in a ‘Who-me?’ way when someone offers it. I need time, support, wine and chocolates (not necessarily in that order) but not pity.

‘How disabled’ they are shouldn’t matter and shouldn’t be relevant. What matters is that their (and their parents’, and their siblings’) many and varied needs are understood. And met.

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Swan UK is 2 today

It’s true to say that there are some things you didn’t know you needed till you got them. I’d include amongst this the Lakeland catalogue, internet shopping and, for me, online forums.

Pre-Small I had no time for online forums (or Lakeland, or internet shopping, but I digress…). I didn’t see the need. I had enough friends and colleagues in the same mortgage/job/first child spiral to give me all the information and support I needed. But then along came Small. And the path we found ourselves on was not one on which anyone I knew had walked. People were…. sympathetic (I didn’t want sympathy), angry for me and our situation (I had enough of that of my own) or worst still made light of it, saying he’d get better (he wouldn’t, not in the sense you mean anyway). So – support, where to find it? Have you heard of SWAN? Swan…?

At first I felt like I was intruding into this world where people talked openly and freely about things I hadn’t yet experienced, or might not ever experience. So, for a while, I listened and read, followed the odd post. Then, took a deep breath and dived in, hoping no-one would think what I’d written was inappropriate (or, God forbid, badly spelt…:-)).

10 months into our Swan journey I cannot tell you what a lifeline it has become. Nowhere else can I (can we all) be as frank about things that are worrying us; celebrate what to others may seem trivial, but to us is life changing (He. Picked. Up. His. Spoon!!) and talk about poo. Endless talk about poo.

There is a wealth of knowledge that Swan member have that is freely shared that gives us all such confidence to go back to the outside world to say ‘No, that’s not right, bloody do something’.

And sometimes, late at night usually, often after a glass of wine, very very funny conversations are had about subjects very non-swan related. And that is good for all our souls.

Happy Birthday Swan UK. Thank you for being there and thank you to those who are making sure it stays and grows up.

SWAN have made it through to the voting stage of the Direct Debit Big Break competition, they can win up to £2000 but needs lots of votes – please take a minute to vote for us if you can!

https://www.directdebit.co.uk/thebigbreak/100goodcauses/pages/causedetail.aspx?causeid=1230

Can I tell you about our weekend?

We jumped into the car and drove to the beach. We spent the day eating icecream, counting and sorting stones, searching for fossils… and finished up eating fish and chips on the wall watching the sun go down. So far, so normal, why blog about this? It’s surely just another regular weekend?

Well, no.

When I say all, I mean we 3 – me, OH and Big. We could not have done this with Small. He wouldn’t have enjoyed the car journey, we could never have navigated his buggy down the cute but inaccessible streets, he can’t hunt for fossils or throw stones as he isn’t independently mobile and the fish would have been too chewy. He would have cried, he would have extended his little body in disgust. We would have been miserable.

Thank goodness for respite. Social Services – staggeringly – have upped our respite considerably. This is due in no large part I suspect to my crying over them every time we meet…

Whilst we were sat on the beach Small was with his DP provider and her family. They went to the park and fed the ducks. He returned home full of beans having clearly had a brilliant time. I think the time he spends with them is like the time he would spend with his grandparents if we would trust them to have him. He has their full attention (they’re not trying to sort the car insurance or hang out the washing) and they treat him. It works for all of us.

And I don’t feel guilty for having time apart. I revel in it. I walk up stairs, I go down narrow streets. I sit. And when he returns, we’re ready to go again.