Why vote for Swan UK?

‘Lifeline’
‘Empowering’
‘So good to know it’s not just us’

These are my words, and how I feel about SWAN, but I know, having talked to other members, that this is a common feeling. SWAN’s tagline is ‘undiagnosed but not invisible’ and for good reason.
‘What’s wrong with him?’ people will ask me about Small.
Inwardly I sigh. ‘You mean, what’s his diagnosis?’
They nod.
‘He doesn’t have one’. And they regard me, without understanding.
How, in this day and age, does my boy not have a diagnosis I see them thinking?
If this individual is from the medical profession they will go on to ask me if he has had all the tests…. No, we’ve just left him to fester. Of course he’s had them. And, really, what has this got to do with sorting out his cough? (One nurse then said, ‘Nothing, I was just curious’. This really happened. With no label, Small is a curiosity, a fairground sideshow).

Small is a SWAN (Syndrome Without a Name). This is both liberating (he has no developmental pathway, he could do anything!) and frustrating (he has no developmental pathway, he could do nothing!).

And it’s not just Small, there are so many of us.

Having a disabled child, rather like being pregnant, makes you public property. People will ask the most intrusive questions, because they are curious. People will stare at your child and the mountain of kit that may come with them (feeding tubes, oversize buggy, wheelchair, walking frame) to try and make sense of this child who does not ‘fit’. People will look away when their behaviour is deemed ‘inappropriate’. I understand all of this as, in our pre-Small world, when it was just us with Big, I would probably have done the same. You do not know how to act for the best. People are naturally curious creatures who, at the same time, expect others to conform. SWANs are unpredictable creatures and, as their parent, an extra thick layer of skin is required. Sometimes it falls off.

Here’s where SWAN UK comes in. This is a community where everybody gets it. Here is a community of the most amazing parents, trying to do the very best for their children within a system that does not understand them, cannot fit them into a handy tick box (no diagnosis, hmmm) and yet must be seen to treat them fairly. Here is a community that spans the whole of the country that regularly organises local meet ups so we can talk with people in the same situation as ourselves. On a personal level this has just been life-changing. I’ve met some wonderful parents, some of whom have become close friends, all of whom understand when I say ‘Today has been a bad day’. All of whom will applaud when I say ‘Small is finally doing This!’ All of whom will have advice when I say ‘Our therapist has recommended this – has it worked for you?’ The support is priceless.

As an online community we are all there for each other, whatever time of day. Having a disabled child can be very isolating. It’s a lot harder to get out and about, many SWANs have prolonged stays in hospital – someone is always there to say ‘It’ll be ok’. SWAN will send balloons to the children. This says ‘You are not alone – we care’. Tiny things make a huge difference. To know you are not alone gives you confidence – something you need in abundance when your child needs you to advocate for it Every Single Day.

SWAN is a little known charity, but it is growing in stature and visibility every day. Your vote will bring it to the attention of more isolated, scared and exhausted parents who sat where my family sat a year ago and, I promise, it will change their lives.

To vote takes a minute, thank you.

http://www.lotterygoodcauses.org.uk/project/supporting-families-children-undiagnosed-genetic-conditions-swan-uk

Small’s amazing achievement

I’ve been thinking about the lovely small steps amazing achievements linky that others have been talking about (http://www.ethans-escapades.co.uk/p/aligncenter-hrefhttpwww.html) and come to the conclusion that, as is Small’s glacial way, we have one. He has grown up.

As Small has such a plethora of disabilities I – and the rest of Team Small – tend to overwhelmingly baby the poor lad, despite his having turned 3 this month. 3, really?? But, actually, he is no longer a baby his is, without doubt, a little boy. Looking at pictures you can see the change. He has gone from blank faced little chap to a boy with an alertness and an awareness about him who knows when things are funny. Daddy, you’re throwing a shiny ball in the air? That’s hilarious, Big, you’re making chicken noises, I think I may laugh so hard I’ll choke!

It’s only when I look at our day (see Small’s day) that I realise how it has changed. In that newborn way – that went on faaaaar beyond newborn – everything used to be a rush to get done before Small screamed. Let’s get him up, he’s screaming; let’s get him fed, he’s screaming; let’s get out, he’s screaming. Now? Well, Small has learned patience. He will wait. Not forever mind, he’s still only 3 and he still has all his additional needs and inabilities to a) express himself clearly or b) get to the thing he wants, but he will wait and play long enough for us all to be ready at the same time and get to the next activity without so much stress.

There is less stress in our lives.

And I have noticed that it’s the lack of stress and the addition of respite that has rippled so positively through our daily life. For me, well, I occasionally ring people now. And am able to have a conversation. But most of all, I am wearing jewellery again. This is perhaps MY amazing achievement. For 3 years I didn’t have enough room in my head to create space in my life to slip on a bracelet and a pair of earrings. It’s hard to express what this means that I now do, but I suspect some of you will understand. It’s huge. It’s like I’m slowly but surely walking back to me.

My Day (as written by Small)

Somewhere between 5-7am

Ooh, I’m awake. Great! What shall I do….? Where’s ladybird? I know I was sucking the life out of his antennae last night but surely he’s dry by now? Ooh goody he is (giggles). (Time passes). Now what? Ooh, my favourite – thumping my legs up and down on the bed whilst clapping my hands, Mummy loves this. I know that as she talked sooooo much to Granny about how the sound travels down to her room. Well, it was Daddy’s idea not to put carpet down. Thump thump thump thump thump. Clap clap clap clap clap. I’m a bit bored now. Where’s Mummy? Waa….Waaaaaa…..Wa – ooh, here she is! Lovely Mummy… cuddle? we love cuddling, it is my favourite game apart from grabbing her glasses, although Mummy always gets her grumpy face on when I do that – saying the No word…? What? She says it’s too early to get up just yet and goes to open my curtains. I Love Light. I do, it’s…. oooh…. sunny…. where’s Mummy?

7am-9am

Ooh, Mummy’s back. And Big too. It must be time to get up! Cuddle Big, cuddle Big! Mummy gets me dressed, telling me what a stinker I have given her and asking why I couldn’t give it to Daddy? But Mummy, it’s my present to Yooooooouuu. Mummy carries me down to breakfast. Mummy says I’m really getting too big to carry but I love being carried. I just love it. Ooh, here’s Daddy, Mummy says he’s burnt his toast again. I don’t know how Daddy only ever burns his? Daddy tries to pretend he’s a monster that eats necks. Get off Daddy, off off, WHERE’S MY MILK???? Ooh, got it. Mummy tries to race me buttering and jam-ing her toast whilst I drink my milk. I always win. I giver her a second then WHERE’S MY WEETABIX???? OOh, here it is. Mummy loads the spoon and I pick it up then drop it back for her to load up again. It’s a great game. Then – because it’s breakfast time – I get really really excited and flap a lot and everyone shouts WOOOOOAH! – as their drinks go everywhere. It’s The Best game ever. I don’t know why they don’t drink them quicker?

9-12pm
Once we’ve dropped Big at school (where all her friends try to grab my hands – why???) we come home. Mummy apologises to me for jabbing at her screen thing, then jabs at her screen thing. This is great as I get to wriggle on the floor next to her playing with my remote control. It sings to me and makes great noises and best of all doesn’t make me do anything. Oh noooooo, she’s put down her jabby thing this means… I don’t want to do therapy, I hate therapy it really…. oooh, mummy’s singing Row, row, row whilst rocking me on this rocky platform thing. This is fun! She says it’s for my core stability but I just say Sing More!! When ever I say ‘more’ mummy nearly cries. Sometimes she misunderstands my ‘more’s for ‘mummy’ but that’s ok… she’s trying….

Ooh. Lunch. Yum. MORE!!

2-5pm
This part of the day can be a bit dull. If I’ve had a nap I get up in what Mummy calls a foulio mood, which means I won’t stop shouting till either someone’s given me a biscuit or we’ve gone for a walk. Or both. If we don’t have to pick up Big Mummy takes me shopping which is great as I *love* ignoring all the people who try to say hello to me – I don’t know them…! – and the shops are FULL of shiny things. I love shiny things. Also, if we’re out Mummy isn’t trying to make me do anything difficult. If we do have to go and get Big (I am always happy to see her though, she give Great Big Cuddles, no-one cuddles like Big. I love her sooooo much) we bring her home where she ignores me completely watching telly till tea time.

Ooh. Tea. Yum. MORE!!

5-7pm
Mummy’s mood tends to pick up no end at this time of the day. She will cuddle me, spin me round, sing to me and generally make a fuss of me and Big. She says this is because she can See Bedtime. Mummy is very clever for I cannot see bedtime at all. I have a bath, or Big will have a bath – we can’t have them together as I have goen Right Off doing sitting and I have got very long (why am I long – everyone else is tall?!) and I love love to do kicking. Big doesn’t like it when I kick as I splash EVERYWHERE!! Mummy thinks it’s funny, but she doesn’t stand very close. I have a story which Mummy tries to read whilst I pull and eat the book (I do laugh when she and Big do the animal noises though, they are brilliant) and then she brushes my teeth. She sings to me, or uses funny voices when she does my teeth. She thinks I don’t know what she’s up to but I do. She is Distracting me. That is OK. Then she puts on the music and stars and I can go back to sucking Ladybird’s antennae.

I love my life.

Small xx

This wouldn’t have been written had I not read these two very funny posts first:

http://complicatedgorgeousness.blogspot.co.uk/2013/07/my-big-brothers-birthday-bash.html
http://areyoukiddingney.wordpress.com/2013/06/23/living-the-dream/