‘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?’
‘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.