UCD 2021 Helen’s story

SWAN UK is 10 this year.


All grown up.

We came across SWAN UK in – it turns out – its infancy, it’s second year.

Alex was somewhere between one and two years old. We were lost. Bereft.

Honestly … grieving.

Within weeks of his birth it had become abundantly clear that our child had disabilities – a shopping list I liked to call it – including (but not limited to):

Global Developmental Delay

Impaired vision

Hypotonia (floppy limbs)

Dysmorphia (unusual facial features)

Real difficulty latching on (not helped, we discovered, by an awkward tongue tie)

And just, generally … not developing in quite the way you’d expect.

It took what felt like forever to get anyone to agree with us. We knew – because we’d had our daughter – that this just felt different. Alex was too floppy … couldn’t hold his head (far beyond the time when he should have been able to) … and just wasn’t catching our eyes.

My health visitor told me not to worry but that it was probably worth seeing the GP.

The first GP sent me away with pamphlets about Aspergers and Autism and – with hindsight – I should have complained, because who can diagnose that at 10 weeks?

Helen 2

And who lets a tearful mother go like that?

The second GP popped Alex on the examination bed, picked his arm up … and dropped it down like the lead balloon it was.

Neurological he said.

It was a long wait to see our paediatrician.

At first he thought Alex was just visually impaired, but soon changed his mind after a huge round of MRIs, lumbar punctures and blood tests (none of which I ever want to go through again with a small baby who, though he maybe couldn’t do much else, could definitely scream to tell me he was in pain – what are you letting them do?) to …

‘I don’t know’.

How can you not know?

It turns out 6,000 sets of parents every year get the same answer.

‘We don’t know’.

Without an answer as to why our gorgeous boy wasn’t developing the way you’d expect …

… we didn’t know what was coming next

… we didn’t know where to go for help

… we had no answers for ourselves, our daughter or our well-meaning friends and family

And then we found SWAN UK.

We’d gone – in desperation – to Great Ormond Street, for a second opinion. As it turned out, they didn’t know either, but they had at least heard of a group we could talk to, learn from, join … in a meaningful way.

Hello fellow SWAN UK parents (*waves*). An amazing group of incredible parents up and down the country (and a few internationals too).

Nelen 3

I spent a long time on the SAWAN UK Facebook forum over the next few years. Everyone was so free with their knowledge, happy to help, up at all hours, willing to listen.

That group helped rebuild me … and so my family. It enabled us to have an identity as we got to grips with having a child with disabilities. It gave me back my confidence to be a parent.

My amazing cohort – who are now friends – helped with therapy ideas, recommended equipment, days out, holidays.

No judgement when one of us admitted to having a hard day. We all got it.

Still get it.

Seeing the need for some human connection, the amazing SWAN UK admins arranged meet ups – at days out at adventure parks, afternoons at soft play and one amazing weekend in Birmingham where, for once, it was just the parents (well, we parents arranged that one). All a little nervous at meeting each other, all bonding so quickly.

We have a diagnosis for Alex now – Snijders Blok-Campeau Syndrome. In essence, it’s a genetic blip. It’s discoveries like this that make me appreciate how incredible it is that the rest of us are, well, neuro-typical. Typically developing.

And that that really is a sliding scale.

It’s a pretty rare syndrome still, but we have our own online forum, that I like to dip into from time to time. Again, the parents are so free with knowledge and resources.

(I’ll be honest, there were moments when I wasn’t really sure I even wanted a diagnosis for Alex. I quite liked the not knowing, not boxing him in, giving him a label. I loved my SWAN UK tribe, didn’t feel the need for a new family).

Wonderfully, you never have to leave SWAN UK, even with a diagnosis, which I’m still grateful for, because I go back pretty frequently for help and advice. We’re further on our road with Alex now (he’s 11 this year) and most times we feel more equipped to deal with the next step, but there are always other parents further ahead than us to help light the path a little.

This support network is so important –  the team who run it are so amazing, helping parents navigate an impossibly tricky time … a time with no answers, sometimes not for years, sometimes not ever.

We all need to connect with people who have lived our experiences, and in SWAN UK we found everyone we needed.

We were asked what we would be celebrating about our child this year. It’s really the same as every year.

That Alex is Alex.

This boy who loves being outside, stims excitedly every time he sees us, shouts when the telly isn’t on, gives possibly the best hugs ever …

That he’s everything he needs to be, and I watch in slight awe every day as he develops, changes, becomes who he will be. 

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