TedX: Down's Syndrome - Beyond the Barrier of Fear

Ted, and the independently run TedX events, are a worldwide series of talks based on 'ideas worth spreading'. You may be a huge fan, or equally may never have heard of them. 

Watch or read the transcript of Hayley's talk below and
explore the list of other recommended talks. Photography @verityWestcott

Just over a year ago I was asked if I would like to do a TedX Talk at the local TedX Truro event. I jumped at the chance with a mix of pride and excitement at first. This was a massive honour, a big challenge, but I hoped I was up to it. I've been a huge fan of this international network of talks for years, often turning to them to lighten mood, become inspired, fuel curiosity or learn more while going about my chores, instead of having the radio bumbling away. I've learnt so much from thewide range of speakers.

Ted says we each have a story inside us and that the world becomes a smaller, kinder place if we listen to one another's tales. Apparently 13-18 minutes is the perfect time slot to inspire  or educate someone who is not an expert in your field.

TedX Truro 2017

Powerful Words: How to Be a Captivating Public Speaker

A Captivating Public Speaker

A good speaker, be it at a conference, after dinner at an awards ceremony, or via a traditional platform like TedX, holds a lot of power in their hands. 

The right words, delivered well, have the ability to move us to tears, shake us with laughter or make us stop in our tracks and think deeply about an area of life that we have never before contemplated. Words quite literally shape our thinking and can stay with us long after the talk is over. 

Empathetic, relatable and passionate after dinner speakers* will make you feel as if you are walking their path alongside them. They will make you see life from a different perspective. And when a warm and honest orator takes to the stage, you will not hear a single pin drop. There will be no need to hush the audience, for they will be utterly captivated.

Whilst we can all hone our speaking skills and improve how we deliver our message with practice, I do believe that the desire to want to get up and overshare our personal stories in front of strangers is probably due to some innate personality trait. But the ability to do that in a way that audiences want to keep hearing is truly an honour and a blessing. 

Sally Phillips is a brilliant after dinner speaker

Presenter with Down's Syndrome: George Webster Delights CBeebies Viewers

George Webster show us why we all need to see ourselves represented in the media.

The following article first appeared in iNews

“It’s my friend George! He’s the same as meeee!” my daughter Natty squealed, as we tuned in specially to watch CBeebie’s newest presenter teach us how to blend a smoothie. 

Natty’s college-aged big sister Mia perched between us on the edge of the sofa, each of us grinning with the sort of pride you only feel when a family member appears on your screen.

 

Like any professional kids’ TV show presenter, 20-year-old George has all the right characteristics to get BBC pre-schoolers and those with special needs glued to their screens; effervescence, bubbly charm, a quick wit and a trendy vibe that his viewers aspire to emulate.

Here I Am: Off the Rails Film Premiere

Three years ago my life was derailed by divorce. 

Our little carriage came to a soul-shaking halt. And the shrapnel of broken hearts and bits of family life lay all around. 

And just as my girls and I were gingerly glueing the working parts back together and inching forward, a global pandemic took a sideswipe. It brought fear and isolation in its wake, and stole the hugs of friends' that had quite literally held us together.

Here I Am: Olly Bermejo at the Off The Rails premiere @Getty

Sally's Invitation

So when my dear friend and everyone's favourite actress Sally Phillips asked me to attend the red carpet film premiere of her latest film Off The Rails at the Odeon Luxe in Leicester Square, last week, nothing was holding me back. 

Flemish Painting Features Angel with Down's Syndrome

The Adoration of the Christ Child

This oil on wood painting shows a classic nativity scene, and the little angels kneeling at the front on the left clearly has Down's syndrome. Some think the shepherd at the back on the left also has an additional chromosome.

At the time when the work was created it was common for the faces of those who had commissioned the art to feature within it. Perhaps we are looking at the face of the much-loved daughter of a wealthy and proud 16th Century Flemish family here. 

The 1515 Flemish painting, by an unknown artist, depicts an angel (next to Mary) and possibly the shepherd in the centre of the background, with Down's syndrome.

It's wonderful, and it shows that Trisomy 21 has been around for a very long time. The Flemish artist is unknown, but was a follower of Jan Joest of Kalker. The painting resides at the New York Metropolitan Museum of Art. 

Siblings, Screening and the Sillier Side of Life: Sally Phillips and Hayley Goleniowska Chat About Down's Syndrome to Challenging Behaviours Podcast

Check us out! At the glowing age of *ahem* the latter part of our 40s, my friend Sally Phillips and I are dipping our toes into the podcast pond! First Sally learnt about 'gaming' wearing 'on fleak' fingerless gloves and a beanie hat, and then we were guests on the cutting edge Challenging Behaviours Podcast! 

Sally Phillips and Hayley Goleniowska chat about siblings, screening
and the sillier side of life with Down's syndrome to the CB Podcast team

I think we are officially 'down with the squad' or whatever the current vernacular is.

In all seriousness though, Challenging Behaviours Podcast is a cutting edge talk show taking the discussion around learning disability and disability into new territory. The programme is run by pioneers Jack, Adam and Tom who bring an ecclectic wealth of knowledge and experience to the mic.

Honorary Doctorate for Sally Phillips for A World Without Down's

A doctorate is usually gained after years of university-based slog, immersing yourself in research, living amongst piles of books and coming up with ground-breaking ideas that might impact on a wider audience.

This week, one of the nation’s funniest comedy actors, Sally Phillips who is currently co-presenting BBC Radio 4’s Museum of Curiosity, had an honorary doctorate bestowed upon her by the School of Social Sciences at the University of East London (UEL).

Sally Phillips receives honorary doctorate for A World Without Down's

The Blues, Views and Downs Side Up News

I realise that there's been a little radio silence of late. I won't apologise because I'm certain that you aren't sitting waiting for the latest instalments from team Downs Side Up, but here are some of the events that have filled our time recently.

Blogosphere Magazine

Life hurtles on, commissioned articles for others (apologies due for those that are late) are increasing, a teen and tween need more attention (who knew!), EHCP plans take research and time (and bucket loads of chocolate), I've taken on a school Trustee post which is quite a steep learning curve too. 

There have been trips, travel and a house full of friends. Natty spent SATs week at home having dancing, swimming and music lessons and we've spent a lot of time desensitising her ready for a routine blood test, by way of play therapy.  

Add to all of this a world that feels like a confusing mess at the moment and I'm sure I'm not the only one feeling my energies sapped. Our thoughts are with all those affected by recent events in out cities, and we cling to the hope that we can all pull together moving forward.

5 Reasons to Blog About Special Needs (and 5 Pitfalls)

All those time-hopping notifications on social media reliably inform me that my blog Downs Side Up is 5 years old. 

That just can't be right.

Can it?

*Cues fanfares and balloons and copious amounts of cake and makes a note to slow down sometime soon.*

Blogaversary

So why are there so many special needs blogs these days, and what are the advantages and pitfalls of starting one? 

For 5 years I have been jotting my private musings into my computer and my words have flown around the world, creating tiny changes here and there. Little ripples of hope I like to think. Only this week I received a message from a woman who's just borrowed a year old copy of Good Housekeeping from her Cape Town library and found our 'inspiring' (her words) story inside. 

This concept never ceases to amaze and humble me.

SEN blogs in the media

Covergirl

This Christmas, a sparkly article in Womans Weekly was published, featuring Natty on the front cover and a two-page spread inside. Blogging is evolving, it's becoming more and more mainstream and merging with the media.

Evolving Blogs

Over the years I've written about the people we've met and the places we've been through Downs Side Up and looking back I feel the need to pinch myself at times. There've been celebs-a-plenty, more magazine articles than I can remember, commissions to write chapters and articles, collect awards, interviews, tea with the Queen, fancy dress with the Lord Mayor of London, a slot in a documentary, lots of modelling and a sea-change towards inclusive advertising. 

But this is not why we do it. It is the thousands of parents and bloggers and medical professionals that we have hooked up with along the way that really count. The rest is just icing on the cake. 

'Why are there so many special needs blogs these days?'

I recently attended Mumsnet #Blogfest16 to host a Special Needs Blogging round table, and one of the first questions I was posed by the organisers was why we thought there were so many special needs blogs, enough to warrant their own round table and even their own award ceremony (The BAPS - Bloody Awesome Parents - are to celebrate these writers in May '17):

Mumsnet Blogfest16 Special Needs round table

When I started Downs Side Up five years ago, it was one of the first Down's syndrome blogs in the world. It filled a void I guess. And 5 years ago when I first attended a blogging conference I pretty much knew all the other SEN bloggers who attended. There was Steph Curtis - Stephs Two Girls and Tania Tirraoro - Special Needs Jungle and Steph Nimmo - Was This in the Plan??? and Renata Blower - Just Bring the Chocolate, each writing in their own niches. 

Today, there is a blog on every condition and disability to suit everyone. Each with a personality as varied as its author's voice and each with its own unique readership. There are family forums and patient groups hosted by every charity and many companies too, lending support to all who are looking for it. This can only be a good thing, our writing has formed a kind of safety net.

But why are there so very many of us writing about this particular topic? We* set about finding out why, in a safe and supportive space. 

5 Reasons to Blog about Special Needs

It's true that bloggers write incredibly powerfully about special needs and mental health, often drawing on personal experiences in a way that mainstream media struggle to do. They are completely motivated by a desire to create change for their families and others, in a way that paid writing cannot match.

• It's cathartic - the most common reason to start a blog is to be able to express yourself. As one writer put it, blogging is a cheap form of therapy or counselling for many. So often we find ourselves writing into the evening, tears plopping onto our keyboards, and working through the trickier emotions we so often face and somehow we 'blog through it', as if seeing the words on the page unscrambles what is in our heads and hearts.

• Sharing information - Some parents share resources and tips on their blogs, others use the online space as a kind of diary to provide a running commentary with friends and family when their child is ill. This reduces the need to keep repeating themselves and the blog acts as a kind of one stop shop of information. It can also be a way of explaining difficult situations to loved ones when a face to face conversation might be impossible.

• Support and community - When I began my blog I thought I would be supporting new families with a baby with Down's syndrome. What I very quickly realised was that my blog would act as a portal into a whole online community who would help me through the toughest of days, the worrying moments and whose families would lead the way for us through example. Blogging brings us access to a fantastic network of support and friendship and often supplies the answers we seek that we can access in small chunks whenever we are ready. It reinforces that we are not alone.

• Campaign work - Often the blogging community join forces to create lasting change. Our voices are stronger and louder together, and we can see them put to good use working on projects such as calling for more accessible toilets, supermarket trolleys with support for disabled children or adapted clothing and larger nappies to be more readily available. These, along with campaigns to educate the public and medical professionals about various conditions are having a real impact on the way families like ours experience life.

• Fundraising - Another way in which SEND bloggers often join forces and work together for good is fundraising for their charities, as well as raising the profile of the work they do. With social media and hashtags often going viral on awareness days, it can be a straightforward way to collect vital funds. 

5 Things to Watch Out for When Blogging

Blogging is not always plain sailing, in fact far from it. I have experienced many times where I have thought about giving up, where it has taken an unexpected turn I didn't like. Here are the pitfalls that you may encounter along the way. 

• Comparison with others - It's easy to end up either comparing your writing, your lifestyle, yourself or your child's condition to others. You, your family and your blog are unique, so accept and celebrate that. 

• Pity and/or inspiration porn - This can be a very fine line to tread for many and you have to weigh up being honest and truthful with creating a welcoming space on your blog for others to visit. I think it's important that readers don't feel sorry for my child, or think her inspirational for doing ordinary everyday things, that would be when it all becomes patronising. I would also stop short of using her voice as my own, putting words into her mouth. 

• Privacy vs advocacy - There is increasing criticism of parents writing blogs about their children with disabilities without their informed consent. Our blogs, after all, will be a digital tattoo for the rest of their lives and this is worth bearing in mind. My blog has certainly changed as the children have got older but it has always been a place to showcase the voice of those with Down's syndrome too. I think having a child with a learning disability means that we often become their advocates and without our blogs they would still be hidden and forgotten. That said I am cautious about what I share and many bloggers chose to keep their writing anonymous. 

• Trolling - The internet, social media seem to encourage a kind of sport where it is acceptable to write horrendous things to vulnerable people that you would never say to them in real life. Like most bloggers we've had our fair share of trolls, some which needed police attention, and also criticism from within our community. This can sting and it's taken me years to grow a thick enough skin to let it wash over me. 

• Losing your way - Comparison to others, following the latest meme, competing for votes for awards, over-monetising your blog and filling it with reviews or simply accepting to help every single charity that ask you to get on board with a campaign, can all contribute to writers losing sight of why they started blogging in the first place. As you should always pause before hitting publish, always pause before you write. Your blog is your own space and it can quickly become hijacked. Sometimes a blog break helps bring back the focus and reminds you of the original motivations and why your readers started following you in the first place. It helps you find peace with your blog. 

So while I can no longer keep up with the volume of SEND blogs, the dinosaur that I am, it is really heartening and important to know that they are there, and that they are making a difference. 

So, keep writing, blog for yourself, your families, your sanity and make your voices heard. 


* List of Mumsnet Blogfest16 round table attendees:
@tygerbearandme
@ggblog44
@cecillaw
@hlmeadows
@happylittlehugh
@orangethisway
@gingerbreadsun1
@asalexgrowsup
@downssideup

Downs Side Up had been nominated for a 

UK Blog Award for Healthcare. 

Please vote for us here: 

The Precious Power of A Song: Depeche Mode

This weekend my little brother (aka Uncle Carl) secured two tickets for us to go and see the inimitable 80s band Depeche Mode during their Global Spirit Tour. 

This was a band we shared a love of as youngsters, a band we listened to throughout the teenage angst, a band we grew up to.

Depeche Mode music takes me back to when Natty was born

We Interview the Woman Behind the Camera: A World Without Down's?

 This very evening the 5th October at 9pm on BBC Two a ground-breaking new documentary co-written and presented by actor Sally Phillips airs. It's called A World Without Down's? and talented film-maker Clare Richards was the woman behind much of the filming and editing. Downs Side Up asked her a few questions.

Clare Richards was the woman behind the camera filming A World Without Downs?

The powerful piece looks at Down's syndrome screening programmes and asks some important ethical questions about our views on disability as a society. I was enormously proud to have been filmed whilst training medical professionals for the programme along with our daughter Natty. 

Key scientists and ethicists, as well as champions with Down's syndrome and their families, also feature in a work that will start important conversations everywhere. Never before has a programme asked the opinions of those with Down's syndrome on such an important topic either.

The country is in a media frenzy with Sally Phillips at the helm. Media interviews are like beacons of light flashing across the country as our community rallies. Here's my pennyworth on BBC Breakfast yesterday. 

But with all the focus on the protagonists in the film, rarely does anyone ask the film creator about their role in bringing such an important topic to our screens.

So I threw a few questions at Clare, and asked her what she's working on next and here's what she told us.

***********

How were you selected to work on A World Without Down’s? What drew you to the subject?

I’m always interested in subjects where minority or alternative voices get a platform to express themselves more fully, so when I heard about this project I was naturally drawn to it.

You work alone at times. Tell us about the different roles you perform in creating a film such as this.

There’s always a big team in the background keeping a production moving forward in all directions, but with this project there was an awful lot to read and lots and lots of people to meet before we did anything – it’s complex, in fact I was continuingly researching the whole way through the process. 

I was also self-shooting the documentary, keeping in touch with the many contributors, as well as working to a schedule that had to co-ordinate with Sally’s very busy timetable and making sure that a mutli-layered subject was fairly discussed in a way that was going to be accessible to a broad audience.

 

Clare tells us about the making of BBC Two's A World Without Down's?

Tell us about an average day for a documentary maker.

There really is no average day – I could be anywhere, talking to anyone about anything. But it will usually involve lots of research to ensure you fully understand your subject matter, I needed to ensure that I could communicate the subject to the general public. So lots of reading, phone calls, meetings with experts and people involved in the subject matter and also to those who hold the subject close to their hearts.

The film features some very personal moments and a range of raw emotions from various people. How do you feel witnessing these? How do you ensure authentic emotions are expressed. Do you ever put the camera down and give your subjects a hug?

It’s always a real privilege to be a witness to sensitive situations where emotion is raw. I hope that I develop good relationships with people before we film anything emotional so that people can feel comfortable, or comfortable enough to be genuine when we do film. It’s often easy to spot when emotion isn’t real and if it is disingenuous it won’t tend to be used in the final programme. From years of experience I will sense when I’ve filmed enough so that I can give people space that they need or give them a hug.

Was it a straightforward process? How many hours of film, countries visited, nights away from home, extra takes etc 

It wasn’t straightforward at all! We filmed about 18 days with Sally in America, Iceland and the UK, which isn’t a lot of time, but the work that went into each day’s filming was quite considerable. Carl, the producer was constantly juggling information, schedules and relationships with a huge variety of people with lots of different opinions.

How did you begin to decide what made it into the final edit.

You look at everything and then start whittling it down, being mindful of the fact that you have to weave a narrative that takes people on a journey that is surprising, informative and entertaining, if possible!

What was your personal experience of Down’s syndrome when you were growing up? 

I didn’t have a huge amount, I didn’t go to school with anyone with Down’s and I didn’t know anyone outside school with Down’s either. However, my Dad worked for a charity that raises money for people with learning disabilities for 10 years. He organised the funding of a mini-bus for the local Down’s group in Somerset called Ups and Downs Southwest, which is run by Wendy O Carroll and he was always really struck by her son Oliver, who is a very successful photographer. The first film I made was called Disabled and Looking for Love, about dating and love for disabled people so I guess I’ve always been empathetic.

(Read the Downs Side up interview Focus on Oliver Hellowell here.) 

What did you learn from making the film, both professionally and about DS?

I learnt a great deal more about Down’s syndrome than I knew before, it really does feel like an outdated view of what Down’s syndrome prevails. I learnt a great deal more about bioethics and the science of genetics and that was fascinating too.

Are there any moments in the film that really stand out for you and what are you most proud of?

I’m proud of the sequence with Sally and Ollie on the Southbank because it feels very intimate. It was also important for the film that the viewers are able to witness Sally being a mother and I feel through this scene you truly see this and it’s really beautiful.

I’m proud of the fact that a lady that has terminated pregnancy felt able to contribute to the programme. It was an incredibly brave thing to do and I hope it helps other women like her feel able to talk about to their experiences so they’re less stigmatised.

I’m proud of the fact that I’ve been able to tackle a difficult, complex and emotional subject in a way that hopefully draws people in and makes them think and discuss.

Tell us about your other/future projects. 

I’ve just started on a project for BBC 2’s This World international current affairs documentary strand which will be following a British doctor with albinism as he investigates the persecution that Albinos experience in East Africa.

See more of Clare's work on her website. 

BBC Three Bust Myths with New Films: Down's Syndrome

BBC Three have been working on a fantastic series of films which bust myths. The first of these that caught my attention was a hilarious yet informative short, featuring my beautiful friend Victoria Wright. 


Watch What Not to Say to a Person with a Facial Disfigurement here.  

Apparently Bio Oil won't help, in case you were wondering...

BBC Three create new myth-busting film about Down's syndrome

BBC Inside Out Documentary : Parent Power

We've been working with the BBC Southwest Inside Out team for about three months now, to produce a short documentary about antenatal screening and support for new families, as well as highlighting the need to liaise with medical professionals to improve their terminology at point of diagnosis.

Available to watch here on BBC Inside Out

BBC Radio 4, a Broom Cupboard and Fear Factor 5

So, just before Christmas, right when I had about 10 different lists of things to do on scraps of paper scattered around the house/in the car/pockets of various garments, I was asked to record a piece as part of a BBC Radio 4 You and Yours programme by Nina Warhurst on the new antenatal NIPT tests.

Despite the yuletide panic, it's a topic I have plenty to say on. I simply couldn't say no.

Radio 4 interview from the broom cupboard at BBC Radio Cornwall

I trundled off to my friendly local BBC Cornwall offices which I hold dear to my heart as that is where my very first radio interview (about a cake with chromosomes on it as it happens) took place. 

Editor Daphne Skinnard had kindly booked out the broom cupboard recording studio for me, and I made myself comfy in the lone chair there. Once the door was shut behind me I waited, adrenaline-fuelled and ready in the silence, waiting for the London studios to make contact.

I had my mind map of notes in front of me, but as a topic I've chatted about many times, I wasn't too nervous. I was nervous that I wasn't nervous enough. It wasn't live after all and I had spoken to Nina, the presenter, a couple of times. She'd put me at ease. But shouldn't I have been more nervous?

The voice came through... a little deep for Nina I thought. No, it was a sound engineer checking the levels. After a few checks, we began. Nina asked questions, most of which I had anticipated and we talked freely for about half an hour. That was that. For the time being. 

On my way out to pop into town for some last minute cranberry sauce, a radio station apprentice collared me to record a sound 'window' for their advent calendar. I chatted about what Christmas meant to us. How Natty was born a little early at that time of year and had spent 3 difficult weeks in neonatal care, before coming home  to us on Christmas Eve. The perfect present, our little nativity baby, our perfect Natalia.

I then forgot all about the interview until after New Year. As the day it was to be aired drew closer, I realised that perhaps recorded interviews aren't as worry-free as I thought at the time. I began to muse about what I had said. What I hadn't said. What I should have said. I began to think how any part of it could be edited, taken out of context even.

Listening in  to You and Yours nervously

The morning of the programme dawned and left me feeling sick and shaking with nerves. Tears rose in my eyes and that of my Mum as we listened in silence to the start of the programme. 

Despite the subject matter being difficult and emotional and despite wanting to continue and say so much more after the programme had ended, the essence of what I wanted to portray was maintained. Nina had done us proud with her edit. 

Every person with Down's syndrome is a unique individual, a human story, part of a family, not simply a set of characteristics or possible medical conditions. This is the balance we need to bring to antenatal support. Unbiased support. 

You can hear the BBC Radio 4 interview here at 25 minutes

UK's Biggest Selling Glossy Feature Model Natty: Why it Matters

The media communicate to the masses what is acceptable, what is 'the norm'. The fact that the UK's most widely circulated glossy magazine has featured a child with a learning disability as an angel in their Christmas edition is very important news indeed

Natty features in Good Housekeeping Magazine, photos by @Katie Wilson 

All children love a cool outfit and who doesn't love sparkles and glitter, even if they did happen in August for Natty and I. 

It was an amazing day in London, we were spoit rotten, we met incredible women, but most of all, we were helping to bring Learning Disability into everyone's homes, into all areas of life. No longer should anyone be hidden away from view.

A Year of Advocacy, Collaboration and Inclusion

What have we achieved? What have we learned?

The highs, the lows, the collaborations and challenges that made, or nearly broke us. 

Where will the next year take us? 
Who knows. But here are just a few of the moments from 2014 that have shaped our campaigning and advocacy.

The highs and lows of 2014 for Downs Side Up

We Need to See Disability in Advertising

'It's meeee!' she squealed excitedly as we drove round the roundabout.

We manoeuvred round one more time so that she could get a closer look at the huge banner outside our local supermarket urging us to get organised for the new school term. This time we all squealed. 'It's yoooou!'

A third lap. Just for luck. Just to be sure our eyes could be believed, smiles stretched across every face in the car.

I fell silent as I fought back a tear or two, my heart swollen with pride as I allowed the true significance of what I had just seen to sink in. This was so much more than a Mum seeing her child's face on banners outside every Sainsbury's in the land. For Natty has Down's syndrome and this is the first time that a child with any kind of disability, physical or intellectual has featured in a major Back to School advertising campaign. For me the posters might as well have shouted:

• All children have a right to quality education and the skills to enable them to lead full independent lives. 

• All children have their own unique personalities and our classrooms benefit from that eclectic mix. 

• All children, regardless of their abilities or disabilities, love a shiny new school uniform!

The Secret Ingredient is Hope

A friend gave Natty this figurine
when she was born

I had never really thought too long and hard about the reasons behind the names we chose to give our girls, until Downs Side Up found itself in the public eye.

We had a rough shortlist of names we liked during both pregnancies, and then waited to meet our babies before deciding which names suited them.  As a parent you concentrate on the child, their personality, their needs, breastfeeding, medical issues, (sleep!) ...and then suddenly, one day, hey presto, they just 'are' the name you gave them.

Of course when Natalia was born, the medical complications were considerable, and we found ourself in a deep dark place of shock as her Down's Syndrome had not been diagnosed antenatally.  She was Christened at 3 days old (or so, this time is a numb blur) and we quickly picked a name before that occasion.  Her due date was Christmas Eve and, despite being born slightly early, we chose a name that comes from the root 'natale' meaning 'birth' and 'Christmas'. Natalia it was then.  The first ingredient.

To be honest, we feared she would die at that time.  So the middle name Hope was added to the mix.

Some weeks later, when our little, frail new bundle was allowed home, a local GP requested to be her doctor, as his Grandson also boasts an extra chromosome.  I walked into his surgery for the first time that cold January morning with the tiny baby I still could not look at without feeling overwhelmed and afraid.  He simply beamed at us and confidently said, "right, now let me hold this beautiful baby I've heard all about." As I passed her into his arms, he looked at her kindly, smiled and softly said, "Hello Natty."

The nickname was coined.  It found her.  It suited her, and let's face it, it's a lot easier to get her gums around than 'Natalia' (what were we thinking?).  It's also fairly unique, save for a great Reggae artist of the same name.  I like the Caribbean overtones, it's catchiness.   It's a happy, jolly onomatopoeic kind of word that captures her essence.  Short, but very sweet, and always hand in hand with Hope.

Of course we knew all this history, our own private, fond, family nickname genisis, born of affection.  However, an online newspaper article reader, without giving her cutting comment a second thought, piped up "Pretty little model, but why did her parents give her such an ugly name.  It sounds like an insect!" Most tellingly, and ironically, the critic kept herself (just a hunch) anonymous!  

But always there was Hope.  Was it secondary, a middle name given as an after thought?  No.  It was at the very core, the vital ingredient.  'Natty' is the fun, first impression, the outer packaging. 'Hope' is what she is made of inside, the delectable soft centre.  What lasts and endures, and what radiates out to those around her.  

And once you choose hope, anything is possible. 

Media Parachute Deployed!

The leap into the world of media was text book.  

Alison Smith-Squire's training prepared us perfectly.  Her article was beautifully light and positive.  She formed a shield around our family.

Natty's pictures spoke forth from the pages of the Sun, the most widely-read paper in Britain. (5 million or so I hear). 

"Down's syndrome is not to be feared.  Down's Syndrome is beautiful."

We didn't get snagged on any branches on the way down. 

We weren't swallowed in an abyss at all, we didn't even reach the water.

A parachute deployed itself, and we found ourselves rising on warm winds of love, humbled by the words of encouragement and support from our community, and our wider family within Facebook and Twitter.  

The parachute was clearly instantly recognisable for many.  The nation's media watched it beautifully glide.  They decided to keep it aloft.

Suddenly other national papers, radio stations and magazines are stepping forward, willing to spread our message.

TV appearances are planned.  I have been asked to write for a Paediatric Nursing journal and get involved with midwifery training.  Tweets are flying, in no small part due to the beautiful organic, ethical clothing company Frugi that Natty will be modelling for.  

I think we have stuck a cord people...

We will change attitudes at every level for all those with Down's Syndrome.