How Do Passionate Campaigners Change the World?

The beauty of being an intermittent Radio 4 Woman's Hour listener means that you often find the answers to pertinent situations in your life precisely when you aren't looking for them.

How do passionate campaigners change the world?

When pondering the ethical conundrum of new antenatal screening programmes whilst peeling potatoes in the kitchen yesterday, I heard National Poet of Wales, Gillian Clark talk about her poem Letter From a Far Country

She had written it in protest but instead it was lauded as a celebration upon launch. She explained the sudden realisation back then that being positive is what creates real change. 

"Now, if I want to save the planet, I praise the planet," she advised.

The poem, she says, "is a letter to you, reader, from my far country. Each of us lives in a far country. Every time we try to communicate our humanity to another, person to person, writer to reader, every time we make a work of art, as the poem says in its opening lines, it is like putting a letter in a bottle and throwing it into the sea. It’s an act of faith that maybe some day someone on the other side of the ocean will find it but it might take a generation to arrive."

That's it, the answer, right there  

With our blogs, our words, our narrative, the slices of life we share, we are all sending out little messages in bottles for others to read. To read, connect with, and gain an understanding, not only of our lives' differences, but also of the humanity that unites us. 

It's change that happens slowly, but from within people hearts and souls. You can't force that kind of deep down understanding, you have to take an act of faith, believe in your message and stay on track.

And it brought me right back to the original strapline of my blog, that has often sounded naive to my ears 4 and a half years down the line. I'd written it late one night, foggy-eyed from the technical challenges of setting up the site, and from tears shed from exploring the emotions behind starting it.

"Gently changing perceptions from within hearts," 

And yet somehow, hearing those words from Gillian, it has never been a more relevant motto for me. 

That is not to gloss over the injustices and inequalities for those with a disability and their families within our health, work and education systems. It does not hide the lack of support available. It doesn't ignore the unspeakable shame of deaths by indifference of patients who have a learning disability or those due to diagnostic overshadowing. Nor does it turn a deaf ear to the negative and loaded language often used by medical practitioners and midwives who simply don't understand the realities of Down's syndrome today. 

It is that we want these changes to occur because they are second nature, that people really care, that they see everyone as equal without having to be reminded. That we all share common humanities.

Different types of campaigner

And as unique as we all are, as different as our backgrounds and cultures and as varied as the personalities that drive us, the mirad of Down's syndrome champions are joined together in one aim. Like countless strings on a bow, each working away to produce seamless music, vibrating differently, yet joined solidly at each end to remove the fear society has of Down's syndrome.  Such is our community.

There are those who put their heads above the parapet, who dare to expose their lives, their thoughts and emotions to create change. Those who change hearts and minds on a daily basis with each person they meet within their communities. There are those who work tirelessly to support others through groups, therapy, outings, care. Others pour their energies into creative writing, art, dance, music or film. Some adopt a firmer approach. They hold views as diverse as the general population.

But the common thread they ask for is updated, accurate and unbiased support at point of diagnosis for prospective parents and fully informed consent for proposed new Non Invasive Prenatal Tests as well as a standard cooling off period in which to have quality counselling and make a decision. They ask for diversity, inclusion and for the ignorant to learnt not to fear.

So what qualities does an effective campaigner possess? 

  • They reach out and connect with others with interesting, timely stories that are relevant to us all. 
  • They listen to what's going on around them and learn from others by having conversations from the heart.
  • They ooze passion, are engaging yet humble and how they portray their message is almost more important than what they say.
  • They follow their goal, yet are not afraid to fail or face the critics. 
  • They collaborate with others to amplify their voice.

Enter Miranda actress Sally Phillips, mother of Olly, 12, who has Down's syndrome. She has spearheaded a BBC1 documentary, due out next month which looks at what we stand to lose in a world without Down's syndrome. 

Sally Phillips, the campaigner next door

After months of being immersed in our community she says, "This is such a wonderful bunch of campaigners, each with a different skill set". 

Yet it is she who has brought them together and galvanised them into a collaborative group, Future of Down's who are advocating with you. And it is she who has believed so passionately in the need for a discussion around the ethics of the way antenatal screening is implemented that she has worn her heart on her sleeve and opened a window into her family's world to spark those vital dialogues. Her film is set to change the way we view Down's syndrome by celebrating the condition.  
Thank you Sally for leading the way.

Another key player stepped forward from a group outside Westminster to make her voice heard recently. This was not a protest, nor a march, not even a demonstration, but an upbeat gathering of some of the most positive individuals to ever take to this famous space. Champions with Down's syndrome and their families wanted the world to know that their lives are wonderful and full, that they do not suffer. 

The enthusiastic young woman who spoke to those gathered was Heidi Crowther. She works in a hairdressers and also has Down's syndrome. She said,
"We are all equally valuable and should be equally valued. Children with disabilities are part of the richness and diversity of life."

And you can't argue with that.
Thank you Heidi for encouraging people to listen to your insights.

Mik Scarlet, respected journalist and disability campaigner, rounds off this piece where Gillian started it. 

He wrote after speaking with other sea changers, "While we all came from disparate backgrounds, creative techniques and output, and campaigned on a wide range of issues, we all thought that tomorrow could, and should, be better than today. As I wheeled through the inaccessible streets of Brighton, and then fought my way into a bar that had two steps into the front door I did not let this get me down."
 "I could only see what could be, not what was. That is the power of dreaming."
Here's to turning dreams into reality. Thank you Mik.

And so, we focus on good practice, we work to join that up, and we continue to change perceptions of Learning Disabilities by celebrating together and creating a new narrative. We learn from the past and we believe in a better future. We paint daily pictures of our lives and set them adrift in little bottles for others to find. These are the sea changers.

What are your thoughts on the new antenatal screening tests and the way they are being implemented? 
Anyone with a professional or personal interest can submit evidence to the Nuffield Council of Bioethics investigation into the ethics surrounding the implementation of antenatal screening. 
Visit the page here to find the survey to make your voice heard.

Win: Oxford Reading Tree Book Giveaway

Grab your chance to win a copy of Oxford Reading Tree Stage 2 Traditional Tales featuring The Tortoise and the Hare with our giveaway!

Win: Oxford Reading Tree Giveaway via Downs Side Up

When teaching Natty to learn to read we used a combination of whole word learning as recommended by See and Learn, Jolly Phonics and Read Write IncRead our top Reading and Writing Tips for Children with Down's Syndrome here.

She's always loved traditional stories at bedtime and this level 2 collection featuring versions of the Tortoise and the Hare and Dick Whittington didn't disappoint.

However, in a moment of sleep deprivation and having one too many things on my list of jobs to do, I accidentally bought 2 copies. No matter, we have one to giveaway to our lovely readers as a thank you for all their support! 

It's a brand new unused copy. One winner will be chosen at random on Wednesday 25th May 2016 at midday. You can enter by clicking one or more appropriate options on the Rafflecopter widget below and following on Twitter or Facebook.  

How to Spoil a Special Swimmer

Natty is one very special swimmer indeed.  She's also very good at surprises...

How to spoil a special swimmer

Since her naso-gastric tube was removed, she'd had her jabs and the all clear from our GP, Natty has been a little mermaid.  From splashing in the bath, to languishing under a shower, to sitting in the Caribbean Sea with her toes in the sand to taking swimming lessons, she just loves being in the water.

Now her approach to learning to swim has not been what you might call orthodox. It was tricky to sign up to lessons when she had frequent respiratory infections when she was younger. So we used to take her swimming by ourselves whenever she was well. 

You might find our tips for encouraging a child with special needs to swim useful here. 

Natty has always favoured swimming underwater, which we found scary, it was hard to let go, but we soon realised that she could do do a few strokes that way, before needing help to come to the surface. (Do be careful as some children aspirate water doing this).

On one particular trip to our local pool she siddled up to a group lesson going on. Being a visual learner and naturally inquisitive, she sat next to the teacher and watched. I'm not sure the lady was used to having her lessons gate-crashed, but she let Natty jump in with the others. While the students swam a width, I warned the teacher Natty couldn't swim more than 3 or 4 strokes. I suggested she got out, but Natty threw me a look that I'm now familiar with. The one that says, 'I've waited until I knew I could do it, and until I have the optimum audience. Now watch me.'

You guessed it, she swam right across the pool, unaided. I cried. Other mums cried, the teacher had a tear in her eye. Natty had surprised us all and she was hungry for more.

That was 2 years ago and we've had lessons with this aquatic miracle worker ever since. Natty developed her strength and technique and can swim a width with ease, on top of the water too, and she's been working up to a length of a small holiday park pool, although she tended to stop at the side for little breathers a couple of times en route.

The Down's Syndrome Association got wind of her dolphin-like passion, and filmed this little clip of her and her friend Ella as part of the World Down Syndrome Day celebrations.

That was a couple of weeks ago. And watching that film got her thinking...

This time it was school swimming lessons. The stage was set, the audience was there in the form of TAs and teachers and there were plenty of peers to copy. Natty's target was a length, but this time an olympic size pool, that's 25 meters long if you didn't realise. We were nervous. Could she do it in one go?

When I collected her from school that afternoon her support worker was beaming,"She did it!"
"She swam a length?"

I scooped Natty into my arms and squashed a kiss onto her rosy cheek. She looked exhausted from all the effort, her hair still smelling of chlorine and crisps crunched in the minibus.

"But she kept going!"
"She got her 100 meter badge!" 
"4 lengths!" I couldn't believe it.

"Yes, she just followed her friend Marie, but she didn't stop there."
My face crumpled into a puzzled expression.
"She kept going, she swam for 45 minutes. She did the best part of 35 lengths. with a few corners cut here and there!"

Natty went from never having swam a length, to swimming 35 lengths in one go! 

And once again she had astonished everyone, exceeded all expectations and shown us never to set limits on what she can achieve.

All I can say is that we have been in touch with the special olympics for advice on how to coach our little swimmer with Down's syndrome...

Our Tips for Spoiling a Special Swimmer 

1 - Sew a badge onto your child's swimsuit of bag so they can show it off with pride and display certificates earned on your fridge door. Consider making your own.
2 - Buy a book about swimming to share at bedtime. 
3 - Take them for a special swim treat at a fun pool with flumes or inflatables.
4 - Buy them a new swim suit, goggles, themed swim hat or make a funky kit bag to put it all in. 
5 - Throw a 'pool party' at home. Dress up, have a friend round and make hawaiian garlands or eat a picnic on a beach towel.

And just as luck would have it, Frugi Organic Clothing sent us a stunning Sally swimsuit in seaside flower spot, worth £18, to try for size.  It even has a pro racing back for the distance swimmer.

What a perfect treat! Thank you Frugi!

The new range are made from Oeko-Tex and are UPF 50+ as well as being chlorine safe, so I think it will be a firm fave on the beach, in the garden and when clocking up the distance training in the pool this Summer.

As part of the #FrugiFamily swimwear project, do dive over to Globalmouse Travels blog to see what splashing fun they are having with their costume choices.

Thank you for spoiling our special swimming #FrugiFamily

Blog Awards and a Year in the Life of Downs Side Up

I'm not sure if it was the shocking pink stilettos, or that my uniform of jeans and converse had been replaced by a shiny cocktail dress, or simply the fact that I was alone, hundreds of miles from home and out of my parent blogger comfort zone. Instead I'd been set adrift on the industrial blog seas. Either way, I felt distinctly conspicuous as I arrived at the UK Blog Awards on Friday evening.

If you haven't noticed, it's blogging awards season* 

(*Heck, that reminds me Frugal Queen, I still have one of yours that I collected on your behalf at the MADs two years ago...!)

Collecting Frugal Queen's MADs Award

These events are a wonderful way to celebrate all that is amazing about blogging, the way it brings people together, breaks down barriers, its cathartic properties, the support it brings and most importantly the way it allows information to be shared, isolation to be banished and important campaigns and charity work to be fulfilled. It is a lifeline for many.

I adore blogging and I often get a bit dewey-eyed about being part of such an amazing online network. Everyone agrees it's never about the trinkets.

Yet last year I won a couple of those shiny trinkets and believe me, it had a very unexpected effect. 

I cried. A lot. 

And then I went very quiet, a little guilty that others working equally hard to change the world hadn't won. I wanted to share them with everyone, thank everyone. Oddly, I didn't want to celebrate, despite feeling immensely touched that people loved and believed in Downs Side Up as much as I do.

Downs Side Up wins the Outstanding Contribution category at the MADs '15

And then a peace decended, I immediately became at ease with my blog, happy with it and all its flaws. It's clunky home-made, approachable feel. I decided it didn't need pushing forward any more. It had achieved all I set out for it to in the beginning. It had reached new families and supported them through shaky early days following a diagnosis of Down's syndrome, it had become a mouthpiece for those with Down's syndrome, it had spoken to the world and changed the public's perception of the condition, it had persuaded advertisers to adopt a more inclusive approach to advertising and it had put me in touch with wonderful medical professionals who wanted to listen and learn from our story.

My blog and I were at peace with each other.

So as I nervously snuck into Friday's glitzy UK Blog Award ceremony, founded by visionary Gemma Newton  and hosted by technology journalist Kate Russell at the beautiful Park Plaza Hotel, my primary aim was to meet fellow bloggers, share our story and connect with relevant brands.

Under my arm I had two copies of our book I Love You Natty. One for George's Site and one for Motortorque. But was such an overwhelmingly large event that I managed to hook up with neither so the books are in the post boys! 

I did, however manage to share a glass of bubbles with fellow Health and Social Care finalist Chris Lewis of Chris' Cancer Care Community and our richly-deserved category winner Caron who writes Caron Cares

Pictured with Caron Cares and Chris Lewis at UK Blog Awards

The wonderful surprise of the evening was that the judges 'Highly Commended' Downs Side Up alongside the lovely Eco Fluffy Mama

Out of 2000 blogs and 78,000 votes, that was a huge honour. Thank you to judges Cheryl Hersey of Action PR and Amanda Neylon of Macmillan Cancer who I didn't get the pleasure of meeting but who took the time to visit and read our blogs. And extra thanks to the lovely judge Sophie Mellor of Bupa UK who I was lucky enough to chat to on the night.

Downs Side Up is Highly Commended at the UK Blog Awards

As the evening went on, so many wonderful people took me under their wing. Conversation flowed as freely as the bubbles, and I found out some amazing things.

1 - A digital Marketing exec goes a funny shade of green when you tell them to 'Sod the stats', a mantra that I live by.  But a point that was backed up by organiser Gemma, albeit a little more daintily. 

Focus on influence and relationships. Not reach. Aka 'sod the stats.'

2 - Brands really want to work with the unique personalities that our individual voices bring to the blogosphere.  They are quite approachable after all.

3 - Bloggers are universally warm and welcoming people, whatever subject they write about

A special thanks to fellow small-dog-owning foodie finalist A Slice of Slim and her daughter who became great friends during the course of the evening.

Thanks to Digital Marketer James Barrass-Banks whose dulcet royalesque tones still ring in my ears, 'You're awesome, just you f***king remember that". That meant a lot James, thank you. 

And the lovely Storyteller friend-of-a-friend Lucy Campbell who introduced me to all the very friendly Hills Balfour gang as well as an entrepreneur we all respect, editor Nicky Cox of First News, the paper for kids  

It was interesting to chat to Events judge Mel Atkins of Ex Events and meet fellow DS parent and judge Matthew Cock as well as charity founder Sit of Events Trees.

A shout out too to the fabulously crafty Shelley Makes, the irrepressible force of nature Faded Spring, and Fairy Faye who I think I caught a glimpse of as I passed her in the lift as returned, aforementioned patent pink heels in hand, back to my ever so comfy and utterly silent diva suite where I slept like a starfish for 10 hours straight. (That *may* have been one of the highlights of the trip) 

4 - It's excruciatingly embarrassing when you hear a stranger saying nice things about your blog while you are in the adjacent toilet cubicle. It makes you run away without finishing what you came there to do, because you feel you're eavesdropping.

5 - Blowing one's own trumpet is not viewed as such in PR circles. It's viewed as summarising the essential unique selling points of your brand (USP for short)... or blog. It actually helps if others know who you are and what you do. They don't have time to find out for themselves. Summarising it in writing saves a lot of explanation. So...

Downs Side Up's Year at a Glance

... to that end this post is going to include a handy go-to summary of Downs Side Up's achievements over the last 12 months.

  • The Health Service Journal named me one of 25 Rising Stars for changing the face of the NHS, the only one in 2015 not to be a doctor.  (*shocked face*)  
  • Downs Side Up won a Britmums Brilliance in Blogging Award for its Inspiring Content (The one where famously I was outside talking to a journalist when it was announced!). 
  • It also won a Tots100, MAD Blog Award for making an Outstanding Contributon to Society.
    Collecting an Inspire Award from Carol Smillie at the Britmums BiBs Awards
  • I was named as a finalist in the Learning Disability Awards in the Carer of the Year section and was a finalist in the Mumsnet Campaigner of the Year Awards.
  • We ran a second print run of our 5* book for children I Love You Natty, having sold the first 1200 copies around the globe.
International support book for kids, I Love You Natty

Resources for new parents
  • We featured in publications such as Good Housekeeping Magazine, the Sunday Times, the Telegraph and the Guardian Weekend as well as being interviewed on LBC and Radio 4's Womans Hour and You and Yours. 
    Our feature in Good Housekeeping Magazine
  • BBC Spotlight made an Inside Out programme about the work we do alongside the local support group CDSSG here in Cornwall.
  • There've been round tables on Inclusion at Mumsnet Blogfest, talks on online safety at Britmums Live, and a panel discussion on digital activism at Blogfest and more.
    I joined Nimco Ali, Stella Creasy, Helen Lewis and Kirsty McNeill

  • We had tea with the Queen as a reward for services to charity. It turns out she serves nice mini battenberg cakes.

Downs Side Up arrive for battenburgh with the Queen

  • We've travelled to medical conferences such as Positive Choices and LDAN to deliver talks to student midwives and doctors and we made a film with NHS Scotland which will be used in training these professionals. The children are public speakers too now! 
Mia, 11, speaks to student nurses

Natty, 9, speaks to student midwives

  • Natty has featured in the latest Frugi catalogue, continuing to work towards #adinclusion and melt hearts wherever she goes. 
Inclusive advertising counts

  • The Telegraph like my little blog so much they've asked me to write for them. Watch out for an article on travel with kids with special needs coming soon.
  • Natty and her friend Ella produced a video for World Down Syndrome Day in conjunction with the Down's Syndrome Association. It's all about swimming, and friendships. And you'll love it...

  • I continue to write columns for sites Special Needs Jungle and the Huffington Post and have recently joined the ranks of Podcasters at Meet the Parents hosted by Tim Liew. 
  • I've had an article published in the Journal of Family Health, have written a chapter for Steve Hardy's forthcoming book for medical professionals working with patients with a learning disability, another for book Reasons to Smile and have been interviewed for book The Million Dollar Blog by Natasha Courtenay-Smith (as a blog that doesn't make money, but measures success in other ways.) We'll soon be joining the Down Syndrome Diary writers later in the year too, a book that takes glimpses into the lives of families around the world who are touched by Down's syndrome.  

And now I think I need a cup of tea. A large one, while I ponder that although awards are embarrassing and seemingly superficial, and a bit of a jolly, they are a brilliant way of spreading the word about what we all do. They are a way to pull key movers and shakers together to help each others' causes or promotions.

And for me, they are a way to get Down's syndrome on everybody's lips and in everyone's minds and hearts... and this is how we truly effect change and bring about acceptance and inclusion.

Natty Celebrates the Arrival of the SS16 Frugi Collection in her own Inimitable way

Do your children pinch your mobile phone and fill it with selfies and silly videos? 


Is that just my crew? 

Natty celebrates the Spring Summer 16 Frugi collection!

Well, last week Mia discovered the time lapse video button which made us all giggle heartily. The two partners in crime spent hours fast forwarding through their daily routines and recording it all for posterity.

So when ethical, inclusive, organic kids' clothing experts Frugi sent us a Spring gift of a gorgeous oh-so-Natty Little-Miss-Sunshine-esque blue and yellow sunflower dress, we decided to put our new found video function to good use. 

Natty features in the current SS16 catalogue here and here, and is always delighted to be compensated for her professional modelling services in garments, so we had a couple of the latest outfits already in her wardrobe.

Frugi fashions always mix and match perfectly, wash well and last forever. So here are our faves of the season. It goes without saying that they are all super duper quality and look equally good on the dance floor as the beach, teamed with wellies.

Enjoy that time lapse, won't you! Oh, and apologies if I got over-enthusiastic about the camera click sound effect... #amateur

Is the Frugi SS16 collection a match for the inimitable Natty...?

Global Mouse Travels are the next #FrugiFamily members in this blog hop, so jump on over to them and see which Spring Summer delights they've been trying on.

Inclusive Clothing Co. Gecko Seek Models

Would your child love to model? Would they like to join the band of diverse models working for ad inclusion? Details of how to get involved below...

Could your little one be a brand rep for Gecko clothing?

BBC1 Documentary with Sally Phillips Examines Down's Syndrome Screening

We are proud to have played a small part in this forthcoming important programme.

BBC One announce documentary examining Down’s Syndrome screening

 BY Lisa McGarry
Flashmob celebrations in London with Sally Phillips
Dragonfly has been commissioned by BBC One to produce a one-hour documentary that explores the impact of a new screening test that is said to detect Down’s Syndrome in 99% of pregnancies.
Actor Sally Phillips, who is a mother to a child with Down’s Syndrome, sets out to explore this emotionally charged debate and ask what effect the test could have on our society. Sally asks what the impact of this scientific breakthrough will be on the future of Down’s Syndrome, at a time when the health, life expectancy and wellbeing for people born with the extra chromosome continues to improve.
Earlier this year the National Screening Committee recommended the government make this new genetic screening test for Down's Syndrome available on the NHS. In a world where pre-natal genetic screening is predicted to become routine, this timely documentary asks what is the future for people with disabilities? The discussion will have contributions from experts and supporters on both sides of the debate including children and adults with Down’s Syndrome and leading professors in the field of genetics.

Sally Phillips meets key champions with Down's syndrome 

Emma Loach, Executive Producer at Dragonfly said, “There couldn’t be a more important time to explore the complex moral and ethical dilemmas at the heart of this debate. With developments in the pregnancy screening process and continuing advancements in gene therapy and gene editing, this film sets out to explore all sides of this contemporary issue.”
The one hour documentary is produced by Dragonfly, part of Endemol Shine Group. The Executive Producer is Emma Loach and the Producer/ Director is Clare Richards. It was commissioned by Maxine Watson, Commissioning Editor, Documentaries.