What Are You Doing for World Down Syndrome Day?

Subtitle: A Less Less Nakedness and a Little More Education

World Down Syndrome Day 2016

My laundry basket plays host to at least 20 solitary socks in a variety of patterns and colours. They've been living in this medley of footwear without their partners since this time last year, or maybe the year before that.  

Occasionally I tip them all out onto the work top in a vain attempt to find their long lost friends, but still they prefer to live in a happy jumble of brightly-coloured difference.

You see World Down Syndrome Day is marked by folk wearing #lotsofsocks, as I have always said 'For we are all colourful and different.'

It's an eye-catching idea, but this year I won't be shouting about mismatched socks. It's not that I disapprove if you do, I might wear a couple of my faves from the melée and the children will do the same. It's just that my sock basket has made me grumpy of late.

Neither will I be taking my clothes off in a classy re-make of calendar girls again. Yep, one WDSD I bared almost all (apart from the aforementioned socks) egged on by Kate from Striking Mum and her Naked Mums series, to raise money for the Down's Syndrome Association and to celebrate our Mummy bodies... 

...I think the total reached around £3575, but possibly that was to get me to put my clothes back on!

Two years ago the #TeamT21 bloggers pulled together and spread the word about donating via a text message. Somehow this went viral  with nothing more than a hashtag and some determined champions to fuel it, and we raised around £10,000 in 24 hours. 

I will never forget the excitement, standing in my kitchen too excited to sit, or even go to the loo, tweeting all day for all I was worth and watching the number rise and rise. That can never be topped. 

But no, this year I have decided that I cannot take the excitement. The adrenaline-fuelled frenzy. Perhaps it's because we are a year further along our journey, perhaps I've got it out of my system, perhaps I have a little nagging feeling that WDSD is more about celebration and education than fund-raising, perhaps I've just reached a certain age and stage.

So, I will leave the parachute jumps and the baths of beans to the younger advocates with more energy.
I will cheer from the sidelines and focus on sharing vital information and stories of celebration. We'll change our avatars and watch building light up in blue and yellow. We'll feel part of a global community holding hands around the world.
  

Buy I Love You Natty for World Down Syndrome Day

One small token I decided on is to give the profits of all copies of our book I Love You Natty sold this month to the Down's Syndrome Association who support people with Down's syndrome throughout their lives.  I've also decided to slash the cost of the book for March to make it as affordable as possible. We're throwing in a free Downs Side Up magnet from Camaloon too!

Click to buy now!

You don't have to buy a book to help spread the word though, just join our Thunderclap here to shout to your followers. And if you're new to Thunderclaps it's worth taking a peek to see how they can help your campaign.

We're also very excited to have been part of making a small film with the Down's Syndomre Association as part of #MyFriendsMyCommunity. 

More about that when it's unveiled. It'll be worth the wait I can assure you *smily face*

Explaining the Radio Silence: What Have We Been Up To?

Sometimes life rattles by at such a pace doesn't it. I mean really, where does the time go?
There are so very many things in the air at the moment but I just don't seem to be able to find the time to sit here and share them with you over a cup of tea. 
My friend Emma says that she enjoys a little catch up newslettery kind of a post once in a while, so here goes... 

Something for the Weekend 

Read all about it              

We've been busy on the media front. A couple of months ago we were interviewed by The Guardian Weekend Magazine for a big spread about Down's syndrome. The piece has been on hold for a while and I had to promise not to talk to any other publications, (it's hard for me to keep quiet but I did!) but the time has finally come and it should be in this Saturday 17th supplement. 

I'm nervous, I always feel very vulnerable when we go public as a family, but I trust the journalist implicitly. And to be in a paper I often actually buy is quite a novelty. I still won't be reading the comments though.

Changing Perceptions in Sequins and Glitter 

Natty being preened for a glossy photoshoot

Then back in August Natty and I went up to London for a photo shoot for the UK's largest selling glossy magazine. It's for the Christmas edition which comes out next month, so more about that nearer the time...but needless to say I am bursting with pride that they wanted a little model with Down's syndrome within their posh pages.  Natty certainly is changing the face of beauty one smile at a time.

Did I tell you she called a fellow passenger a 'big fat pig' on the train on the way there though? She did. She actually did. She wasn't, she was lovely and brushed it off with a laugh. Lucky.  *Sigh*

Charity Christmas Catalogue 

Mencap have taken two large boxes of our little book for children I Love You Natty to sell in their Christmas Catalogue this year. We are so very excited to be able to reach more young families, support groups and school this way. 

*shameless plug* 
And with profits going to the learning disability charity, what better reason that to buy a copy for someone's stocking this season. 

Training Professionals 

Remember we popped up to Edinburgh in August to make a podcast film with Hazel Powell and the NHS Education for Scotland (NES), and meet nurse and midwife trainers and well as the lead nurse for Scotland? Well, the film is finished and nearly ready to share with the world. We've watched it and hope that it will provide a springboard for discussion in medical professionals' training, particularly in the arena of delivering a diagnoses and supporting new parents. I am quite certain that it's a powerful watch.

Paul and Emma give an inspiring speech

Last week, I headed over to Northampton (which turns out to be incredibly tricky to reach from Cornwall!) for the National Portage Service Annual Conference. I was lucky enough to be able to share our journey and experiences of Portage with other families and professionals, as well as learning so much from the other speakers, including Paul and Emma who share a house together and live independently with support. 

Writing for Change

I've had a couple of very exciting writing projects to get my teeth into as well of late. I was asked to produce a chapter for a book on improving the healthcare of people with a learning disability which is just about finished. Well, it's been submitted but I keep tweaking it and writing to the author with an updated file. 
Must. Leave. Alone. 
Sorry Steve.

The British Medical Journal also asked for an article for doctors working with adults with Down's syndrome. With a massive amount of input from actress Sarah Gordy from Wood for the Trees, and speaker James Hamilton, who both have Down's syndrome, as well as the General Medical Council, the piece is nearly finished. I've really enjoyed working on it and have learnt a great deal in the process.

Oh, and The Department of Health published a little piece about Natty starting primary school as part of their #BestStart0to19 campaign last week. You can read Transition into School: Small Steps for Little Ones with SEN on Viv Bennet's site at here.

Awards 

MAD Blog Awards
I was an emotional wreck after being announced the winner of the MADs Blog Award for Outstanding Contribution. To say I felt over-whelmed was an understatement. My face mostly looked like this all evening: 

Proud, humbled and emotional at the MAD Blog Awards @TomArber

I bumbled through an ad hoc acceptance speech. And cried. A lot. Thank you to everyone who put my name forward. It really means such a lot.

Mumsnet Blogging Awards
Then more excitement. Mumsnet is also a large network of very serious writers and I could never have imagined that Downs Side Up would be chosen from hundreds of entrants as a finalist in the Campaigner category of their blog awards, alongside the simply incredible bloggers Comeback Mum and Complicated Gorgeousness, all winners. 

I actually had a bit of a funny turn when I saw this news but am now looking forward to a group hug with the others at Blogfest, coming up in November. 

Learning Disability Champions
I also found my name listed as a Learning Disability Today Champions finalist. I find this very embarrassing. I have sat on this news for weeks because I can't bear to keep bleating on about awards... new parents landing there don't want to read that. But by the same token I am hugely proud to have been considered by medical professionals and the editors of Magazine Learning Disability Today as a leading parent advocate in the world of LD.

So many of my inspirations and gurus are also listed, from teaching staff, to nurses and self-advocates, as well as fellow bloggers. We are all working together for better understanding and equality for those with a learning disability. So pop over and have your say here. 

********

I think that's it for now. We are off for a family break together shortly and that is the best news of all. Uninterrupted time with our girls. Because at the end of the day, we are just an ordinary family, doing what ordinary families do.

Big Sister Mia Describes What a Learning Disability Is for #LDWeek15

My name is Mia, I’m 11 years old and I have a younger sister called Natty who is 8. Natty and I both love netball and horse riding and singing and baking cakes and watching films. We both have Blue Peter badges. 

Mia from Downs Side Up writes about Learning Disability for #LDWeek15

Natty also has Down’s syndrome, which means she has an extra chromosome in every building brick of her body. I think they look like wonkey Twiglets.

Fabulous Book Feedback from our Youngest Customers

Fabulous feedback from the readers of our little book is what motivates us most.

Fabulous book feedback from Downs Side Up's youngest customers is what motivates us. Thanks to Brídín Nic Dhonncha for permission to use this photo of his sons.

Publishing your first book is a daunting process 

Really it is. It feels like sending a much-loved child out on their own into the big wide world. There's a little bit of your soul within those pages and you don't know where they will end up.

One Sister's Gift of Words: Scope Review I Love You Natty

Thank you to SCOPE for their support in producing our book I Love You Natty and for this article today. 

The original can be found on their site and I have to admit I had a few tears reading it back in the kitchen this morning. 

Real life stories

I love you Natty – a sister’s gift of words

26 November 2014 emmasterland Leave a comment

Hayley Goleniowska, founder of Downssideup tells how a loving note from one sister to another sowed the seed of a book about hope, love, facts, family and inclusion. 

Nearly eight years ago, I sat alone at my desk on a cold December evening. Flames danced in the fireplace as my heart felt heavy with uncertainty, shock, fear and worry.

As I typed the words ‘Down’s syndrome’ into my computer, I hoped to find a way of explaining to the two-year-old who was sleeping upstairs, why her new baby sister was not yet able to come home from hospital. I needed a way to make her understand why Mummy and Daddy were so worried. I needed a vehicle to start a discussion about why we are all different and how we all need extra support sometimes.

And, deep down, I too was looking for something positive and visual that would reassure me, would show me how our family life might shape up in the unknown years that lay ahead of us.

Outdated, depressing images jumped off my screen, but I shut them out and gravitated towards the most positive looking books I could find. I ordered them all. Some  were outdated or contained incorrect information, and none seemed to contain the facts, written in plain English for children, with colourful photos. And oh, it was the photos I wanted to gaze at for hours, for they portrayed truly what was possible for our youngest daughter, with support.

As the years passed and our family found its way on a new path, the thought of that book we had searched for stuck in my head. I wasn’t sure how to approach creating it and I had absolutely no experience of publishing, so the seed of an idea was left to gently germinate.

A loving note

Mia and Natty holding I Love You Natty book

When my eldest daughter Mia was around six or seven years old, she was a very prolific note-writer. She would leave drawings and notes for us all around the house. One day I found a beautiful note for Natty, saying just how precious she was to Mia, and how her life wouldn’t be the same without her in it. It brought a lump to my throat and was a lightbulb moment for me. I realised here was the basis for the book. Mia’s words would form it’s core.

It took around two more years to complete the work. I asked Mia questions and her answers covered descriptions of Down’s syndrome, support services, heart surgery and even the annoying things all siblings do. We then chose family photos to accompany the words.

But what now? We almost had a book, I ran it through a Photobox website and it came back looking very sweet. Very plain and small but it was the first time I saw that we might actually have created what so many others might find useful. I sent digital copies to the main UK charities, asking for their advice and thoughts. They all loved it and agreed to be listed in the back cover.

I approached a couple of publishers, but our little book was too niche.I looked at printing on demand options, where one book is printed each time a customer buys it. That seemed like the way forward. Now we just had to get the document in the right format.

A friend and former colleague, Sarah, offered to help. The weeks passed and I thought we were close to our goal. I felt the nerves rise at the thought of sending such a personal work into the big wide world. One evening she arrived at my house with some large card tucked under her arm. It was the proof of the book, and what I saw brought me to tears.

Book cover of I Love You Natty

My friend Sarah had taken Mia’s book and painstakingly added in not only our photos but Mia’s drawings and beautiful designs too. The whole book looked nothing like the pale little initial idea I had had printed. It was a work of art, a book that children and babies of all ages were going to adore looking at, along with their parents too.

Of course now the thing was too elaborate to fit a Print on Demand standard template. And to print such a colourful book on demand would hike the price per unit to well over £10, nearer £12 and I was adamant that it should be as affordable as possible to all families. £5.99 was a limit I wasn’t willing to go above.

There was only one thing for it. We were going to have to bite the bullet and self publish! A local printer was found, ISBN numbers and copy write purchased and we were off. It all took around a year to do, but finally, in May this year, around 1,200 books arrived at our home. We were to ship them from our front room each time someone ordered one via Amazon.

We were astonished at the response, humbled. The feedback from parents and charities has been incredible. The books have been shipped to all corners of the globe and are now available from Waterstones online as well as Sainsbury’s in Cornwall.

Mia has been featured on TV and radio and in magazines and journals across the UK, and I Love You Natty: A Sibling’s Introduction to Down’s Syndrome is adored by children, teachers, parents, lecturers and medical professionals everywhere. It’s a book of hope, love, facts, family and inclusion.

We have covered our initial costs and have been able to donate over 100 copies and we are now saving up for a second print run. It’s been hard work, but worth the risk, sweat and tears. And I hope we have created something that will make a real difference. Thank you all for advising on, supporting, buying, reviewing and recommending I Love You Natty.

To order a copy of I Love you Natty visit Amazon.

Chatty Natty on ITV Lorraine Show: The Face of Representation

Did you ever have a moment in your life that was so exciting, so surreal that you weren't sure if you dreamt it up? 

The kind of moment where you are plucked from your ordinary life and sucked into a parallel universe for the briefest of whiles, before being plopped back safe and sound, albeit exhausted and clutching a few souvenirs?

Well, if it weren't for two pink Lorraine clocks in the girls' bedrooms, I would indeed be wondering if I had dreamt up our trip to London to feature live on the ITV Lorraine Show.

An I Love You Natty Book Signing to Remember

We'd never experienced a book signing. 

Well not from the nervous-that-no-one-will-turn-up angle anyway.

I Love You Natty book signing

We'd queued up with our copy of books for respected authors to sign once or twice before. But they were experts, they belonged in book shops scribbling their signatures into pages.

Today was our turn, our turn to sit by a table full of I Love You Natty: A Sibling's Introduction To Down's Syndrome while people came and scrutinised it, and we had no idea what to expect.

Last night as I tried to prepare by working out what we would all wear and gathering props for the table, I read an article by an accomplished author on signings. He said that if you meet one person and chat about your book at a signing in a local store then the event is a success. It's about meeting people and not about selling books. 

Wise advice I thought.


I then saw a poster on Pinterest that said;

"If I inspire just one person with my book, 

if I change just one life, then my life will be complete."

That is my motivation exactly. I nodded at the screen.

And after reading these two things I decided that it didn't matter if we just chatted to one person today and that person didn't buy our book but went home with a changed perception of Down's syndrome. That was the aim.

We arrived early, with bucket loads of chromosome-shaped jelly beans, a box of books and Mia's favourite teddy Huggy, who makes an appearance in the book. Natty and Daddy and our screenwriter frend Peter Cadwell joined us later.

And from there the next 3 hours were a blur. 

A wonderful happy, emotional blur of chatting to families on holiday, local families, regulars in the shop, staff, parents and classmates and those who kept dropping by for another handful of jelly beans (I will respect the anonymity of those members of staff who are particularly partial to fruity confectionary!)

At one point there was an inspirational Mum who runs a Down's syndrome support group up country, and couple with a grown up son with DS, a new local Mum and a friend who had made a huge effort to bring her son who has other disabilities that make town a tricky place to be. And we all chatted and hugged and took photos at once and simply knew on a deep level that we understood each other's lives somehow. Waterstones began to feel like the venue for an old school reunion even though most didn't know each other.

I Love You Natty book signing

Mia and Natty signed books, pen got on posh frocks and perhaps one too many jelly beans were consumed, but nobody cared. For this was a book signing Downs Side Up style.

And I realised that book shops are just as Meg Ryan describes in You've Got Mail. They are community hubs, so much more than simply sellers of words on paper. They provide a place where regulars congregate for coffee and buy a new dream to take them away from their own lives for a few hours at a time. They are welcoming and inclusive. They feel safe.

One lady who the staff knew by name, described how the team there had helped get her through bereavement when her husband passed away. They actually cared about her well-being. 

And yes, there were folk who scrutinised our precious work and turn up their noses and put it down and walked away, those who tutted because we were taking up too much floor space. But that is a levelling experience, we all need to know exactly how books are greeted by Everyone.

And so to our local Waterstones, I cannot thank you enough for believing in our little book on what many would consider a niche topic. For creating window displays and mobiles and putting the book in pride of place. Thank you for suggesting the signing and giving us the confidence to go through with it. We have learnt so very much today.

We're home tired and with aching cheeks from smiling so much. And no, we didn't eat all the jelly beans, we'll save them for another book signing of I Love You Natty. We are another step closer to covering our self-publishing costs and being able to donate books to where they are needed most, and just as importantly we have come home with a renewed sense of being a part of a global team, who are there for us as much as we try to be there for others.

I Love You Natty: A Sibling's Introduction to Down's Syndrome can be ordered into any branch of Waterstones 

or online, priced £5.99

It is also available from Amazon £5.99 + P&P

99 Star Review by DSA Editor

Kate Powell is the editor of the Down 2 Earth Magazine at the Down's Syndrome Association. Kate also has Down's syndrome herself. We were honoured when she agreed to review Mia's book I Love You Natty

Her kind words of encouragement mean so much. High praise indeed. 

I   really like this book   because. I am impressed it’s great

This book is about a Sister(Mia) writing about her Sister(Natty) with Downs syndrome and they like Spending time together

This   Book is worth reading   because it’s Educational   for lots

Of   Children of all ages   this book can help a lot People s Views towards People with  Downs Syndrome. 

This book Can be the start of friendship between Siblings

I  will  give  this Special Book  99  stars  it’s  very new

Please read this book  don’t  look away

Signed  Kate Powell

You can read more of Kate's Editor's blog here.

I love You Natty can be ordered through your local Waterstones 

or purchased direct here from Amazon.

Win a copy of Mia's book!

The last week saw a heady mix of emotions as we launched our first self-published book: I Love You Natty: A sibling's introduction to Down's syndrome. We are giving two copies away on the blog this week (scroll down for details).

Silent Sunday

I Love You Natty: A Sibling's Uplifting Introduction to Down's Syndrome

Young girl from Cornwall publishes a heartfelt book to help other children welcome a new sibling with Down's syndrome

Seven and a half years ago I sat at my computer and typed 'Down's Syndrome' into the Amazon book search facility.

One little girl, aged two, lay in bed asleep upstairs. Another, aged a few days lay in an incubator in neonatal intensive care.

I wanted a positive, realistic book that would explain to our eldest why her baby sister could not come straight home, why Mummy and Daddy were shedding tears, why she had been christened wearing nothing but a nappy right there in the hospital the week before, why she would need heart surgery one day and how, hopefully (Hope is her middle name as it happens) they would have just as much fun and do all the same things together as any other sisters would with time and support. 

I wanted a book to carry the other adults in the family forward too, lift us from our place of desperation and worry, something that would tell us it was all going to be OK.

I found plenty of useful factual books, a smattering of outdated offerings, inspiring novels and biographies for adults and a lovely tale for kids with illustrations that we still reach for now, but the bright cheery snapshot of the life of a modern family that I needed to see as much as Mia, stuck in my mind and I guess it later became to basis for my blog Downs Side Up.

Then a couple of years ago I began finding little notes and poems, drawings and declarations of love lying around the house. This is Mia's way of letting us know what she is thinking, and we often leave similar treasures for her to find too. Some that she wrote for Natty were so precious that I kept them, and there in an instant one evening, I realised they formed the basis of a book.

She wrote, " I Love you Natty, you are the best sister in the world and so precious to me. You are so important to me and if you weren't in this world my life just wouldn't be the same."

We asked Mia questions to fill in the gaps, added our family snapshots alongside Mia's drawings and the book began to take shape. 

A dear former colleague who creates college brochures offered to create a document that we could use as a template to print on demand via Amazon. Nearly a year later, a lots of hard work and creativity, she showed me what she had produced. Our tears were a sure sign that the book had exceeded our wildest dreams and was sure to touch the hearts of others.

Mia checks the book proofs

A title tweak and some online bullying caused more stress than could be imagined, and then the realisation that the book was too elaborate to fit the standard print on demand template and to create each one as they were ordered was looking like it would cost over £12 each. 

Options? Options? 
It was a little late to find a publisher, we were ready to go and I was adamant that the book should cost no more than £5.99 to make it affordable to as many families as possible. The only obvious solution was to bite the bullet and print them in bulk ourselves, house them at home and ship by hand.

So now we are proud to announce the launch of Mia's ground-breaking and beautiful sibling support book I Love You Natty: A Sibling's Uplifting Introduction to Down's Syndrome. 

It's been endorsed by eight leading UK charities, including Mencap, Makaton, Portage and the Down's Syndrome Association, who have tipped it as the perfect introduction to Trisomy 21 as the condition is also known.

The book is available on Amazon, priced £5.99 + P&P  or can be ordered in to any branch of Waterstones with their Click and Collect service.   

ISBN 978-0-9929251-0-9

For bulk orders, or to speak to the authors, contact downssideup@gmail.com 

Since its launch we have been rushed off our feet, they are literally selling like hotcakes, so much so that I've only just found the time to blog about it! Our hope is to be able to cover costs and then give some away to charities and Health Visitors and so on.

The art of photobombing the 'books ready to post' shot

Already they have found their way into neo-natal units, libraries and schools and the home of at least one adoptive family and have been shipped to America and Australia and everywhere in between. That makes all the hard work worthwhile.

We hope you like our little book of love too...

I Love You Natty: A Sibling's Introduction to Down's Syndrome