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

Why Take the Chance: Letting your Child take Risks

Sharon Paley happened to read an article I wrote for Learning Disability Practice back in the Spring of this year. We became friends on Twitter, she liked the positivity of Downs Side Up and I greatly admired her work in the intellectual disability field. She introduced me to her former employers BILD (British Institute of Learning Disability) and we've since done some work together.

Sharon and her husband recently wrote this article for Voice, an Australian Magazine for parents of children with Down Syndrome. It deals with the subject of letting go, letting your child with a learning disability make choices, take risks.

This subject resonated deeply with me. I've always been a protective Mum since Mia was born, but when Natty came along with her health issues and vulnerabilities I became more so. My sensible, former teacher's head knows I have to let them try new experiences, often beyond their immediate capabilities and I do this. But often it is my husband shouting 'let go' while every fibre of my human instinct screams no.The following is Sharon and Mark's article from Voice, reprinted with permission. The original photos have been left out and I have substituted moments of 'carefully assessed risk taking' in our journey of parenthood. Believe me, the photographer (me) was shaking, feeling sick with fear, and tear stained in each and every case.

It took 20 minutes to persuade Natty to get in the water with the dolphin but I knew it would be worth it in the end.
Natty's fearless leaping into the sea frightened me more, but just look at her face!

Why take the chance?By Sharon Paley and Mark Wakefield

Caroline Playle Reviews Resource for New Parents: Down's Syndrome

Review of Talking About Downs Syndrome Cards

2015 / Lisa Warner 

I’m excited to share this lovely review with you all of Hayley Goleniowska’s Talking About Down’s Syndrome Conversations for New Parents by Caroline Playle.

Caroline Playle is a Mum to three children. One of whom has Down’s Syndrome. When Seb was born she was shocked to be told he had Down’s syndrome. She knew nothing about the condition, aside from outdated assumptions and stereotypes, and was full of unnecessary fear of what the future had in store for her family.

The reality could not be further from that vision. Caroline and her family lead a typical life together, facing the same joys, wonders, challenges and experiences as any family. Caroline started sharing snapshot’s of their lives together to show that Seb is a typical six year old who attends mainstream school, loves reading, football, chips and ice-cream and hates having his hair washed. Caroline shares that her son is a reflection of his family and upbringing, he is not a list of characteristics in a textbook and he is more like their family than anyone else with an extra chromosome 21 . 

What I love instantly about these new Fink Cards is their simplicity. The bold, confident colours and clear font makes them very approachable.

When I was told my baby had Downs Syndrome I threw myself into researching the condition. It was utterly overwhelming, so much information to take in at the same time as becoming a new parent. These Fink cards are absolutely perfect, they are beautifully concise and the card format means they can be taken in small chunks and you choose when and what feelings you wish to explore as and when you feel ready to take on more information. Plus we all know that talking helps with coming to terms with an out of the blue diagnosis. These cards encourage talking in a really gentle way. I can imagine these being so useful at support groups of parents with new babies, getting to know one another and sharing their experiences.

Best of all these cards are about YOU, YOUR baby and YOUR feelings. They are not telling you what will or will not happen, they are not filling your thoughts with all sorts of scenarios that may never come to fruition and they are not limiting your child or your child’s ability. This for me is the genius part of the idea. These cards allow you to explore your thoughts whilst keeping the focus on you and your child and not anyone else with Down’s syndrome.

My biggest regret when I was told my son had an extra chromosome 21was wrongly seeing him as “Down’s syndrome” instead of seeing him as my son. These cards will go a long way to allowing parents to take on board how they are feeling and where they are heading without the unnecessary fear and pressure of a stereotypical idea of what they might otherwise have thought lay ahead. I have no doubt this resource will go a long way to making sure new parents facing a diagnosis don’t miss out on precious, early moment by fearing an outdated or unknown future.

A really fantastic resource for any new parents faced with a recent diagnosis, their families, and medical and health professionals. I have even found them useful in exploring my own feelings, 7 years down the line!

For more information about Caroline please visit her Blog or find her on Twitter and Facebook.

You can order sets of the conversation cards direct from Fink, priced £14.99.

Resource for New Parents: Talking About Down's Syndrome

School Camp for Children with Special Needs: Our Top Ten Tips

Last week one event made me more highly strung than a Wimbledon player's racket, and when it was all over, the headache, light sensitivity, strange metallic taste and exhaustion of a migraine befell me.

What on earth had made me so stressed? School report? Annual review? Meltdown in the supermarket?

No....   Natty's first school camp! 

Here are my top ten tips to avoid that headache when it's your child's turn.

Natty, who has Down's syndrome, returns happy from her Summer camp

National Portage Association Back New Resource

Fink Card Review by Kerry Bailey of the National Portage Association 

Talking About Down’s Syndrome: Conversations for New Parents by Hayley Goleniowska and Fink Cards

Talking About Down's Syndrome: Conversations for New Parents

I was honoured and delighted to be asked to review the new fink conversation cards Talking About Down’s Syndrome, Conversations with Parents written by Hayley Goleniowska.

"Q: How did you celebrate your baby's arrival?"

National News Interviews on Testing and Down's Syndrome

Relaxing with our Girls

"Right girls, lets make some popcorn and go and sit on the sofa and cuddle up." 

It was time to watch Pets with the Xtra Factor Strictly Do the Most Talented Things Whilst Coming to Dine with Me or whatever it is that's on on a Saturday evening these days. Daddy Downs Side Up was away, and we had a girlie evening planned.

We'd been in our pyjamas for the last hour and had just taken our lovingly made meringue for the Big Lunch out of the oven ready for the next day. I was washing the last of the dishes and had poured a glass of something cold, crisp and white in readiness for full relax mode.

An ordinary Saturday turned into a media day in minutes

The phone rang. Thinking it was Daddy, Mia answered it with an excited "Hiya!" Silence while someone spoke on the other end of the line. 

Talking About Down's Syndrome - Conversations for New Parents

I am more than just a smidgen excited to be sitting writing this blog post next to a cardboard box brimming with colourful, shiny, inviting packs of cards. The cards are not part of a game. There's no element of snap, no quiz questions. There is no competition or race against time.

The Fink conversation cards are bright and inviting

Are Women Given Enough Support at Antenatal Screening Tests

Do women really have a choice whether to abort or not following an antenatal diagnosis of a disability?

Are we walking blindfold into a society where eugenics is gently-presented, sugar-coated and unthinkingly accepted? 

Are we fooling ourselves that we are exercising choice in our pregnancies, where actually choice, the choice to continue with certain pregnancies is being removed?

This week a new 'safer, earlier and 99% accurate' blood test was unveiled by Great Ormond Street Hospital. I can detect Down's syndrome along with other chromosomal conditions. I've been asked countless times by the media to quote my thoughts about the test. What concerns me most is how the test is implemented.

Are women given unbiased support to make informed choices at point of diagnosis?

It’s easy to assume that the moral dilemma of whether to abort your unborn baby that you’ve learned has a disability, is confined to a shouty debate between pro-choicers on the right to end a pregnancy at any stage, for any reason, and equally vociferous pro-lifers camped outside abortion clinics with their gory billboard campaigns, designed to shock and scare.

My Top Ten Books About Down Syndrome

What are your favourite books, factual or fictional, for adults or children that have a theme of Down's syndrome running through them?

What are your top books about Down's syndrome ?

There are so very many and everyone has their preference. It's impossible to include them all here, but I think for me, the following would be my essential capsule library. These are the books I turn to for advice, those that make me smile, those that make me weep and those that have kept me going when the going got tough.

My Tops Ten Books About Down's Syndrome 

A Minor Adjustment by Andy Merriman
Sarah Merriman is six year's old, conventionally naughty and enchanting by turns, and a radio star. But unconventionally, she has Down's syndrome.

What is Portage and why is it so powerful?

This article first appeared on the Mencap website

I'm a mother to eight-year-old Natty who has Down’s syndrome. Portage helped to give Natty a great start in life – she is flourishing in mainstream school and is also fronting national advertising campaigns as a model.

Portage is a powerful early years service

But people often don't know what portage is, so I just want to highlight why it was such a life-saver for me in the early days.

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.

Dear Past Generation Mom: who wished she had aborted her son with Down's syndrome

The following was written after an article that appeared in the Daily Mail this week that came with the designed to shock-and-divide headline 'I Wish I'd Aborted the Son I've Spent 47 Years Caring For'.

Rather than lashing out at the mother speaking in the piece, I felt I needed rather to consider the times her son was born in,  her state of mind, and instead question the journalism at work which contained no regard for the voice of the man at the centre of the article which was clearly advising abortion.

Families in the 60s had a much tougher battle than we do today, and many many mums and dads and siblings were, and still are, incredible pioneers. I think this woman's opinions, which were later aired on Loose Women, are thankfully rare.

The following is written to a woman like the one the article portrayed, one who became bitter through lack of support. 

She is in no way like any of the parents of that generation that I am blessed to have met and follow in the footsteps of. Parents, and siblings I count as guides and support, such as Mardra Sikora, Sue Bessell and Elizabeth Corcoran.

Kristian Naylor writes about his Uncle Martin

Dear past generation Mum, 
(who wished she had aborted her son with Down's syndrome),

I note with respect the hurdles you have faced. 

I Love You Natty: An Important Book Announcement/ Giveaway

We nervously launched our little book, written by our eldest daughter Mia, into the big wide world just under 6 months ago.

'A simply beautiful and touching account. 

I wish this book had been around when my daughter was born.'

'Every parent and medical professional should read 

this true story of life with Trisomy 21.'

'Educational and full of love, this book shows how 

the family have adapted and carried on.'

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

'Downs Side Up is a campaign blog to watch' 

The Financial Times newspaper

We have been humbled and astonished at the response to the sibling introduction to Down's syndrome:

• I Love You Natty has been shipped to every corner of the globe.
• It has featured in numerous magazines and newspaper articles and has been reviewed by major charities, such as the DSA who gave it 99*
• Natty took a copy onto the ITV Lorraine Show.
• Proud owners of the sibling introduction to Down's syndrome include: Lorraine Kelly, Norman Lamb MP, CBeebies Dr Ranj, Prof Nikolaides of Harley Street, Fiona Bruce MP, oh, and Prof Richard Dawkins (well, he needed a little educating).
• Copies can be found in Oxford and Cambridge University Libraries, The Houses of Parliament, The Department of Health, school classrooms, Great Ormond Street Hospital and the bookshelves of a house just like yours.
• Bloggers such as Honest Mum have reviewed and run competitions.
• We have donated over 100 books to various organisations, supporters and parents. 
• It is now stocked in Waterstones and Sainsbury's Cornwall, as well as Amazon UK.
• Feedback has been 5* from all who have purchased it. 
• Youngsters with Down's syndrome say they adore the pictures and some children ask for it to be read to them every day.
• We were very excited to do our first book signing in Waterstones over the Summer and another one is planned for nearer Christmas. 

Natty reads her I Love You Natty to Lorraine Kelly in the green room before gowing on the ITV Lorraine Show

And we are very proud to announce that we have finally covered our creation and printing costs, (phew!). It was a risk but we've done it.

We are now able to think about funding a reprint and making some minor amendments. We are very excited to now also be able to offer the book to charities, support groups and organisations wishing to sell them on. 

So if you would like to stock I Love You Natty or review a copy on your blog please do get in touch. 
For retailer costs contact me via downssideup@gmail.com

Thank you all for your immense support getting this project off the ground. I believe so passionately that such a book is needed, as it was exactly what we sought for Mia after Natty's arrival.

In the meantime we would like to celebrate by giving away 1 copy per week of I Love You Natty during October which is Down Syndrome Awareness Month #DSAM2014

You can enter below for your chance to win.

(Week 1 - Winner was Becky Smith)

a Rafflecopter giveaway

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

Make Positive Choices for Learning Disability Nurses: Together we are Better

The force for change that is the wonderful Helen Laverty recently hosted the 10th Positive Choices Conference for LD Nurses and professionals in Kingston #10PC14.

I was so very sorry that I could not attend to speak as invited, I was so very disappointed not to be able to meet the medical angels that support us all, and the incredible, inspirational speakers she had lined up, such as actress Sarah Gordy (who has DS), who has become an online friend. Infortunately illness and storm-damaged railway lines conspired to keep me in Cornwall, so in lieu of my speech, I made a little film for the delegates, a film outlining the role of learning disability nurses for our family, what they have done for us and what they mean as we move forward through Natalia's life.I wanted them to know how vital their job is. 
You can watch it here:



             

What Did World Down Syndrome Day Achieve?

On the 21st of March, 2014 we joined forces to celebrate the 9th World Down Syndrome Day together. The charities Down's Syndrome Association and Down Syndrome International decided that the theme of the day was health, and as a way of getting everyone involved we wore our funkiest socks... 

'For we are all colourful and unique.'

(That's a phrase I coined as a stock response when people ask what the sock theme is all about.)

But I was conscious of mutterings in the wings:

Downs Side Up produces its first support book

Mia and Pippin dream up a new title for her first book

Just over 7 years ago I sat in front my computer screen in the late evening whist expressing milk with an industrial pump that would service a herd of cows, and I Googled 'Down's syndrome' for the very first time.