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Talking About Down’s Syndrome – Conversations for New Parents 

By Hayley Goleniowska (2015)
published by Fink Cards ISBN 978-1-909002-29-6 price £14.99  Order directly from finkcards or call 01872 211782. Also available from Amazon.


Reviewed By Jim Blair, Consultant Nurse Intellectual (Learning) Disabilities at Great Ormond Street Hospital, Associate Professor Intellectual (Learning) Disabilities at Kingston and St.George’s Universities & Health Advisor British Institute of Learning Disabilities





‘Congratulations on the birth of your new baby.’ 
is the emphatic welcome message from Hayley to other parents of newly diagnosed babies with Down’s syndrome. Sadly all too often these are not the words that health professionals utter when giving news to parents that their child has Down’s syndrome. The reality is it is only an extra chromosome, so keep calm and carry on, yet society still conjures up images, visions and a future of little or no hope, worth or purpose for those individuals with Down’s syndrome. How very wrong that is.

Why I'm Going to Britmums Live

This will be my fourth Britmums Live, the largest blogging event in my calendar. It's a combination of workshops, awards and speeches, a chance to meet brands if you wish, to learn to chat, to indulge in a sneaky Prosecco or two.  I always come home with a new spin on blogging, I learn tips and tricks, and most importantly it is a chance to mix, network and make true friendships with like-minded writers.



Hayley from Downs Side Up at BritmumsLive 2012

Each year is different, I think because we progress along our blogging journey and we therefore go with different expectations and ideas, confidences and questions. In the beginning I had no idea where my blog was going. I wrote voraciously and, if the truth be known, it was a very cathartic, healing experience for me. I cried many tears into my keyboard as I wrote late into the night. 

Bloggers Invited for Royal-tea at Buckingham Palace

Our trip to Buckingham Palace was incredible, a massive honour. The garden party was a surreal experience that is tricky to put into words. But I'll have a go...


After our drive to London from Cornwall, there was little time for preening and bouffing and attaching feathers in our hair and fiddling around with those weird tights without toes that you wear with open-toed shoes to make sure you couldn't see the seam and flapping about having all the correct forms of ID and the right invite (not the posh keepsake one, but the orange paper one that actually admits one to the Palace).

Oh no, wait. That was just me. 

Bob sat watching repeats of Top Gear and laughing loudly, giving me an unwanted automotive running commentary, in between giving me time checks and saying helpful things like, 'Just brush your hair and stick the fascinator on', while I got hotter and hotter and more panicky about the 'hairdo'. I think it took him all of three minutes to throw on a sharp suit and tuck a colour-co-ordinated hankie in his pocket. 

*sigh*

We jumped in a cab from our hotel and headed for the Palace. We had plenty of time before the gates opened at 3pm. Or did we? Central London was total gridlock. We passed a car on its roof and goodness knows where everyone else was heading, but we were stuck in solid traffic. 

Hotter and hotter I became, under my trusty little dress and cashmere cardi, that had also seen No.10 Downing Street. I checked in the mirror to make sure a shiny nose wasn't scuppering the rushed make-up efforts.

I calmed my nerves with an 'obligatory blogger selfie', while Bob frantically checked his phone for alternative routes through the city. Time was ticking, and I wasn't sure if lateness counted as treason amongst the Monarchy.


Pre-palace selfie in the London cab

Never fear, once we arrived, at around 3.15, we immediately saw the long queues of hat-clad quests being admitted through the gates of the palace grounds. Everyone looked amazing, and I was put in mind of guests at a very large wedding in the loveliest setting imaginable. 


Photos were allowed outside, but not once through to the gardens

We were lucky enough to be introduced to Prince Edward. We chatted to him about Downs Side Up, supporting new parents, about the research that project Millie Moreorless is doing into maths for children with Down's syndrome at Bath University, about Natalia modelling for Sainsbury's, about the work of the Down's Syndrome Association and also Mencap, for whom his wife Sophie Wessex is a patron. I told him that we are all different and we all need help with things from time to time, and he agreed.

He was genuine, interested and took a great deal of time to listen to us. 

Later we stood in line as the Queen and Prince Phillip, Prince Charles and Camilla, Prince Edward and Sophie Wessex walked past. And a strange feeling washed over me. One of a sense of history, of traditions unchanged, of witnessing something very rare. The Queen was petite and beautifully dressed in lemon. Sophie was the very epitome of chic.


Key things to remember

So, what of the tea party itself? What of the inner sanctum? 

Well, I could bore you all day, so, with fellow bloggers Tania at Mummy Barrow, Sarah at Grenglish and Laura and Amy of Making a Baby Adventure all heading off to eat cucumber and mint sandwiches without crusts this month, here is a list of what to expect/do at a Royal Garden Party at Buckingham Palace:


  • Wear comfortable shoes with a wedge or stout heel. You don't want to sink into the grass!  
  • Wear a hat or fascinator. (Even if it doesn't suit you and you think it looks like a dead bird.)
  • If you do get to chat to a member of the Royal Family, you can do a little bob of a courtesy and it's 'Ma'am like spam, not Ma'am like harm.'
  • Get there early and be prepared to queue.
  • If you are hoping to meet someone you know in the gardens, you'll be lucky. The parties each host around 7,000 guests, three times a year, during May. It is a vast, but superbly organised event. I knew Annie Clements who runs Autism and ADHD was going to be there and watched out for her all afternoon, without spotting her once.
  • The buffet is a sight to behold. Mini scones, tiny slices of battenburg cake, fingers of sandwich and little chocolate cakes with HRH on them and the iced coffee, which you balance on tour plate, is to die for. 
  • Listen carefully to the brass band, they have a sense of humour. They were playing Skyfall at one point and I half expected Liz to drop out of the sky from a passing helicopter...  
  • Chat to a Yeoman of the Guard. This was one of the highlights of our afternoon. He told us fascinating facts, like how he is still paid in beer after each event as he would have been centuries ago. The Beefeaters are so named because they were paid in 'Mead and Meat'. 
  • The invitation states that photography is not allowed inside the grounds. Some people were taking photos and they were asked to stop by the Queen's Guards. There'll be plenty of official photos to remind you of the event afterwards.
  • Check out the umbrellas the Queen's Guards carry. I'm certain they double as ninja weapons for wayward guests. Umbrella combat has to be a thing, right? For illicit photo-takers maybe? 
  • Take it all in. Savour the moment. It's a once in a lifetime experience.
The crowds watch the royal party in the grounds
of Buckingham Palace

If only our girls had been there

And all through the event, I kept thinking of our girls, the motivation for all we do. The reason for working for change and for acceptance and support, for inclusion and belief. And a lump sat in my throat as I thought that they were the ones who deserved to be there, our girls who have made us better people who have taught us so very much. What is Downs Side Up without them?

No-one under 18 is ever invited of course, but I found myself daring to dream that one day, in the distant future perhaps they will be the ones to be invited. That Natty will stand and tell a Prince or a Princess what inclusion means from her perspective, and Mia will explain that having a sister with Down's syndrome is pretty much like any other kind of sister.

And for now, I was proud and happy that I had stood in that special garden and talked to a member of the monarchy on a subject that they probably rarely consider.


*****


Royals with Down's Syndrome

Princess Alexandrine of Prussia (1915 - 1980) (left in the picture) had Down's syndrome. 








What Does One Wear to Buckingham Palace?


Well, the moment is drawing tantalisingly close. We're off to a garden party at the palace.



We get ready for a garden party at Buckingham Palace

It's been a bit of a week. A week where matters other than trotting off to London to eat cucumber sandwiches in the Queen's garden have pushed to the fore.

The Roar Behind the Silence: Maternity Care Book review


The Roar Behind the Silence

Why kindness, compassion and respect matter in maternity care

One of the areas that writing Downs Side Up has led me into, is working with many wonderful medical professionals, including midwives. I have been invited to speak at many training events and conferences, and I'm always extremely proud to do so. You see, most of us are working towards the same aim, excellent support of women and the safety of them and their babies. These incredible, compassionate professionals are always keen to learn from the parents' experiences and build on areas that need improvement. 

Kindness   Compassion   Respect

Dear Mum-to-be, Let's Talk About Down's Syndrome

Last week, whilst speaking live on London's LBC Radio, presenter Nick Ferrari asked me what advice I would give a pregnant Mum about screening and Down's syndrome. I pondered for a couple of days, then wrote this letter.

This post first appeared as an article on the Huffington Post.

Dear Mum-to-be, Let's Talk about Down's Syndrome




Dear Mum-to-be, let's talk about Down's syndrome 

I once stood in your shoes.

Pregnant with a much-wanted baby, and wanting the very best for him or her.  
"We don't mind what sex we're having, as long as they are healthy," we all say, without too much thought about the foundations that phrase is built on. 
You take your supplements and you stay away from alcohol and cigarette smoke. You rest as much as you can. You mull over every detail of the birth plan. And in your mind's eye your newborn baby is sketched; beautiful and bouncing and perfect in every way. They complete your family unit, they bring everyone together. You know you will laugh and cry, worry and burst with pride. You know you will be exhausted, but that they will make you a better person, and it will all be worth it.

But there is one phrase that makes you uneasy, a phrase that was mentioned when you booked in with your midwife, that is written in every pregnancy book that adorns your shelves, and it's currently splashed across every media outlet in the land - Down's syndrome
You don't know much about Down's syndrome. But you think you know enough, just as I did. It won't happen to your baby of course. But you'd like 'peace of mind anyway'. And now there's a new test...