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 She knew nothing about the condition, aside from outdated assumptions and stereotypes, and was full of unnecessary fear of what the future had in store for her family.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

Reader's Story - Caroline Playle

This truthful story of shock, mourning and the subsequent love and pride was sent in from Caroline Playle, Mum of Seb.

It was a small, musty room where the news was delivered to us that Seb had Down’s Syndrome. Five days after his birth, the fumbling paediatrician, ironically called Dr Downie, left the room to allow us some time to 'take it all in'. I distinctly remember how the room had no windows. He had us captive. 

He returned suspiciously swiftly with a handful of leaflets and I remember so vividly the hot flush in my cheeks, the palpitations in my chest and the knots in the pit of my stomach as I caught a glimpse of the cover photos. No way. This is not happening to me. To us. This is for someone else. 

I don’t know if it’s a mothers instinct, but after the barbaric labour I’d endured, the absence of a cry and the fact that Seb wasn’t given straight to me, I was waiting to be told that something was wrong. He didn’t look quite how I’d imagined, but then most newborns look a bit alien – don’t they? I kept staring at his fingers and counting them. They were so fat and blue and I couldn’t quite believe there were only five on each hand. The staff left us to it so I presumed we were out of the woods. I’m always a worrier.

24 hours later, after problems with feeding, a midwife told us she had concerns of a 'chromosomal abnormality' (whatever that was) and had asked for someone to come and see us urgently. 

A very long and uncomfortable two hours later the paediatrician arrived and, with very little eye contact, did some routine examinations. He mainly talked in riddles, but he said something about possible heart problems and muscle tone. It didn’t sound too serious. It certainly sounded redeemable. The nurse took some blood from Seb’s teeny tiny hand with what looked by comparison, like an enormous needle and organised heart and blood pressure tests. 

That evening, all alone, I decided to read through Seb’s precious little red book. 'Sandal gap', 'slanting eyes', 'mild hypotonia', ‘concerns of chromosomal abnormality’. Still feeling brave and looking for peace of mind, I decided to google it…….. 

Down's Syndrome. 

Down's Syndrome. 

Down’s Syndrome.

DOWN'S SYNDROME?!!!!!

OH. MY. GOD. 

So, back to the musty room with no windows, the confirmed results of the blood test, Dr Downie and the pudding bowl haircuts. That was the day that someone drew a thick, black, heavy, vertical line right through the middle of my life. The day my heart was so heavy I could practically feel its weight in my shoe. 

We gathered our things together, including our tiny baby with his shiny new label, and nervously knocked over our cups of water. We burst out laughing. Nothing about it was funny though. 

We walked to the car. A stranger peered into the car seat and congratulated us. I forced a feeble, fake smile whilst feeling absolutely gripped with fear and dizziness. She had no idea. It should have been the happiest day of my life. It was the worst. We drove home and I remember thinking that the streets somehow looked different. Everything seemed calm and people were carrying on as normal. 

The house was full to bursting with messages of congratulations, presents, flowers, balloons, cards, gorgeous baby clothes and the nursery that had been put together with excitement just weeks before. Everything was perfect, just how I had wanted it, except for one thing…

Caroline and Seb in the early days

In a blur and on a mission, we frantically threw ourselves into research mode reading books and websites, and getting in touch with speech therapists, physiotherapists and other experts. I would wake up and for a split second it wasn’t real. There were tears, so many tears. Hysterical tears. Every single time I looked at my new baby I saw Down’s Syndrome. I felt a huge depth of love for him. He seemed exceptionally vulnerable and I felt guilty for feeling so cheated. It was a very confusing time.

Bit by bit, day by day, the hurt started to lift as I grieved for the baby I thought I was having and I fell in love with our Seb. He was a baby first and foremost, not just a syndrome. He cried, he smiled, he rolled over, he sat, he crawled. He learnt to walk, he learnt to eat. In fact he did everything you would expect a baby to do, just at his own pace.

Last month was his 3rd birthday and the only aching in my heart was pride which was literally bursting out. Every single day he makes me laugh. Every single day he makes me mad. He is charming, witty and bright and he knows how to have a meltdown like the rest of them. He is starting to speak, he’s learnt 100s of makaton signs (think Mr Tumble), he’s off to mainstream nursery in September and he’s even starting to learn to read. His favourite word is ‘cake’ and he is obsessed with diggers. He hates having his hair washed, he loves ice cream and he calls his brother ‘babydom’. He doesn’t have a pudding bowl haircut and his little face is full of magic and mischief. 

In truth, I wouldn’t change a single hair on his body, let alone a chromosome. He is honestly the best thing that has ever happened to me and he has taught me so much in 3 short years. 

96-98% of positive screenings during pregnancy end in termination. I would never judge anyone for taking this decision and I understand the reasons. This is exactly why my plight is so heartfelt. Before Seb, I was ignorant too. I had never known anyone with Down’s Syndrome. I was guilty of being in the ‘they’re so loving’ brigade and I have a pretty good idea how this story may have ended, or never really have started, had I known about that extra chromosome when I was pregnant. I feel so ashamed of that. Seb has brought joy to so many people in such a small amount of time and he contributes far more to me than I ever could give to him. He deserves to be here. I just wish that in those initial hours, days and months of his life I had not been so gripped with fear of the unknown and had just realised, as I do now, that he is a child (person) with likes and dislikes, just like anyone else. He just happens to have one extra chromosome.

Pioneers for Children with Down's Syndrome

Changing the face of beauty - the models with Down's syndrome

When Natty was born we were all struck by her petite fragility. Her features seemed so prefectly proportioned for a baby. That feeling that she would 'grow into' her ears, that I had noticed when I looked at Mia as an infant, wasn't there. She resembled a perfect little doll.

I began to wonder if anyone else could see that she was different. Was the fact that she had an extra chromosome evident from afar? It didn't look obvious to us, until we looked around and realised that other children had a certain look that was not like Natty's.

Never lose an opportunity of seeing anything that is beautiful, 

for beauty is God's handwriting -- 

a wayside sacrament.
Welcome it in every fair face, in every fair sky, in every flower, 

and thank God for it as a cup of blessing.

- Ralph Waldo Emerson

I was struck by how equally beautiful all children were, just in different ways. Strangers obviously thought the same about Natty, because they used to cross the street to tell us. Maybe there was an element of wanting a closer look at the little baby in the sling, but I always stopped to chat. To each and every one of them. (This is why I am late for everything as people who know me will vouch). I never once got annoyed at people for staring, I drew them in and left them smiling. And they all went home with a slightly different perception of Down's Syndrome.

This is where 'changing perceptions gently from within hearts' all began.

When Natty was about 12 months old, I recall walking past a shop window with her and seeing a small poster in a shop window with a happy family group advertising snuggly fleeces. The girl in the photo had Down's Syndrome. She was about 8 years old and gorgeous. My heart skipped a beat. Never before had I seen a child like Natty represented in advertising. I was so overjoyed, so inspired and so happy to see this young lady treated like any other, that I skipped into the shop and gushed enthusiastically at the staff working there. They were lovely, but probably didn't really understand just how much this symbol of inclusion had meant to me.  The shop was Weird Fish. The year 2008.

Weird Fish were among the first to employ inclusive advertising

I guess I filed that memory away, in the 'How I am Going to Change the World' section of my brain.

Years passed and Natty started school. I had time on my hands to mull over our experiences of parenthood, disability, heart surgery, shock, love, life and our family unit of 4. The blog Downs Side Up was born; a way of sharing, inspiring, and releasing.  This is an excerpt from my very first post in November 2011:

"This is a feeling of wanting to get something much more important, very right from the onset.  Of wanting to create something that will lift spirits, give support, bring people together, raise a smile and encourage. Yet all the while providing practical tips and real solutions for the everyday lives of parents and educators who have a child with Down's Syndrome in their lives."

The blog became the hub of Downs Side Up and spokes began to eminate from its core. The memory of that model in the poster returned and I began researching the subject.

I saw a model in the US working for Nordstrom and Target. (And apparently Next had done the same in the UK, but this passed me by sadly. )

Harvey in the Next campaign

I found a modelling agency in Dublin that specialised in models with Down's Syndrome called I Am Able 2 Model. Their books were full but they were supportive and encouraged me to just write around to companies and agencies asking them if they would like to include Natty in their campaigns. I did this, many of my emails were ignored, some received sweet replies saying that Natty was gorgeous but they couldn't use her and then... bingo... Frugi said yes. 

Shortly afterwards Jojo Maman Bebe, everyone's favourite quality brand, famed for their funky stripes, agreed too. They are inclusive employers and were now keen to be inclusive with their models too. 

Natty and I excitedly hopped on a train to London for the shoot. 6 hours later we arrived, tired but still full of energy, jumped in the waiting car and whizzed round to the venue where Natty immediately began singing Christmas carols (in June!), riding the willow reindeer and shouting 'Shhhhh! Santa's coming!' to the crew. We were in stitches, and what a diva after such a journey. 

The Jojo Maman Bebe outtakes

45 minutes later we were back in the car heading for the station for our return journey home. We arrived safe and sound, exhausted but having spent a quality day together, full of puzzles and films and books and colouring and music. For Natty, the modelling was just a tiny bit of fun in the middle of the day, unaware of the importance of the barrier-busting occasion.

Suddenly we were sucked into a media whirlwind with TV, radio and magazine articles galore.

Natty, model with Down's syndrome 

At the same time another amazing, tireless and determined Mum, Caroline Playle was doing the same thing. Our children both featured in the Jojo Maman Bebe campaigns. Now the world really had to sit up and listen. And listen they did, because her son Seb White has been snapped up by none other than Marks and Spencer for their Christmas campaign! Again the world of media was whipped into a frenzy and everyone was talking about how scrumptious he looked with his reindeer antlers. He was even taken on for their Xmas TV ad!

Now the floodgates are open. Other companies are doing the same. Other parents are confident enough to push their children with disabilities forward for modelling. What I really want to see now is a wheelchair user in a campaign, or a teenager with Down's Syndrome, adults with learning disabilities. 

But we will get there. One step at a time.

I am very proud to have been a mover and a shaker in this shift in society and I thank all the companies willing to stand up and be different. 

This got me thinking about the pioneering parents that have gone before us, those who bravely took their children home from hospital when that was not the 'done thing', those that fought for our children to be firstly educated at all, and then included in mainstream schools if that was what was right for their needs. 

I thank the professionals who research all the latest learning techniques for our children. I thank the doctors who pioneered the heart surgery that saved Natty's life. I thank these parents and professionals from the bottom of my family's collective heart. 

And to those parents of the future, I promise to carry on fighting, along with an army of other passionate Mums, for change, so that your children get an even fairer bite of the cherry of life.

Hayley, Natty's Mum
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