Down's: One Mum's Thoughts on a Word that has the Power to Divide

Meet Nathan Bessell, accomplished actor who has Down's syndrome, star of play written for him called Up Down Boy.

If you haven't seen it, you should. 

It was a turning point in my understanding, and in all 
honesty, my acceptance of Down's syndrome in my life. It is honest, brutally so. It addresses the deepest fears we have as parents and celebrates the most wonderful, unique qualities of Nathan's character Matty.

How does it achieve such a life-changing level of insight? 
Because it was written by Nathan's mother, Sue Shields.

I met Sue briefly after watching the play, a quietly proud woman, perhaps shy, perhaps wary of my 'newer Mum on the journey' enthusiasm. But since that time last year we have been in touch, via email. Not often, but at the most needed of times I think we are there for each other. 

In Sue I see a woman who have paved the way 
She pioneered, lived and learnt, often the hard way. I admire her greatly, she has so very much to impart to we novices. Those of us who, despite having our challenges and worries, and who see the ways in which we want to improve the world for our children, have so much more support and acceptance around us than the days when her midwife told her that Nathan had Down's syndrome because she 'had eaten mushrooms during pregnancy'.

I would love to share with you a poem that Sue sent me a couple of weeks ago. It is her opinion of how things have changed, and a call for perspective. To see the bigger picture, for all parents to pull together, regardless of the generation our loved one belongs to...


I admit to getting very rattled the other day when the story first broke about Natty modeling for Sainsbury's, and I was amazed to see how angry a lot of people seemed to be about the use of the word Down's in the Daily Mail article. [re 'Down's girl']

Now rightly or wrongly this word does not upset me at all, maybe it's because I'm from the era when the word 'Mongol' was in full flow, not to mention the 'R word', and yes, I do find both of these words incredibly offensive. 

But I see that we have come so far now, and I can't see that we will ever be completely free of discrimination or prejudice in this World - in a perfect World yes, but I also believe were it a perfect World then none of us would be here to see it!  

I thought it would have been better to be sharing in your family's happiness, celebrating the step forward for inclusion, not getting so angry and upset over what to me is such an insignificant word."

Everyday of your precious childs life

In the eyes of some he's seen disabled

And some even believe he's got a label
Now I have searched but can't find this tag
Though I've seen the looks and heard the tongues that wag
He arrived like all - without instructions
And along life's highway, well to put it bluntly it's caused ructions
Pigeon-holed, all classed the same
With parents expected to toe the line and play the game
Professionals who think they know best
And a Mothers instincts put to the test

Of course I know exactly when all of this began
At conception he fell foul to Trisomy 21
Down Syndrome. Downs. D.S. - No matter what you say
Discrimination and ignorance are here to stay
Acceptance is important - on that you get no argument from me
But don't become blinkered, for the whole picture is what you need to see
At their own speed, will go each
And achievements are there and within reach

Happiness for our Son.That was our goal
Not to become stuck in a rut - an ever deepening hole
A life that is filled with light, laughter and love
To see beauty in everything from below and above
To find great joy in all that we do
And to know the true meaning of the words, when we say "I love you"
To have family and friends who give him love and respect
If those aren't on offer we press the button that says reject
So please don't become bogged down with needless stresses and strife
Make sure you enjoy everyday of your precious child's life...

Happy Birthday Prince George: A Right Royal Frugi Gift

It's a time for celebration!

Bonny Prince George is one!
Frugi have been given the Queens award for being thoroughly ethical and fabulous and making scrummy clothes and being lovely employers!

And we are part of a very lucky little bunch of folk to be sent a gift to mark these events!

(Shouldn't it be the other way round Frugi, shouldn't we be sending YOU a gift...?)

Although our girls are too big to shoehorn into the beautiful soft organic cotton limited edition T shirt, we eagerly and excitedly accepted it. It arrived in a beautiful box, wrapped in tissue and accompanied by a signed certificate proving it's rare authenticity. 

#TeamT21 Linky

It's Friday folks!

Time to dust off an old blog post you'd like to reach a few more readers, or show us a new shining nugget of your writing. 

For those of you who are new to linkys, they work by everyone linking a post via the 'click enter here' text at the bottom of this post and then visiting a couple of others on the list to leave a comment. It spreads the blog love, but also commenting, like it or loathe it, enhances your own blog's searchability.

Of course the added bonus is that it will reach a new audience too, and it could be just that one new reader who will be helped and inspired by your words.

My favourite posts from last week's #TeamT21 linky were The Futures Rosie Little Miss Swiss, The Diary of a Not So Ordinary Boy What Teachers Need to Know and Mardra Sikora's #NeverAlone and a Down Syndrome Diagnosis  

What have your favourite posts of the week been? Feel free to link them below too.

A Word to Midwives on Antenatal Screening Programmes in Journal

Screen test - antenatal screening for Down's syndrome

by Hayley Goleniowska, author of Downs Side Up

This week my article for Midwives journal is published: Issue 4 :: 2014 

It needed to be cut, there was much more to say, but a word count prevailed, still an article on this topic in a medical journal for Midwives is a massive step forward. Emails from midwives have already begun to arrive. There is so much amazing practice around, but also so many sorry tales of lack of support at the time of screening.

Before Natalia was born, I unquestioningly believed, as do most prospective parents, that the recommended antenatal tests were for our peace of mind. I naively spouted that we didn’t mind what the sex of the baby was, 'as long as it was healthy'. I refused amniocentesis after an inconclusive nuchal fold scan, because of the 'risk of miscarriage to a healthy baby'.

Looking back at that previous version of myself fills me with shame because of my deep-rooted belief that a baby with a disability is somehow worth less than a healthy one. But I also see that my prejudice and fear of Down’s syndrome was a product of the way society, and some within the medical profession, view the condition.

Come and Join the Carnival: Community Inclusion.

It was one of those afternoons that dripped into early evening, dusk and beyond, where everything came together to create a perfect moment in time that shall be hard to forget. The kind of lived snapshot that could not be recreated, that could not be entirely planned for, for the magic ingredient came from the cocktail of those present.

Natty ready for World Cup carnival

The weather was warm and bright, breeze-filled trees cast a dappled border to our scene. The kind of day where you feel glad to be alive, energetic, positive, more sociable that usual. We met together and waited excitedly, chatting and priming our cameras, eagerly glancing across the grass, waiting for the gate to swing open and our samba playing carnival kings and queens to come dancing out.

A sun of papier mâché led the way as costumes and colours burst across the green, drums and dancing, flags held high. Painted faces beamed with pride, each child equal, each one vital and important, playing their part in the community scene. There were flowers and fruits, teams of World Cup, animals wild and free. From tiny to tall, big and small the procession wound its way through a crowd with hearts bursting forth. Every detail was thought out, even wheels were pimped to the max, staff and onlookers couldn't help their smiles, couldn't help but celebrate the wonder of Childhood, the innocent perfection of all children.

Then a concert. In breeze-filled shade each class performed to their families, their community, their peers. The audience sat or stood, passing babies for snuggles, a joke, an exclamation of wonder or two. And in that moment we all knew how lucky we were, we all appreciated just how special this moment was.

The hours that followed were filled with an easy flow of stalls and games, a fete with a difference, proper grub and a sneeky mojito or Brazialian lager. Older children sold their loom band wares and our Mia was no exception. Apples were bobbed and home-grown plants were sold. It was the kind of back-in-time village event that is so rarely enjoyed. Natty mingled with friends as they shared an authentic burger. We were still on red alert as ever at public events, but Natty stayed close, for once giving no cause for concern by darting silent and swift between the legs of a packed crowd. For once I didn't urge, 'Where's Natty', for once my heart beat at a constant pace. For the first time she was as engrossed in the events as we.

Then the finale, the icing on the cake, the boat race that had had us all planning and crafting ahead of time. Some for weeks it would seem, others the day before and at least one admitted to minutes prior to the race. Yes, after much anticipation the meat trays and empty drinks bottles beautifully hand-crafted vessels were launched down the stream. Teachers in wellies waited at the finish line, ankle deep in brook to catch the precious contenders. The crowd gathered, on bridge and bank. The excitement became too much and children cast aside their shoes and socks and waded in, waiting, waiting, wondering if their work would make it through the reeds.

As each boat passed under the bridge, a cheer, a universal delight in the fact they had fullfilled their purpose. 10s streamed through. More and more children and parents waded in to retrieve them. Natty and I waited for sight of her shuttle-inspired creation. Daddy and Mia stood guard atop the wee bridge. But where had it gone? Was it stuck nose-deep in the river bed?

'Where's my boat? Where's my boat?' we danced and chanted, always a good excuse for learning a nice sentence by heart...

Then finally that signal from Daddy DSU, 'Ship ahoy!', all signed of course.

The excitement overtook me, shoes and socks were hurriedly shed and jeans were rolled uncomfortably high. Others helped, egged us on and in we went, 'Quick Natty, quick!' I held her firm.

We got there a moment too late, the boat aloft, safe and dry, saved by another's hands.
So.... I sneaked it behind my back and offered it to one upstream to relaunch a few metres in.

'Look Natty, look. Here comes your boat!'

This time she watched and held her hands open, but the boat was taken downstream to our right. Saved again, but not by its creator. Drat and darn!

Third time lucky... and this time she caught her precious handiwork fair and square.

And the smile will remain with us forever.

Or our highy acclaimed little book I Love You Natty.

Link up for #TeamT21

Another week has flown by and it's time to link up your posts old and/or new for our weekly #TeamT21 blog celebration below. 

(Simply follow the instructions below after 'clicking to enter'. Put all the code of your blog post including the http:// part or it won't work.)

Alice Hassell has created an incredible badge for the team (left). She's working on adding some code so we can all add it to our blogs if we wish.

I've really enjoyed reading posts by familiar friends and newcomers  alike, and it's been a wonderful experience to feel part of a very close-knit community. If you haven't had time to read around, why not visit these three gems from last week:

Paul Critchlow who writes Orange Juice Flavour Sky gave us a wise post about time flying by and savouring the moments to be celebrated in life in Who Knows Where the Time Goes, Mardra at reminds us that our children really are The Very Least of our Worries in life, and Sunshine and the Berry gives a beautiful and inspirational account of breastfeeding despite the odds in Milo's Feeding Journey.

Now it's over to you!

Dad's Sports Day Disaster!

It really wasn't meant to end this way

It began with pride and smiles
Parent chats, catching up, tall stories were told

Together we clapped and cheered as our little ones ran, skipped, Hopped, tumbled, stumbled, fell, recovered and hurtled the finish line 

Some held hands
Helped each other in spirit
Congratulated and competed

Cheers and laughter
Tears too
Pride at Natty, one of the gang, last over the line but wearing the Biggest smile 

She aimed precisiely at the targets
Threw hoops over a pole
Jumped and ran and skipped her little heart out

Some parents joked of their competitive streaks that flared
Others recalled humiliation and embarrassment
Memories of never being picked

Yet all together now we stood on that village green
Inclusion at its best

I graciously ducked out of the mum's race
Wrong footwear was my excuse!

Not a single elbow or trip
Could be detected to fell an adversary this year
All good clean fun

Now the dads
'Go on daddy'
'Yes, do' I urged.

A simple course, designed to calm their verve
Don a skirt, a netball top, then rouge the lips
Return to base and tag next man

Our entrant was off, then suddenly slowed, one foot in the floral elastic.
Too busy giggling through the viewfinder to see
Oblivious to his not insignificant injury
I laughed off his pleas 'I've hurt my leg'
'To A&E I must go'

Back home the swelling clear
A call
A warning
Deep vein thrombosis, not a funny risk
So off we went
Crutches, ice, elevated pillows
Tea and sympathy for being black and blue

A torn calf muscle
Not such a funny souvenir
Of one of the most important days
Of Natty's school year

You might also like to read Sports Day Sunshine and follow Natty's successes in all the events she took part in last year. 

Natty, who has Down's syndrome, in Sainsbury's back to school campaign

Natty and friends in new Back to School campaign

As I sat in my kitchen last Monday afternoon plying a journalist and two photographers with cream teas while they jigsawed their pieces together to meet the Telegraph deadline, I realised with mixed emotions, that the world still finds a little girl with Down's syndrome appearing in a major advertising campaign news.

Mixed emotions, because we wouldn't shout about how exciting it is that a company are featuring children of different ethnic backgrounds would we? I actually said as much to the journalist that broke the story in the Mail earlier in the week. Natty has been modelling for three years and there have been other pioneering campaigns such as Seb White in M and S, and a little girl with cerebral palsy in Boden. Surely we've broken down the barriers already?

On the other hand, Sainsbury's is the first large retailer to feature a Back To School campaign which is so inclusive. The very campaign that is targeted directly at all children. So YES, it is a big deal that all children can see themselves represented in it, whatever their abilities.

So, the Daily Mail, Sky News, the Telegraph, Now Magazine and many more media outlets around the world such as Italy's Mondo and Australia's Syndney Times, have spread the word that we are all more alike than unalike this week, that Natty is just a little girl like any other, not a set of symptoms or a diagnosis nor predictions for her future. Even Loose Women picked up an article and discussed #adinclusion on air. Sometimes they got their terminology wrong, but the message was powerful: Down's syndrome is not to be feared. You can watch the Loose Women clip here:


Thank you Britmums for holding the fort for me, and writing a little summary while I was too busy and strung out on adrenaline to touch my blog. It really felt as if I had a safety net of support around me at a time when I felt vulnerable. 

My inbox has been full of heartfelt and emotional messages from new parents, for actually a story like this is a shining beacon of hope to many. If ever you think that your campaigning is being sent out  into a void (as I have on occasion) it is encouraging to know that what you are doing is making a difference. And when the Telegraph piece was published, a piece of journalism based on truth and integrity, these are the kinds of messages I received.

"You taught me to genuinely believe that actually all is ok! 
Life is very different, but that doesn't have to mean worse. You have inspired me to know that in the blackest, most terrible of times, 
the future can be amazing. "

"But I just wanted to say, thank you, thank you, thank you! 
You and Natty as well as Mia and Bob of course have helped me through the darkest days and when I've taken to the silly internet, you've been that constant light that has shone through everything else. 
I don't know you but you've helped more than you'll ever, ever know.  Love and deepest respect always."

Then, the next morning, a little tweet: 

'Hi Hayley, this it Tom from ITV, 
could we chat about you and Natty coming on the Lorraine show.'

BBC Breakfast wrote a similar heart-stopping request, but Lorraine is more chatty, approachable and reaches new mums at 8.30am when the rest of us are on the school run. So, after some deliberation, we went with the lorraine Show.

Was I up to the job? Had I bitten off more than I could chew? Would Natty behave on live TV? Would we get a chance to get a deeper message across? Did I have the energy for another trip to London post BritMums Live? 

But that is a whole other story. A whole other story that will have a post all to itself...

You can read the Telegraph article 'There are No Limits to What Natty Can Achieve' here.

Link up for #TeamT21

It's the second ever TeamT21 blog linky, a new collaborative drive to help us all support and showcase one another's blogs. 

We can visit, read, comment and share one another's thoughts, thus reaching a wider audience of those who might need or appreciate them.

Thank you to everyone who linked up last week, I really enjoyed reading around and visiting friends old and new.

Among the amazing posts, Alice Hassell gave us 5 invaluable travel tips for taking your child abroad on her blog My life My Son My Way. We shared the joy and pride of Mum Aedin in her kindergarten graduation over at Minis and Mum, and nodded knowingly and sympathetically at the things people say in this piece from Nancy over at Diary of a not So Ordinary Boy.

Do link up one or more posts in this week's line-up. They can be old or new, a concern or a celebration, a tip or trick, a poem or heartfelt dream and if you have a nanosecond of spare time go and visit someone else's blog. That's how we spread and share the love!

Thank you all.

H x