Learning Disability Ambassador Lloyd Page Reviews I Love You Natty Book

Our dear friend Lloyd Page wrote this glowing review of our book I Love You Natty which first appeared on Independent Consultant Nurse Steve Hardy's blog here. Steve supported Lloyd to write this fabulous piece.

Lloyd Page and his copy of our book I love You Natty

Lloyd works for Mencap, write books, trains medics, tell lots of jokes and has a learning disability. He is one of a handful of people who checked in on us daily during lockdown to see how we were doing. 

Despite being hospitalised with Covid-19 himself, Lloyd is always thinking of others. This is what he thinks of our book:

What to Say When a Baby is Born with Down's Syndrome

 

So, you hear the news that someone in your family, a close friend or an acquaintance has given birth to their baby. Wonderful news!  

But within seconds you are told that the baby has Down's syndrome.  

"Oh.... "

Baby Natty 

There follows a mixture of disbelief, shock, stunned silence, anger, hurt, disappointment, perhaps a feeling that a sixth sense told you so or a desire to 'fix things'. Maybe perhaps if you are young you just don't understand and those of us who are older in years might have a clear visual image of what we expect it to mean based on stereotypes. 

However, if you already know and love someone with Down's syndrome, you will have a sense that this is not the end of the world, that you will gently guide and support this family.

So what do you say and do?
Before Natty was born I had never been in this position in my life... But I can say with equal measures of honesty that we probably experienced the full gamut of reactions from those within our social circle in the weeks immediately following Natty's arrival. This is what worked for us...

Everyone is different of course, and this is never truer than in matters of pregnancy and birth, but whatever thoughts and emotions you are experiencing as onlookers, the parents will have already gone through them 100 fold.  Yes, all of those feelings.

Try our conversation starter cards from Fink

1)  Don't be afraid to say something  
This is where Natty's entrance into the world really sorted the wheat from the chaff amongst friends.  Longstanding friends didn't know what to say and soon disappeared, awkward and embarrassed.  Those we'd got to meet relatively recently stepped up to the mark, supported, helped, offered childcare and cooked meals during our never-ending trips to the hospital.  Family drove through the night to meet her, also in shock, but there for us all.

The Wise and Respected Godmother says that when people are in crisis you must never be afraid to talk to them.  If your words are meant with kindness, even if you don't quite say the right thing, you can't make them feel any worse than they do already.  The only way is up and knowing that you care will help.

A shaky start for Natty in the Special Care Baby Unit

2)  Congratulate the family on the arrival of a beautiful new person in the world!
My husband popped the cork on the bottle of bubbly we had bought in advance of our baby's arrival.  We toasted our daughter who lay in an incubator in intensive care that night, even though that was the last thing we really felt like doing.

Send a card of congratulations (not condolences please!) and a small gift for the baby to have near her if she is in hospital, buy a pack of toiletries or wholesome snacks for parents spending many hours in hospital or purchase a pretty coolbox for mums transporting breast milk to and from hospital twice a day.

Ask to see the baby or a photograph, ask if she has a name yet, how much she weighs, how the birth went, in fact anything you would ordinarily ask any new parent.

Our neighbours bought us a gift of a beautiful rose to plant in the garden, called 'Congratulations'.  It has survived house moves and harsh Winters and still makes me pause for thought whenever it blooms.

3)  Be realistic
When people acknowledged the challenges ahead of us and our early feelings of desperation, it made us take their words so much more seriously.  Over-optimism can be very insincere after all.  Understand that the parents are possibly grieving the loss of the healthy baby they were expecting.

The midwife who said "None of us want this for our children, but she is beautiful, and you will cope." was one I came to trust the most.

Another who countered my "I don't want to love her because I am afraid she's going to die," with "That baby needs your love my dear, whether she lives or dies.  So get to that hospital and give it to her."  was so very wise and true.

"It will be hard but I will help when I can."  
"She is looking a little stronger/better than when I saw her last."  
"I can't imagine how you feel...."  all delivered with hugs from friends.

But be prepared for any advice you give to be ignored.  If I had a pound for every time someone gave me the number of the lady who runs the local Down's Syndrome Support Group I could have paid for a lifetime of private Speech and Language Therapy for Natty.  

In fact it took me 2 years to contact her (she is a dear friend now), but we still remain rather a private family (believe it or not!) and do not join in many organised group activities. Each family will work at their own pace.

And I didn't once ever contact any friends of friends whose phone numbers were passed my way simply because their children had the same number of chromosomes as mine, prefering instead to make friendships with those who would have been in my life regardless of having a child with Down's syndrome or not.

Our book for children I Love You Natty

4)  Avoid outdated language and clichés
Just say the baby 'has' Down's syndrome and avoid outdated terms which shall remain unmentioned here. 

She is a baby first and foremost.  She will have the features and traits of her family before those of any other child with Down's syndrome.  She will follow their path, learn their traditions and values, and be dressed the way they want her to.

She is in the here and now.  Don't ask endless questions about ante-natal testing or refer to the idea that perhaps she shouldn't have been born. (You might also want to avoid mentioning the mother's age or the state of her eggs!  One of the loveliest DS Mums I know was 18 when her little girl was born...)  

I actually don't mind people asking "Did you have testing?"  It's the "Didn't you have testing then?" that is hard to swallow...the subtext being that if we had, she wouldn't be here of course.

And as for being musical and loving... just come round and listen to Natty sing along to Little mix at the top of her lung's capacity these days, you might just change your mind!

For unbiased advice that covers all bases, you can't do better than read the free Start It Right leaflets published by the Down's Syndrome Association.


PS)   This is not number 5) because it is not advice
Perhaps it's just the way I am, but  reverse psychology worked pretty well on me.  I can clearly remember 2 pieces of shockingly negative input from 2 separate individuals.  So shocking and so negative that they made me sit up and think, ''Right, you'll see!"...

The first was from the kind of jovial midwife that wafts through your space shortly after the news has been given to you about your baby's diagnosis.  When asked by my doula what we should do about the breast milk (meaning - how to get it into the baby) she replied "Oh, don't worry about that, it'll soon dry up after the shock she's had today."

Natty's first taste of breastmilk whilst in Neo-natal Intensive Care

So breastfeed I did, the same way I fed her sister.
It took 3 months before the naso-gastric tubes came out and what felt like a 24/7 expressing regime, but we mastered it together, Natty and I.

The second was from an acquaintance who (perhaps speaking from personal experience) offered, "You don't have to keep her you know. You can just say goodbye, nice knowing you..."

I might have been waivering on whether I could cope or not, but this made me realise that I wanted to give it my best shot and that regardless of my shock, I didn't want to watch someone else become my baby's mother.

I promised my baby at that moment to do the very best I could for her at all times. Sometimes it isn't perfect, but it is always my best. 

The birth of any of your children should not be by far and away the most challenging day of your life.  
But for so many of us it is.  I wish with all my heart I could go back in time and re-live that day, knowing what I know now. I can't of course, all I can do now is share our story to make things better for others, to buy them precious bonding time with their newborn babies. 

Simply the right words, actions and attitudes has the power to set new families on the right path.  

How language shapes our thinking: Hayley speaking at TedxTruro. Photo @VerityWestcott

Vote here

Advice For Medical Staff Giving the Postnatal Diagnosis
The way in which the diagnosis of Down's syndrome is communicated is often done in a dissatisfactory manner.

The firm diagnosis of Down's syndrome on phenotypic grounds is usually possible immediately after delivery.  It is essential to inform the parents, at least of your suspicions, as soon as possible after delivery.

The Delivery Suite diagnosis of Down's syndrome should follow this plan:

1. As soon as the baby is delivered congratulate the parents on the birth of their child.
2. Advise them whether the baby is healthy or not and explain any immediate resuscitative procedures you are performing.
3. As soon as third stage is complete and the baby is stabilised, ensure that you can have some time alone with both parents and the baby. Many parents will already have sensed an apprehensive atmosphere in these few minutes. A midwife who has been involved with the delivery may be an invaluable support.
4. State your clinical diagnosis and, if necessary, your degree of certainty. An opening statement could be: "She looks very healthy but I have some news for you that you might not have been expecting. Your baby has Down's syndrome." You should be touching the baby as you say this and using her name, indicating your acceptance of the child. No new parent wants their doctor to treat their baby with repugnance.
5. After dealing with any immediate denial statements from the parents, it is necessary to evaluate their understanding of the diagnosis ("What do you understand by the term Down's syndrome?"). It may become evident that they have little knowledge about the condition or they are weighed down with myths and misunderstandings. These should be corrected carefully.
6. It is impractical to fully educate the parents of a baby with Down's syndrome immediately after delivery. Enough information should be given so as to answer their immediate questions and support them until later in the day when more detailed discussions can take place. Immediate information should include a synopsis of the aetiology of the syndrome, a defusing of either parent "blaming" the other, and a description of investigations and procedures which are necessary to fully evaluate the child's health.
7. A complete discussion of the diagnosis should take place once the parents are at least partially recovered from the immediate stress of delivery, usually within twenty four hours. By this time there will be a barrage of questions which will need to be answered accurately and adequately. Every effort should be made to have both parents at this meeting. Again the child should be present as the focus of the discussions and should be held by the parents. It is still too early to overload the parents with every minute fact so there is a need to be sensitive to their particular rate of uptake of these new and complex concepts.
8. Do not try to be to predictive. It is nonsense to try to foresee the future for any child with accuracy. Perpetuating myths such as "at least he'll always be loving and enjoy music" is inexcusable. A "broad brush" picture should be painted which recognises every child's capacity to develop individually.
9. Family and friends can be a source of great support but they may also need information and education. The Down's Syndrome Association offers ongoing support to parents of babies with Down's syndrome, including support from parent who have had a child with Down's syndrome.
10. It may be helpful for relations to bring in photos of the parents as neonates. This allows the parents to compare the baby's facial characteristics with their own and see that it is their baby, not a "Down's baby".
11. Most doctors understand the parents' need to have time alone but also to feel confident in approaching the doctor at any time for more information. An open-door policy is essential. When a case of Down's syndrome is delivered, a child is born. This simple fact is so often overlooked in the storm of emotional upheaval that the new mother and father are rarely congratulated on becoming parents. One mother was even sent an "In Sympathy" card the day after she delivered a healthy baby who had Down's syndrome . Less than thirty years ago some Australian doctors used to advise their patients to place their Down's syndrome babies in institutions and tell their relations they had been stillborn. Although this sort of approach no longer exists, very occasionally the parents of a newborn with Down's syndrome will decide that, for whatever reason, they are unable to accept the child. In this situation the options include foster care or adoption and it is obviously not a decision to be taken lightly. The doctor's role is again that of an informed counsellor, not a judge.
    
    The process of coming to terms with having given birth to a child with Down's syndrome has been likened to the well-known grief reaction which occurs after the death of a child. Stages such as denial, anger, acceptance, for example, are recognisable and parents are said to be grieving for the loss of their expected "perfect" child. While this view has some small merit, it fails to address the long term and varying nature of the readjustment process in the case of the family of a child with Down's syndrome. After all, the child has not died.

Bless Her Heart: Heart Surgery and Beyond

Reposted from 2013

This morning Natty had the first check-up with her cardiac consultant in an incredible 2 years.

That she felt confident enough to leave a gap of 2 years since last covering Natty's chest in jelly and staring silently and seriously at her heart's image beating on a screen whilst Natty initially wriggled then slowly settled to watch CBeebies on a TV on the ceiling, whilst I stroke her forehead as she lay on my chest, speaks volumes. 

But why did I feel so nervous last night? Why couldn't I sleep?

Model Natty Strikes a Pose: Frugi Hannah Reversible Dress

You know that thing when you're a top fashion model, working toward inclusive advertising so that all your peers can see themselves represented in the media. Yes, that. 

It's hard work isn't it! All smiles and poses and fun, I can't just switch that on at the drop of a bright cotton sun hat you know.

It's even worse when your Mum is really busy and forgets that she is supposed to have taken a photo of you in a gorgeous new dress that one of the companies you represent has sent you. She'd promised them a review by all accounts and this snazzy Frugi frock has been on her pile of things to do for days apparently. News to me of course *eyes roll to the sky*.

So what does she do on review post deadline day? She puts you in it and makes you pose for the camera. Just like that, no warning. Right after your breakfast and just before brushing your teeth. Most inconvenient I say! She really should organise herself better...

Striking a pose in Frugi reversible dress

To make matters worse she had the nerve to make me take it off straight away and put on my boring school uniform. I wanted to wear the pony pocket dress to show my friends.

I mean, I ask you! I wanted to keep it on all day! She really should stop horsing around (get it?).

Natty G x
(Words imagined by Mummy G)

p.s. There's also a blue one with an owl. Twit Twoo!


This gorgeous Hannah Reversible Dress is made from soft organic cotton, with popper fastenings at the back of the neck for easy dressing. One side of the dress has a sweet Frugi character applique and the reverse has a cute embroidered pocket, two dresses rolled into one! It retails at £32.

Frugi Hannah reversible dress also available in 'Owl'

Head over to fellow #FrugiFamily member Globalmouse Travels for their review of the Lulu Jumper Dress.

Chatty Natty Goes Live on Facebook

Never a social media platform to sit still, Facebook has launched a new-fangled way of interacting with our communities, and it's one that will benefit us all and bust a few myths about Down's syndrome.

Join us each evening for Facebook Live streaming

I was happily bumbling along my newsfeed the other day and stumbled across two different friends broadcasting via Facebook Live. Honest Mum Vicki Psarias was telling us about her celeb cooking adventures with Jamie Oliver, and Sarah Jackson, the Fermented Foodie was bouncing on her trampoline and chatting to all who were watching about getting healthy.

How to Spoil a Special Swimmer

Natty is one very special swimmer indeed.  She's also very good at surprises...

How to encourage a special swimmer

Since her naso-gastric tube was removed, she'd had her jabs and the all clear from our GP, Natty has been a little mermaid.  From splashing in the bath, to languishing under a shower, to sitting in the Caribbean Sea with her toes in the sand to taking swimming lessons, she just loves being in the water.

Natty Celebrates the Arrival of the SS16 Frugi Collection in her own Inimitable way

Do your children pinch your mobile phone and fill it with selfies and silly videos? 

No? 

Is that just my crew? 

Natty celebrates the Spring Summer 16 Frugi collection!

Well, last week Mia discovered the time lapse video button which made us all giggle heartily. The two partners in crime spent hours fast forwarding through their daily routines and recording it all for posterity.

Let's see Adults with Disabilities in Advertising?

The tide is shifting. More and more companies are following the lead of household names such as Marks and Spencer and Sainsbury's and including young models with disabilities in their marketing campaigns. Hoorah!

Seb fronts Marks and Spencer campaign

Natty joins Sainsbury's Back to School Campaign

This week our little Natty's face once more peeked from the pages of Frugi's catalogue, as she advertised a glorious yellow cotton cardigan. 

Sick with Nerves

This week I am catching a plane to fly North of the border. I hate flying. 

I'm going to a large and beautiful city.
But I'm a country bumpkin who will find this daunting.

I'm taking Natty with me.
Now there we have added a whole new list of dimensions to consider, not least the extra on-board bag of entertainment and spare clothes. 
*rushes off to pack the spare clothes in the on-board bag, just in case of travel sickness*

Natty trains student midwives and nurses

I've been asked to be a keynote speaker at the NHS Education Scotland student nurse and midwife conference or #NESLDAN16

This is where we can create real change and work with medical professionals to ensure equal care and support for all. It is a huge honour and I am determined to get it right.

But 2 BBC crews are coming to film my talk. The talk I haven't quite finished writing.  I'll be interviewed by a famous comedian who has a son with Down's syndrome.

How did life become this surreal?

As if things weren't scary enough, now I feel the pressure to really get this right. I'm aware that what I say could be cut down to one phrase, so every phrase must count.

A Photo for Sunday

My photo of the week comes from a snap of a monitor during a filming session for the BBC this week. 

Natty's face says it all...

Sunday photo from Natty

UK's Biggest Selling Glossy Feature Model Natty: Why it Matters

The media communicate to the masses what is acceptable, what is 'the norm'. The fact that the UK's most widely circulated glossy magazine has featured a child with a learning disability as an angel in their Christmas edition is very important news indeed

Natty features in Good Housekeeping Magazine, photos by @Katie Wilson 

All children love a cool outfit and who doesn't love sparkles and glitter, even if they did happen in August for Natty and I. 

It was an amazing day in London, we were spoit rotten, we met incredible women, but most of all, we were helping to bring Learning Disability into everyone's homes, into all areas of life. No longer should anyone be hidden away from view.

The Perfect Christmas Dress from Frugi

When a girl has a birthday on the horizon, and Christmas party season is just around the corner, she needs a frock that will take her from leaf-kicking in the park to supping squash with friends and on to showing off her latest dance moves when the celebrations really get started.

The perfect Christmas dress from Frugi

The Frugi AW15 Collection and Why First Impressions Matter

When Natty as born, I had images of greying knee-length socks teamed with threadbare kilts and Mickey Mouse T shirts in my head. I saw a 'national health' haircut and glasses to match in my mind's eye. It sounds ridiculous, but that is what flashed through my head.

Natty and sister Mia model some vintage Frugi

I was wrong. My stereotype was born of ignorance and fear, and very quickly Daddy Downs Side Up and I vowed that Natty would always have the very best hair cut, clothes and glasses that we could find and/or afford.

This may sound superficial. 
It is superficial. 
But first impressions count. 

And they count 50x more when you have a learning disability and the whole world forms an impression of you before you have walked into focus, or even opened your mouth. When the most people think they know what your personality is based on outdated and narrow stereotypes, then perhaps sometimes your 'look' can be the first flag that causes them to reassess their thinking.

This is exactly why I wanted to show the world that our children with Down's syndrome are beautiful, can model funky clothes which they adore wearing, and can lead the way in the world of fashion.

Natty puts her Isobel Frugi cardigan through its paces

Fabulous organic kids clothing company Frugi were the first to take Natty onto their books over 4 years ago and she is still featuring in their colourful catalogues (*Klaxon* Watch out for the SS16 edition). We are very proud to be a part of the #FrugiFamily and are huge fans of their durable, gorgeous, soft, washable, so-great-you-can-hand-them-down-time-after-time clothes.

So a huge thank you to them for wanting Natty to model their Isobel cardigan this season (RRP £30). This gorgeous knitted cardigan is made from organic cotton, making it super soft, warm and durable. With a sweet front pocket and contrasting button fastenings, great for wrapping up this season.

Also available in Navy

Leggings, swing tunics and cardigans are Natty's staple look as they compliment her shape perfectly. They skim over rounded tummies and adapt to shorter limbs. She's just grown out of a yellow favourite, so we were delighted that they sent us this soft cotton cover-up in Ladybird red to review. It definitely got a thumbs up from Natty.

Thank you Frugi!

Do go and visit the rest of the #FrugiFamily bloggers on this blog hop, stopping off chez the intrepid Globalmouse next, with her post Embracing the cold with Frugi's Autumn Winter Collection.

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.

Clever Captions Please!

Last month, Natty was invited to a very special party at the Lord Mayor of London's home. 

(Like you do!) 

Off she trotted, in fancy dress, a little ambassador for children with Learning Disabilities everywhere, and representing Mencap charity. You can read her exciting tale here in Little Red Riding Hood: A Hero with Down's Syndrome

The official photographs have just arrived, taken by Gerald Sharp Photography, London and I thought this one was simply begging to be linked up to Saturday Caption hosted by Mammasaurus. 

So, captions on a postcard in the comments box below please. 

Little Red Riding Hood: A hero with Down syndrome

ONCE UPON A TIME...

in a quiet clearing in a faraway wood, there lived a wise, brave and beautiful young lady named Natalia. Because of her fondness for dressing in a velvet cape of crimson rose, and a frock adorned with pictures of her favourite woodland friends, she became known by all who loved her as Little Red Riding Hood.

Little Red Riding Hood had fought valiantly to become strong, overcoming battles of health and development with a smile. And each day she worked as hard as she could to learn the skills she needed to go out into the big wide world by herself, and each day she drew others in with her humour and vivacious spirit, so that she could teach them all about her inclusive community, her determined family, her zest for life and her famous way of turning Big Bad Wolves into the gentlest of puppies.

Natty gets a very special invitation...

... from the Queen Lord Mayor of London. (We've explained her as 'like the Queen'.)

The Lord Mayor of London is hosting a fancy dress party for 200 children who have made a difference. I guess Natty is unaware of the exact difference she has made to others, either by being part of inclusive advertising as a model with Down's syndrome, or by being a protagonist in the ordinary story that is our family and parenting blog so that new and prospective parents can reassess their understanding of what Trisomy 21 really means in modern times.