Interview with Natty G and Mummy

On Friday night Natty was awarded her Local Hero Award for Child of Courage or Achievement of the Year. We are still, quite frankly, riding very high on the emotions of the night.

Here is the little interview clip Natty and I made a few days before the glitzy ceremony. She makes me howl with laughter as she sets out her showing off skills. Thank goodness they left out her answer to 'Tell us about Mummy?'
The little minx said I had a 'Smelly bottom'.

I can assure you that isn't true.


              

It was all very last minute and a bit short notice (as you can see by my appalling hair!) but I hope we managed to work our positive magic anyway.

H x

Silent Sunday

Britmums #snaphappymums theme:Vegetables

Natty manages her first full cob of corn without help!

Behind the Scenes at our Models Photoshoot

Here's what happened when we gathered a group of young models with Down's Syndrome together

Many of you know that Natty, our 6 year old daughter is one of the UK's first little models in the UK with Down's Syndrome.

Natty poses on the steps of the Normansfield Theatre

Exactly a year ago national press stories focussed on what was then ground-breaking stuff, a rarity, a surprise. Natty and Seb, who was taken on by M&S, featured in nearly every magazine and paper in the land.

Natty and Seb meet for the first time

I wrote a lot about our pioneers and others in the USA doing the same. And then I began wondering how many more children with disabilities working as models. Sadly I could find no child with any disability other than Down's Syndrome doing such work, a sign perhaps that our children are still viewed as cute.  We have a way to go on this path.

Thumbs up for #adinclusion

I figured if we could get all these children together for a photoshoot we could show the world how far we had come in a year, that the floodgates were now open, and in the same stroke we would encourage even more companies to follow suit. And what better way to celebrate the forthcoming World Downs Syndrome Day on 21st March, a day we will mark by wearing lots of mismatched socks.

Harvey, Natty and Thea show of the socks Penny Green bought them

A wonderful journalist called Kate Thompson offered to help with the challenge, and we were off, on an exciting mission. Everyone agreed to meet, coming from all over the country and Kate tried to find a studio to accomodate us. Then the lovely people at the Down's Syndrome Association offered to host us all, and allow us to take photos in the stunningly beautiful theatre that John Langdon Down had created for those he cared for to act in.

The Langdon Down family tree in the museum

It was a hugely emotional day, standing in the places that many had passed through, some in much less happy times than others, as Normansfield became an institution later on. One could almost feel their presence, odd to say but true. I became quite tearful, as did a few other parents and DSA staff. Also so many movers and shakers in one room is quite a rarity.

Some of the Mums and models in the Normansfield theatre

Watching our children run and giggle and pose and hug and make friendships and scoff tasty treats, the world so much more their oyster than ever before in history. 

Natty and Seb enjoy crisps and a cuddle while Rosie's Dad Tom takes a picture

Of course getting 8 children to pose in one group was a little like getting 8 peas to balance on a swaying twig... 

Kostas, Seb, Poppy, Thea and little Rosie

But we got there in the end :)

Kostas, Seb, Rosie, Poppy, Thea, Harvey, Natty and Jack

Read our story as it appeared in The Sun newspaper with the finished results.

Who knows, maybe next year we'll be seeing stories about children with other disabilities modelling, or better still, it just won't be news anymore...

Silent Sunday Jan 2013

Natty, model with Down's Syndrome in new catalogue

Natty features in the Frugi Organic Clothing catalogue for the second season, SS13. 

I do believe they are the first company to use a model with a disability more than once in their campaigns. So hats off to them.

Here are a few of the best pictures from the photoshoot, which I think really manages to capture her personality and essence this time around.

I hope you like them. Natty had fun as you can see but of course she is a true ambassador, gently changing perceptions of that extra little chromosome from within hearts everywhere she goes.

To see more candid pictures and find out what happens at a photoshoot, read BEHIND THE SCENES AT THE FRUGI PHOTOSHOOT here.

To read about the other children breaking down the barriers to make advertising more inclusive, read PIONEERS WITH DOWNS SYNDROME here.

To dee more pictures and read about Natty's other jobs visit our NATTY G: MODEL WITH DOWN'S SYNDROME PAGE.

Behind the Scenes at a Frugi Photoshoot: Model with Down's Syndrome

Have you ever thought about whether your child would enjoy modelling? Do you wonder what it's like behind the scenes of a photo shoot? It's different every time of course, Natty has worked for Eden Project, Jojo Maman Bebe, Scott Dunn and Frugi before, but there is a general pattern each time that your child will either love or hate.

Just before Christmas Natty took part in the Spring Summer '13 Catalogue shoot for Frugi and I decided to take my camera along to capture some of the 'warts and all' behind the scenes action.

You'll see it's all good fun, especially for a natural show-off like Natty. Yes, there is a little bit of waiting around, some noise, other children, a few outfit changes, but you get to meet some lovely people, and Frugi always provide wholesome snacks and drinks to keep us going :)

We got paid in vouchers to spend on clothing, which is always nice!

Rows of gorgeous organic cotton clothing, organised into outfits for each model

Natty loves to dress up and check for pockets

Natty takes position on the stage ready to...

...perform her karaoke routine of Mary Poppins songs

She then meets and greets the photograher and Frugi ladies, her public,
rousing them after a long day in the studio

Trying to eat the chocs we gave Frugi for Xmas

There's nothing left now, but to perform her party piece...

...dressing as one of the Frugi team!

And ta da!

And how they manage to capture images like this amidst 
all of that beats me!

The new Frugi Spring Summer collection is launched on Friday 18th January 2013. You can browse online or order their catalogue here. Look out for Natty amongst the other lovely models.

Thank you Frugi 

H x

Natty's 6th Birthday

Children's birthdays are wonderful yet emotionally complex markers of time for me.
I've decided therefore to do two posts about Natty's 6th birthday, and this is the light-hearted one about parties, presents, jelly, tutus, Pass the Parcel, friends and family....

This time last year when Natty was 5, her Dad was unfortunately working away. I did a simple party at home but it's hard to take pics and cook and organise games and stop kids crayoning on your walls and smile and enjoy all at the same time. It was a lovely day, but passed me by in a slight haze. Read about it here in An Unexceptionally Exceptional Birthday.

This year was very different. We had celebrations over 2 days. A mini tea party with just our immediate family on the day and a party for school friends at the weekend.

Mini celebration on Natty's birthday with simple cake number 1

Not only was Daddy Downs Side Up here, but Natty's big brother and his wife were visiting too. We had an army of help and it meant we could all enjoy the tiny details of the day.

A very happy birthday girl

For the first time I think Natty understood that her birthday was coming. She got excited and chatted about the party both before and after the event. I'm so happy that she clearly loved every minute of it. Pictures speak louder than words, so here they are...

Cheeky Monkey!

The birthday girl donned her favourite tutu and big sister  Mia set up a facepainting station for all the guests, starting with hearts for Natty.

Natty then then painted some of her friends' faces before decorating her big brother and turning him onto a rosy-cheeked elf!

I adore the look of concentration and love here

No party would be complete without a selection of games: Pass the Parcel, Pin the Purse on the Mermaid, (please excuse my feeble art skills!), and every parent's favourite Sleeping Fish (there was a vague swimming theme), as well as colouring in a little thing that shrinks in the oven, doing your own puppet show and decorating your own party bag.

Pin the Purse on the Mermaid, Pass the Parcel and Puppet Show

The children were all beautifully behaved and worked together, instinctively allowing for each others differences; explaining, calming, comforting, dancing, laughing, hugging, cheering up, consoling, asking for help if necessary. Wonderful to see, and exactly how it should be.

When it was time, they sat down for tea. I decided to swap traditional party food, which is always more time consuming and costly than you think to prepare, for a starter of cubes of cheese, pineapple and grapes on sticks, then a bowl of pasta and  blitzed homemade veg and tomato sauce (so easy to knock up in advance) finished with mini trifles in cups (fruit and sponge with jelly, then custard and sprinkles). All so easy and enjoyed by the kids and when their parents picked them up they knew they had eaten a 'proper' dinner too.

But enough waffle about healthy birthday banquets... the main player in this stage of the party was... the much anticipated... CAKE!!!

The cake, the reaction and the fingers in the ears during the very loud singing!

I am no baker. It takes me a whole day to make a birthday cake, but having bought them in the past I have to say I prefer the shabbier looking variety that is infused with the secret ingredient - LOVE. Well, it was a swimming pool affair with splashing Peppa Pig and George amidst a bright blue jelly (What a to-do making that I can tell you! Many a night was spent consulting friends on Twitter to work out how to do it), complete with icing floats and lilos. It wasn't perfect, but it was 'good enough' to please the children. (Phew!)

And there you have it, another unexceptionally exceptional birthday, like many taking place in homes up and down the country every weekend.

Birthday parties are a wonderful time to see the joy of inclusion first hand, to see how our children just accept each other for who they are. It always means so much to me and I see what I was denied as a child growing up in a more segregated society where people with disabilities were hidden away. Read The Significance of the Birthday Party Invite for a light-hearted look at this.

Thank You Mummy's Little Monkey

It doesn't take much to bring a tear to my eye, but this week it was the turn of Mummy's Little Monkey to do so... for the lovliest of reasons.

Jacqui is an accomplished blogger and writer, an old hand at this game, and I was utterly astonished when she pinpointed our little Downs Side Up family as worthy if a gift. Yes, a random gift, just for being us.

The parcel arrived with a DVD for DaddyDSU and I, one for the girls, Lush goodies galore, and a pretty Luna bracelet for our little ambassador.

Read Jacqui's post here Spread a Smile (downs side up)

I think this is such a lovely idea, and really did bring me a lot of joy at a time when I was spending too many hours 'downssideupping'. I might just pass the love on in the future and carry on this tradition with a gift of my own.

Thank you from us all Jacqui. 

(Bob says he assumes the pink bath bombs are for him ;) )

Make Your Keyboard Child-friendly

All children learn to form lower case letters first. 

Children with Down's Syndrome might need to use programmes such as Clicker to assist them in the early stages of writing. They can't hope to equate the capital letters shown on a keyboard with the symbols they are learning to form themselves. 

Enter an inexpensive set of lowercase keyboard stickers. We bought ours from Amazon at around £5, but many SEN sites also sell them.

Be warned... you need a steady hand to complete the lowercasification task!

Mummy and Daddy Love You Both More than Words Can Say

Mummy and Daddy Downs Side Up

Just a couple of weeks ago Natty spontaneously said "I Love You" for the first time. Those three words that mean so much.

She'd signed it, repeated it back to us, shown us with hugs and squeezes, even said "Mummy, Daddy, you happy me", but this was a new high for us.

Mia continues to tell us daily with words, poems, drawings and letters.

Here are some words I wrote for the girls at the beginning of the school year, on Natty's fisrt day, exactly a year ago. We gave it to them in an envelope with a gift of flowers. This was written before I began blogging.








Mummy and Daddy are so very proud of you both for so many different reasons...

Mia Bella, you were born beautiful and smart, dark and strong, with a wise knowing face that midwives said 'showed you had been here before'. You instinctively and impulsively knew what you wanted out of life from day 1, and communicated it to everyone around you. 
7 years on, you are not only clever, musical, artistic, feisty and unafraid to stand out and be different, but you are the most caring and thoughtful and hilarious friend, clasmate and family member anyone could wish for.
Believe me, you will get there, wherever 'there' is.

Natalia, you have overcome obstacles that few can comprehend. You fought for your life in those first weeks in intensive care. You learnt to breastfeed after 3 months, against all odds. You survived heart surgery. You have learnt to walk and talk and smile and sing and paint and cook and ride horses amd make friends. Most of all you have changed opinions and melted stereotypes wherever you go. Today you confidently stride into mainstream school, making a mockery of all who doubted you ever would. This is the beginning of a new and long journey, but it is an exciting one.

We love you both more than words can say xxxx

The New School/ Home Ed Term

We've been dropped on the shore of a new term, today our first day back, having ridden the crest of a wave all through the summer holidays.  

It was our best summer ever, the girls were super company, got on well for the most part, and the house was filled with visiting family end to end. I think we only watched Mary Poppins about 87 times too, which wasn't too bad going ;) Read about our summer experience here : Looking Back, Looking Forward

Now we are ready to plough on, full of enthusiasm and determination to be better organised, get up earlier, work harder and happier, fit in more play and leisure time and ditch the stress. (ahem, that is not unrealistic is it?)

Natty has moved up into year 1 alongside her peers. New classroom, new teacher, new (slightly higher) loos. The few teething troubles of last year have hopefully been ironed out. The new class format is more table-based and formal, in a warm, colourful welcoming way. Gone is the role play corner and boxes of dressing up. This could go one of two ways, but I'll wager that Natty will thrive and soar with less distraction, freedom, (chaos even) and will don the more grown up hat of a year 1... we'll see. Maybe it was the exciting air that made it seem OK for Natty to push her classmates. I hope that this behaviour will also dissappear. We haven't seen it over the summer.

Also new for this academic school year is that I will be teaching Natty from home for one day a week. This wouldn't be for everyone, but I felt it was right for us.  I didn't want to Home Ed entirely, as Natty thrives in the school environment, a popular and communicative pupil. She has learnt so much from the daily routine of school and I cannot begin to compete with their resources, and quite frankly, I'm not sure my sanity would stand up to 24/7 education. But this particular balance feels right. Our amazingly supportive Head is behind us, understanding fully my reasons and thinking.

Essentially on our one 'playing schools at home' day, I will stir a mixture of what is going on currently at school with what is coming up in the following week. I will add a generous measure of life skills and a sprinkling of sporty fun.

Why can't you do all this in the evenings and at weekends? I hear you cry. Well, when the girls are at home I treat them equally. We play and bake and read together, but it's impossible to tell one to go away while I quietly work with the other. This way I can have undisturbed learning time with Natty without Mia feeling pushed out of the equation, or, as is more likely, feeling she wants to be the teacher.

Our Wednesdays will be fluid and subject to change, but tomorrow's plan looks like this:

Drop Mia at school

Do a short shopping trip, using a magnetic shopping list. Ask Natty to pint out the right shop then  encourage her to ask for the items such as apples and bread, help bag them up and pay.

Go home for a good 2 hours formal learning comprising:
Reading current school book - reinforce with key words and flashcards. Make sensory words, using sand glued onto card.
visit www.oxfordprimary.co.uk website for additional, alternative activities for the same book.

Finish summer scrapbook by sticking in photos, leaflets from places visited, adding drawings and labelling.

Begin our Days of the Week project, incorporating Makaton, pictures of what we do on different days, using our velcro calendar and wearing the appropriate socks and pants for that day! Make colourful shapes with each day of the week and blu tac onto kitchen window!

Then we will do some life skills in the afternoon.
Having collected eggs and looked after the chickens, I plan to make cookies tomorrow (constipation-busting ones of course). I have printed images of all the ingredients and we will do a matching game with them, then find the ingredients in the kitchen. When we've made the cookies we will glue the cards into our book and Natty can write 'and' between each one. Her first recipe card!

Then we'll get Mia, come home, run round the garden, plan tea, do homework, bla bla bla.
Don't expect to see me on Twitter on a Wednesday evening. I will most probably be tucked up in bed at a reasonable hour for once.

I Love You x

Mia is often the spokesperson for both girls

3 small words. Too often spoken. Not said enough. 

"I love you."

Our daughter Natty, Natalia, Noo Noo is very vocal, very chatty, little girl with Down's Syndrome.

She's had speech therapy over her 5 and a half years, half-heartedly from local SALT sources, (because they are under-resourced), and once a year from a UK top private therapist who visits all our local children when we've fund-raised enough to bring her down. In between it's Mummy and Daddy who provide the additional help. Thank goodness my background is in teaching...

We tell our children we love them all the time, many times a day. Natty has begun to repeat those words, copy us parrot fashion over the last 6 months.

Tonight, as I lay next to her in her crisp white, pink-dotted bed, after reading Where The Wild Things Are and acting out the comedy 'terrible roars' and 'gnashing our terrible teeth', she looked at me, squished me close and said;

"Mummy, I love you."

The perfectly articlulated sentence pierced my ears and filled my heart all at once.

My head said "Good talking Natty", but my heart melted. It crumbled, tears welled, despite my trying to hide them.  In 5 and a half years I have not heard this phrase spontaneously spoken. A phrase that I heard from Mia at around 14 months as I recall. Back then it brought tears to my eyes, when it arrived, on cue, as expected...

"Mummy sad?" asked Natty.

I bit my tongue and coughed. Smiled and squeezed her hard. Smiled like a Cheshire cat.

"Noooo, Mummy is crying because Mummy is happy" Much Makaton was used to reinforce the message.

We snuggled and I said goodnight, Daddy and I swapped children and he and Natty had their snuggles too while Mia and I read Clarice Bean together. But the lump remained in my throat.

Coming downstairs and reflecting on hearing that phrase, the phrase that all family relationships pivot around, brought the tears back. I realised that I had told myself that not hearing those words spontaneously was not an issue. It didn't matter. I had buried the feeling of wanting to hear them, smothered it in pride about Natty's other achievements, taken her hugs and kisses as supplements for the phrase itself.

Mia says it all often, draws pictures even, to show us how much she is loved, and that has always filled the void. It has more than made up for hearing the spoken phrase x2.

But at the same moment I realised that Mia is saying it less often, only when she really means it. She's 8 and has suddenly lost her chubby cheeks, replaced by racehorse legs and a bob haircut. Wanting to be at my apron strings has been filled by a desire to be an Olympic dressage rider/actor/poet. Creating some art masterpiece at 7am has become the new creeping into bed with us in the morning.

And so, in one stroke, we have a gorgeous little person realising what love is, grateful for her family and drawing us further into her intricate personality with 3 little words. And another, slightly older person, finding her wings, stable and confident in our love for her, and discovering her first footing in the world, using her family as the bow from which her arrow will spring.

That too makes me weep with tears of pride but tears of sorrow at the infant phase now lost.

This summer has been a line drawn in the sand indeed.

Read our words of love to our daughters, written in a letter at the beginning of term Mummy and Daddy Love You Both More Than Words Can Say.

Silent Sundays

Tooth and tears - Sunday 30th September

Natty: model, sister, daughter, friend - Sunday 23rd September

Silent Sunday - Home Ed: 'a' and 's' the kinesthetic way!

Sunday 9th September 2012

Silent Sunday - Mia's Love 2nd September 2012

Silent Sunday Natty's modelling debut with Frugi 26th August 2012

Silent Sunday Shhh, don't tell mum 19th August 2012

Silent Sunday Family volleyball 12th August 2012

Silent Sunday 29th July - Hush Little Cousin x

Silent Sunday 22nd July '12 - Sisters in the Sun

Silent Sunday 15th July '12 - Junk Robot.

Silent Sunday 8th July '12 - Cycling!

Natty, 5 - Model with Down's Syndrome

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

Natty models for  Frugi

When I began writing Downs Side Up some 6 months ago, my motivation was partly to show the world that children with Down's Syndrome are utterly beautiful, certainly not to be feared and deserve a place in the heart of our communities, where they can live in a fully integrated way and give so much back to those around them.  I wanted to uplift and inspire new parents, show them the possibilities, give them courage.

I began thinking of a many-pronged approach to reach this aim and the blog became the hub or core from which all other threads emerged.  Then came Downs Side Up on Facebook, more recently we've been getting our voice heard on Twitter @downssideup and laterly on Pinterest.  It has been amazing to meet so many like-minded, inspirational parents here, but my thoughts soon turned to how I could preach to those who were not already converted.

I started thinking that our childrens' beautiful faces should be visible in everyone's lives, popping up in catalogues, magazines, on TV, ads even, another facet of globally accepted beauty.  
I started writing to companies and model agencies, 2 or 3 a night every night, asking for their support.  Several were very supportive but politely said Natty was not 'chocolate box perfect' enough.  Others ignored my emails completely.  But a special few replied immediately with an open-armed 'yes'.  Frugi organic kids clothing was the first, the other was Scott Dunn Travel and then came Jojo Maman Bebe, who coincidentally use several models with Down's Syndrome and are proud to be inclusive employers also.

Modelling wouldn't be everyone's cup of tea, but little show-off Natty is a natural in front of the camera.  At our first Frugi shoot she began posing before we had even changed her out of her school uniform!  Highlights of the afternoon were a vigorous game of kiss-chase with a male 3yr old model, (Natty was to be heard called 'come here and kiss me now!'), stroking the photographer's stubbly beard (No, that wasn't me. Honestly.), and dancing with a cardboard owl (what a hoot!).  

After this, national paper The Sun, online publications such as The Mail Online, our local radio station, Bella Magazine and even ITV show Daybreak wanted to share the story of a little girl with Down's Syndrome taking the modelling world by storm...well, turning it on its head anyway.  With each published and broadcast story, Natty clearly shouted from the rooftops that Down's Syndrome is to be embraced, loved and accepted.

Natty's agent Alison Smith-Squire 
writes about how the 
Downs Side Up word is spreading

Of course, all parents of children like Natty know why they are so beautiful.  It isn't simply the packaging on the outside that makes them so, although their delicate features apparently echo those of the perfect dainty doll.  No, it is something that radiates from within their souls, their innocent hearts, that 'live for the moment' Joie de Vivre, that being utterly absorbed by every activity they take part in, giving everyone they choose to interact with their undivided attention and that born desire to be the centre of attention.  Or is that just Natty...?

Also read The Photo Gallery of Hope
The Face of Disability in Marketing
Gorgeous Models: One with Down's Syndrome