Respite, 70s fashion!


We don't get out often enough. Who does?

So much to do, expensive, tired.

We're home birds, like our own fayre.

Nice film and a glass of red.


For a 40th we made the effort.

70s the name of the game.

Flamable polyester, larmé and wigs

sweaty and itchy but oh! what fun.


We laughed, danced, ate

prawns in a cocktail, chicken chasseur

and yes, there were shots

of vodka. Not wise.


To mingle and relax

forget the worries, 

 appointments, therapies, deadlines

THAT is respite.



Go get some x 


To read what happened to me when I didn't take any respite, and the need for dear old friends to put it better.





Happy Birthday to Downs Side Up! What a Year!

We are one year old today! 


On the 24th of November 2011, I wrote my very first post Blank Blog Blindness. Afraid of who would criticise, certain no-one would read it and unsure of the form the blog would take, I nervously sent my personal thoughts anonymously into the ether.

A year on and we have come so very far!
It's been an organic journey that has taken us by the hand. It's been cathartic. The people we have met, the inspirational stories we have heard, the teams we are now a part of amaze me. Downs Side Up took on its own persona.
The ups, the downs, the trolls, the media, the TV, the children, the nominations, the awards, the competitions, learning about Facebook and Twitter and far too many social media networks to keep up with, doing radio interviews at 30 minutes notice, a snog with Dr Hilary Jones and Natty breakdancing with dance troop Flawless. But mainly the doors that have opened, the minds that have been enlightened, the families that have been inspired, the support network I am proud to have become a part of.
Public speaking, cover girl, national press, Daybreak, Dr Hilary, modelling, Flawless.

In truth Downs Side Up has taken on a life of its own, become a full time (very much unpaid) job, a labour of love if you like. Spokes eminate from its core; public speaking, modelling, writing articles, but all with one aim... to gently change perceptions of Down's Syndrome from within hearts

To celebrate I have decided to make a little video of my most popular post (by a long shot) for those of you who haven't met me. You know, the post I read at Britmums Live and had 500 writers and publishers in tears ;) Yes, that one. What to Say When a Baby is Born with Down's Syndrome. Read the post with additional links to support groups here.



I attach a few of the high moments of the year, and end by saying the biggest thank you to you all, for helping me to spread awareness, to educate and support, to include and love.  Together we are a strong, formidable force to be reckoned with.

Here's to the year ahead. We're not sure where we are going, but we have a long way to go. I am so glad to have you along for the journey x


A Minor Illness: How Lucky We Are

The last couple of days have been put-everything-on-hold, stay-at-home-and-snuggle kind of days with Natty. 

There's been a temperature, there's been vomit in our bed, ingrained in her PJs and even over daddy Downs Side Up's cashmere mix sweater (eugh). There's been a small croaky voice, sore throat and pallid brow, some floppy afternoon snoozes, but essentially she is OK.

She's still managed to make me laugh with her silly impersonations, she's eaten small amounts of toast or mashed potato, she asked for a 'dip, dip, dip egg' and her little giggle has filled the air. She's been well enough to request that awful purple dinosaur on the iPad and to read me a school book. In short, it's a little bug and her body is coping with it.  And as awful as it is to see your child under the weather, I have enjoyed the closeness and the enforced pitstop it has given me.

All of a sudden I realised how grateful I was. How much stronger she has become. A couple of years ago a bug like this would have sent us to hospital with a closed throat, chest infection, pneumonia, croup, laryngitis, broncialitis, a febrile convulsion. I still worry. A lot. But since her heart operation she has been more resiliant. We are not on red alert the entire time.


Natty after her heart surgery


And then I look around me at my online friends, and I see many still living through that heightened state of alert, of worry, of uncertainty. Steph Nimmo into her 3rd week in hospital with Daisy, Renata moving bravely forward with Dom's recent issues, Baby Harry's family still waiting for him to smile after his stomach op. Friends Rachel and Vicky at home, watching over their vulnerable ones for the first sign of change that can signal a long period of illess. 

And then, today, the desperately sad funeral for a tiny little angel with Down's Syndrome who didn't make it through pregnancy into the loving arms of her parents who we had got to know via Downs Side Up. She was so wanted and so adored, and she has changed the world for the better without even realising it, for she has changed opinions and brought family together in an unexpected way. 

Baby Daisy, I have thought of you all day, a wild, windy passionate storm of a day. Tiles flew from my roof, greenhouse smashed, trees fell and cables were torn down and I imagined your parents hearts matched the rawness of the elements as they said their farewells to you. Rest in Peace little one.

And as I write, heavy-hearted, I have a tear in my eye, for I realise the fragility of life, of all our lives, but particularly the life of a child with Down's Syndrome. Pregnancy is a minefield, in more ways than one if you have a detectable extra chromosome. If you survive that, then you are one of only 6%.

Tonight I hugged our girls a little tighter.





Downs Side Up Voted Top Blog



I was honoured to have been nominated in this prestigious blogging award.

I was touched when many parents and support groups began voting and spreading the word.

The morning after the voting closed I am flabberghasted to say the least. For Downs Side Up was voted 8th in the Top 25 European Blogs. Yes, we are inside the Top 10 even. I've had an email saying I'm a winner.

I am even slightly embarrassed because I am among some very very  experienced and renound writers whom I  consider to be my inspiration. Likewise some utterly amazing blogs didn't make it into the Top 25 where they belonged. I was voting for them daily.

So, here is a massive thank you to each and every one of you that took the time to cast a vote in my direction. 

Together we are helping to gently change perceptions of Down's Syndrome from within hearts. Together we are showing the world that our children are amazing.

Blending CVC Words and Making Biscuits!

Learning to read and write through cooking. What better way to a little girl's head, than through her tummy. Here's what Natty and I got up to on our latest home school day.



1) We looked at pictures I had downloaded of ingredients for our cookies. (Constipation busting ones of course!) We said the words aloud together, shouted and whispered them, giggling.

2) I gave Natty 2 copies of each picture and she did a little matching game all by herself, finding 'the same'.

3) Then we took the pictures to the food cupboard/fridge and using the visual prompts, Natty found each ingredient.

4) We assembled the ingredients and together weighed and mixed them.

5) After rolling out the dough, Natty created her own shapes and I cut freehand letter shapes, which we then baked.

6) Then the really fun bit. Natty made words from the cookies and drew around each letter with her finger, using the Ruth Miskin flashcards and chanting the rhyme to remember how to write each one.
p - down the plait and round the pirate's head
i - down the insect's body and a dot for its head
n - down the net and around the net
t - down the tower and across the tower
s - down the snake
a - round the apple and down the leaf


Natty traces round the letters with her finger.


7) We ate our words!

Cookie recipe from the BBC adapted to bust constipation!
I usually mix flaxseed/ crushed linseeds in with the seed/nut element of the recipe as this is a gentle but powerful laxative, and replace some of the flour with wholemeal flour. I have been known to include some prune juice too. You can add cocoa powder to make chocolate cookies if your children like that.


Here are some we made earlier!


Tracy's Story of life with Miles

Tracy Upton, better known as one of the wonderfully inspiring duo Singing Hands, has had an article published about her journey with her son Miles since he was born. 

The Singing Hands: Suzanne and Tracy

The article, published in Families Upon Thames, resonated with me on so many levels, from the shock at birth, to how very much she has learnt so many life lessons from Miles, and the motivation he has given her to get out there and make a real difference for so many others.

Singing Hands DVDs are never more than a couple of days away from the TV screens in our house. Before Natty could talk, she could sign I'm Dreaming of a White Christmas after only watching the incredibly catchy ladies about 3 times, and she continued to sign that song until about June of the following year, such is the extent of how memorable they made it.

 Read Tracy's amazing story here.
So honoured to have been given a mention too.



Jojo Maman Bebe Xmas Catalogue: Models with Down's Syndrome

Jojo Maman Bebe's Facebook banner


Natty and Seb (M&S) in the Christmas Edition of the Jojo Maman Bebe catalogue



I still adore the outtakes!

Constipation and Soiling: A Pain in the Backside

Yes, this is in our actual loo...

Last week I wrote a light-hearted and humorous post about a badly timed poo explosion in a posh car showroom: Timing is Everything - Poogate.

We've all been there, we can all identify with the embarrassment, the smell, the desperate need to find wet wipes and clean clothes. But I began thinking about the more serious side of poo problems.

Children with Down's Syndrome are more prone to stomach troubles, be it contipation, diahorrea or more complex structural issues.

The Down's Syndrome Medical Interest Group (DSMIG) published this leaftet, courtesy of the Down's Syndrome Association Gastrointestinal Problems in Children with Down's Syndrome if you have concerns.

The Bristol Stool Chart pictorially lists different consistencies of stool, to aid identification of contipation.

ERIC the Childhood Continence people have an amazing few pages on constipation and soiling that cover virtually every aspect of the subject, will answer many of your questions and provide suggestions that you can choose from to suit your child.

They also have information on Rock and Pop techniques, where you encourage your child to gently rock forwards on the toilet with their hand pressing the left side of their stomach, relax, then sit back and 'pop' the poo comes out. I couldn't find online examples of the leaflet.
 Please let me know if you have them.

Natty has a varied, balanced, healthy diet. She's a little 'fruit bat', but getting enough water into her is more of a problem.  We keep a drinks bottle on hand all the time and offer her little sips whenever possible. (Remember not to use a cup that makes children tilt their heads back, or jut their jaws out, but rather one with a simple straw. See Top Tools for Terrific Talking
Now we more or less have things under control with a tiny daily dose of a gentle child laxative and the addition of a couple of family favourite recipes, certain to get the whole family moving in the right direction. Here's the first...

Bob's Mother-in-Law's Home Baked 'Dirty' Beans

Bob is a chap I did some teacher training with many moons ago. 
He married a beautiful Japanese lady and it was her mother who created this recipe after trying the Heinz variety on a visit to the UK. She returned home and tried to figure out how to replicate the dish. I think she surpassed herself with a dash of panache!
They can be made in batches and frozen, and they will fight even the most stubborn case of constipation. I'd almost guarantee it!

1 onion
I pack of dried white beans
bacon
ketchup
A chicken or veggie stock cube
Soak the beans overnight.
Boil the beans as instructed on the packet - mine were some Japanese white beans and took 90 - 120 mins to boil. You could speed up the process in a pressure cooker.
Change the water halfway through or you will have windy pops. 
(This can be verified by our family when we ignored Bob's advice!)

Fry the onion, bacon in a dash of olive oil until soft.
Add some water (maybe half a cup) & the stock cube to the fried onions.
Stir until the cube disolves.
Add a dollop of tomato ketchup and the cooked beans.
Stir, warm through and taste.
Add water/ketchup for the taste and consistency you require.
It takes a bit of time but it's not like you have to watch them boil, and tastes better than the 'real' thing. It's because you add the secret ingredient (LOVE) that makes them even better. (Mia makes a heart with her hands and blows the love through it into the recipe.)
Serving Suggestion:
Serve on marmited toast with a sprinkling of grated cheddar.


Thank you Mrs Sugiura from Kitamoto x



You might also like to read How to Increase you Child's Fluid Intake here.





Circle of Moms top 25 blogs competition

 

I am very honoured to have been included in the above blogging competition this week.

I am always the first to say that I don't blog for statistics, financial gain or freebies, but to have your work recognised and to spread awareness of Down's Syndrome is wonderful.

If you like what we do, you can click the button above and vote for us. We currently stand at around 70th (scroll down). The process takes around 30 seconds.

Thank you xxx

Natty on ITV Daybreak


Today we will be chatting on Twitter about people with disabilities being represented in advertising and the media in general. Mencap and Seb's Mum will be there too.

As you know Natty models. It is just one spoke in the wheel that is Downs Side Up, more of a talking point for change and a symbol for inclusion society wide than anything else.

Do join us on Twitter between 12 and 2pm if you have a moment and use the hashtag #adinclusion. Let's tell the world how beautiful our children are!

For a little background, I've dug up the DVD of Natty and the rest of the family when we appeared on ITV Daybreak 6 months ago. We chatted about life, chromosomes and cake mainly!
My how she's grown since then and Mia has since grown all her big teeth! We had a suitcase stolen en route to London in the train, so we are rather hastily dressed out of what we had left and a last minute shopping dash to Oxford Street.

Watch out for Natty stealing cake *signs the Makaton for cake*...

(Please excuse the quality, I videoed it from the laptop. I'll work on redoing it.)


Teaching Shapes in a Visual Way

Today was Home Education/Flexi Schooling day when Natty and I spend some quality time together and she get undisturbed learning time.


Sadly she had her flu jab this afternoon and came home and chilled out on the sofa, snuggling me. But we had a very productive morning learning about shapes.

Here's what we did for CIRCLES and SQUARES.

1) We went on a treasure hunt around the house (using loo roll binoculars) to look for square and circular objects. We collected them on a tray, saying each word aloud.


2) Natty sorted the objects according to shape, with help.


3) We decide to make a picture with the circles. 
Natty made this caterpillar. I love the eyes!


4) Natty carefully drew around the shapes to make an impression 
of her collage on the paper. Sometimes I held the objects still and guided her hands. Great for fine motor skills development!


5) Natty signed her masterpiece proudly, using her emerging writing skills.


6) Natty stuck her circle painting on the radiator for all to see.


A simple, and virtually free activity any child will enjoy.






Marks and Spencer: Seb White Models

Oh finally. About time. And hoo-bloomin-ra!


A major high street chain are using a child with a disability in their tv ads.



Seb White in the M and S Xmas campaign
It's also the first time that M and S aren't employing celebs in their Xmas advertisement. 
Presumably following data suggesting that consumers felt the brand was out of touch with the average person.

Seb White is a gorgeous little boy that we know 'virtually' as he also features with Natty in the Jojo Maman Bebe catalogue for AW12. Marks and Spencer took him on after his Mum Caroline posted a photo of him on their Facebook page.

You can see a sneak preview of the ground-breaking ad here. I bet you'll love it as much as Natty did. Go Seb, go! 


To see Seb and some other ads featuring actors with disabilities hop over here to our YouTube list Disability in Advertising

See Downs Side Up's appearance on ITV Daybreak here. To read more about children with Down's Synrome who are modelling read Pioneers with Down's Syndrome

For a beautiful selection of photographs of children with Down's Syndrome modelling, check out our Pinterest Page

For details of Natty's modelling career so far read Natty, Model with Down's Syndrome

Listen to an Interview with Hayley from Downs Side Up on Heart Radio here.



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

x








Silent Sunday: Natty G and William Shakespeare

Daddy Downs Side Up and I had a recent trip to Stratford upon Avon, and in the ye olde shoppe at The Globe theatre we spotted this T Shirt. 


"We know what we are but know not what we may be" Hamlet. Such wise words.