What Did World Down Syndrome Day Achieve?

On the 21st of March, 2014 we joined forces to celebrate the 9th World Down Syndrome Day together. The charities Down's Syndrome Association and Down Syndrome International decided that the theme of the day was health, and as a way of getting everyone involved we wore our funkiest socks... 

'For we are all colourful and unique.'

(That's a phrase I coined as a stock response when people ask what the sock theme is all about.)

But I was conscious of mutterings in the wings:

Warrior Mums by Michelle Daly

I am very proud to feature alongside many inspirational disability advocates and campaigners in new book Warrior Mums.

A few months ago I met a truly inspirational lady, Michelle Daly via Twitter. In  nutshell, Michelle was the youngest person ever to become the legal guardian of someone with a disability in this country back in the 70s, and she has written an incredible story about her journey with Marie in her must-own book With a Little Help From My Friends.

Down Syndrome Awareness Month 2013 #DSAM2013

As parents and siblings and carers of children with Down's Syndrome we very quickly become top experts in our field. 

We are: 

doctors 

teachers

speech therapists 

story tellers

geneticists

physios

occupational therapists 

play specialists

artists

tailors (I'm very good at sewing up hems on sleeves)

nutritionalists

campaigners

historians

fighters

carers

mentors

spokespeople

The list goes on of course, but I for one wasn't quite so knowledgeable about what it meant to have Down's Syndrome when Natty was born nearly 7 years ago.
It has very much been a crash course, with Natty as our greatest teacher.

So I think we should be a little gentle on those who aren't in the 'inner circle' and don't quite have all their facts straight. Those who don't quite get the terminology correct or believe an outdated generalism to be true. Why would they? 

Certainly everyone is 'aware' of the condition, knows what Down's Syndrome is, looks like at least. And for we parents and those in the charity and support sector every single day is Down Syndrome Awareness Day/Month/Year.

So why are we doing this...? Do we need a Down Syndrome Awareness Month?

Well, as long as new parents continue to feel as worried and confused as we were in the early days, as long as 92% of parents with an antenatal diagnosis feel that Down's Syndrome is so scary that a termination is the only answer, as long as a professional working with adults with DS exists in the land who comes out with bafflingly ridiculous statements like "He could speak really well before he caught the Down's Syndrome," and as long as individuals with DS are the target of hate crime, offensive language or inexcusable bigotry around the world, then I feel an Awareness Month can only be a good thing.

And to those whose heart is in the right place but who let insensitivities slip, we can gently put them straight.

So, to raise awareness of certain issues or causes that you are involved with, to iron out a few myths, to signpost support groups or invaluable information, to let us know about charity events or to share your all time favourite blog post or article, please attach them in the comments section below, or join the blog hop linky at the bottom of this post. 

A blog hop also means that you visit others' posts, so this is a super -de-duper way of bringing the Down's Syndrome community together, making us all stronger. You can copy the code at the bottom to add to your post and the others in the linky will appear on your blog too.

Let's see if we can get 31 at least, one for every day of the month. 

Let's make a change together.

Champagne buckets full of love and ladlefuls of tears

Way back on Mother's Day this year I sat alone in my kitchen and sobbed at the news that a panel of judges had chosen me as one of 10 bloggers who had been noted for their Outstanding Contribution

I cried with pride, I cried with surprise, I cried with tiredness, I cried for the way we have yet to go.

The months passed and I grew excited for the glitzy, star-studded evening at the Royal Kensington Garden Hotel, hosted by Sally Whittle and her team at the MAD Blog Awards, Tots 100 and Parentdish.
As the day dawned, I dusted off my fave shoes and dress and I caught my train from Cornwall to London. I revelled in the quiet solitude and absence of internet. It was enforced relaxation.

I was looking forward to meeting some of my favourite bloggers again, my gurus and inspirations, and getting to know new ones over a glass of wine. The prospect of finishing a sentence without interruption is always an exciting thought as a parent too.

But my mind could never move far from Jennie Henley of Edspire. I wondered how she would find the strength to attend the event which she was doing in honour of Matilda Mae. I worried about her health as she faces a miscarriage. But I knew she would have friends to hold her up as she collected the award we all hoped so fervently she would win, but I worried none the less.

After a freshen up on arrival in the Big Smoke, I met lovely supportive Kate of Kate On Thin Ice in our hotel bar and we shared a little snifter and an appraisal of all that is great about blogging before catching a taxi to the venue together. (Well, it's hard to walk all of 500 yards in pink patent stiletto heels... )

As we entered the foyer my nerves rose as I remembered my inability to match the real names to the blog names and faces as well as avatar images of all the writers present. I am, after all, the one who asked Sally Whittle if she was a blogger at the Legoland Winsor day out. I hang my head in shame. (Sorry Sally!)

My tactic of simply gushing "Hello daaarling" at everyone worked though, and the lovely young bloggers who we joined just giggled at my cluelessness. Someone made my evening by saying I could be excused my failings as I'm so nice!

I really enjoyed the company of the funny Sarah Grenglish and WallyMummy who write Just a Normal Mummy and the oh so sweet Filipa from Gourmet Mum in the bar and I was so honoured to meet Actually Mummy's beautiful family and got chatting to her gem of a husband. The conversations about changing the world of paediatrics had started.



It was time!

Time to go to the Awards amongst a bussle of excited chat about hair, shoes and dresses and make-up along the red carpet (and that was just the men!) and onto a photo shoot  and a glass of bubbles with the simply gorgeous Dr Ranj from CBeebies.

I took the moment to whisper in his ear and ask him if he was a real doctor (he is) and tell him that Downs Side Up works with the NHS to improve the delivery of diagnosis of Down's Syndrome. No time the present to push for that change...

Unfortunately the leaning forward and whispering looked like I was accosting the poor man. Ooops!










I was delighted to be sitting next to Michelle from Mummy from the Heart, who is gorgeous inside and out, a real hoot, and who made me eat more risotto "to soak up my wine." Very sensible. We giggled with Tom, Dr Ranj and Vanessa from HPMcQ, who I described as a priceless cross between Anthea Turner and Amy Winehouse.
I was completely rubbish at taking enough photos on the night because, well, I just got stuck in chatting mode, but here's a selfie of Michelle and I.

Photography by Tom Arber

The Ceremony began and so very many of my favourite bloggers won awards, you can read the full list here, including two other Cornish bloggers Coombe Mill (Best Family Fun) and Frugal Queen (Best Food Blog) and fellow Down's Syndrome advocate Tom from The Futures Rosie who took home Best New Blog. I couldn't have been prouder. I stood to clap as he collected his trophy which he dedicated to Rosie.

Look What Love Has Done

The final category of the evening came, that of Outstanding Contribution and we were all stunned into silence which very quickly turned to tears and quiet sobs as a beautiful film was shown highlighting the work that each and every one of those women had selflessly done. I couldn't believe I was named amongst those who had fundraised on a gigantic scale, travelled the world helping others, given of themselves for free, supported women to get through the most difficult of times, raised awareness of SIDS and other medical conditions, issues surrounding premature birth, brought political fights to the fore, campaigned in parliament, the list goes on. 

                       

I hadn't set out to do any of that in the beginning, but Natty, Downs Side Up, the Down's Syndrome community had taken me on its own, organic journey. 

All photography by Tom Arber

Instead of simply reading out the winner's name, we were then all invited to the stage.

Alexander Residence because her videos are hysterical and THAT’S the way to raise money for charity. Penny works very hard on her blog and putting PRs in touch with other bloggers. She has a wealth of knowledge and is never too busy to share it.

Childcare is Fun because Fiona’s blog offers a free parenting advice service through which Fiona tirelessly answers dozens of queries a day. When she’s not blogging, Fiona organizes charity fun days for Save the Children, runs marathons for charity and is helping to organise a fundraising programme for baby Noah, who was born with Spina Bifida and hydrocephalus.

Dorky Mum because no cause is too small for Ruth to promote on her blog, and she always does it so eloquently. Ruth’s constant, unrelenting belief that change can and will happen is joyous, and her support of campaigns from Save the Children is deeply inspiring.

Downs Side Up has worked miracles for awareness of Down’s Syndrome in a very short time. Hayley has a gentle way of saying important things that help change perceptions, making us feel a part of her fight.

Edspire because in the face of terrible loss, Jennie has found the strength to support other families by raising awareness of SIDS and beginning to fundraise for charities that help families suffering the loss of a baby.  Beyond this, Jennie continues to be a fantastic mum to toddler twins, with inspiring crafts and fun activities.

Kate on Thin Ice because Kate is an understated force for change, quietly boosting the mojo of Mums via her blog and regular Twitter chats and parties, and regularly helping to raise awareness for charities online.

Mummy from the Heart because she goes out of her way to support and offer advice to new bloggers, on her blog, and through conversations on Facebook and Twitter. A busy Mum, Michelle isn’t afraid to step back from blogging to keep a healthy balance with her real life and family.

Not Even A because Kylie is an absolute rock for Mums in the premature baby community, generous with her time and advice. Kylie campaigns tirelessly for Bliss and baby charities to raise awareness of neo-natal care, and has inspired bloggers in the past year by overcoming huge adversity and still sharing support with other members of the community.

Patch of Puddles because Merry is helpful and supportive to so many in the blogging community, especially those who have lost babies.  When she isn’t home-educating her children and running a business, Merry works tirelessly with charity, bringing together bloggers to sponsor children with World Vision.

Thinly Spread because Christine is the parent we’d all like to be – intelligent, unflappable, and barely a hair out of place. But also because Christine balances blogging and blog activism perfectly, producing amazing words and gorgeous images into the bargain. She’s like the wise brown owl of the blogging world!

The tears flowed. Some held it together more than I, but to the stage we went, all conscious of Jennie, how much more emotional than the rest of us she would be feeling. I thought of Dorky Mum and Kylie from Not Even a Bag of Sugar who could not be there. I could feel their presence too. I thought of all the causes we held close in our hearts, the lives of all those that had been touched along the way.

As they read out Jennie's name as the winner, I watched her beautiful face crumble into what looked more like grief than pride, for that award must have been so very bitter sweet for her, her husband, her twins. We all stood, holding hands, hugging, touching shoulders, in a moment of shared consciousness that is hard to describe. It was like a group hug that sent a special force back towards Jennie. 

Then another surprise. Another reason for more tears. 

Every one of the writers in that category was to receive a special award, a precious glass reminder of why we have to carry on, to be the change we wish to see in the world for our children.

Thank you to everyone who made the evening so very special. It is one I will never forget. Thank you to everyone who has read and loved my blog. Thank you to everyone who voted for it. Thank you to everyone who strives with me for a fully inclusive society and who works for better provision for childen with SEN in schools.  Thank you to those who have dropped their fear of Down's Syndrome and instead swapped it for marvel at the beauty of Natty and her fellow models with disabilities. And thank you to everyone who shares my shock at how our civilised society can allow terminations up to and including during birth for babies like my daughter, for hers is a life worth living.

Then Came the Fun Part

Photography by Tom Arber (with the exception of the blurry ones that I took on my phone!)

Afterwards there was a more relaxed feel to the evening. Wine flowed and music played and some even found their way on to a bouncy surfboardy type affair. I floated happily from one writer to the next and was particularly fond of my chats with beautiful Cakes Photos Life and her husband, Rock Chick Alice My Son My Life My Way, the superbly, hilariously tipsy Childcare is Fun and the completely genuinely caring My Two Mums. Actually Mummy looked divine in a furry leopard print onesie, the hilarious antedote to her earlier floor length gown.

And then there was Mr Mozzarella, an impossibly bouncy chef from the Just Eat adverts who seemed to have more than just a passing penchant for blogging Mummies all dressed up to the nines, pictured above with Louise Turner of All The Camping Gear. But the giggles were a welcome contrast to the high and draining emotion of the day.

I returned to my hotel at Pumpkin O'Clock, happy, uplifted, tired, full, extremely proud, feeling inspired...  and with a glowing bruise on my elbow caused by a dancing collision with Mr Mozzarella's ladle and the note to myself never to wear unfeasibly tight magic underwear again, for it riseth up.

H x

Interview with Actor Sarah Gordy

Snooty Fox Images: Sarah Gordy

I haven't actually had the pleasure of meeting Sarah Gordy in real life yet, but she has had a huge influence on me and is a great inspiration not only to our family, but to thousands of others.

Sarah is a beautiful, talented, humorous actor, (you may have seen her in Upstairs Downstairs or Holby City), a charity ambassador, a public speaker and a campaigner.

Sarah also has Down's Syndrome, but is is not all she is and she does not let it define her.

Sarah recently agreed to let Family Downs Side Up interview her. Mia (M), Natty(N) and I(H) wrote some questions for her:

Sarah, when did you first discover a talent for drama? (H)

At school my teachers said I made the other children feel confident on stage so I always got big parts.  Kaleidoscope Theatre were traveling around the country auditioning people, a friend was going and I went along for the ride.  I joined the Company.  Later Granada TV were searching for somebody to do three weeks filming for Peak Practice.  Carousel Theatre said they didn’t have anybody who could do it but they knew somebody who could.  That was my first professional job.

Snooty Fox Images: Sarah Gordy

Where did you do your training? (M)

My mum’s kitchen table really!  Mum, Catherine (my sister) and me. Mum would ask ‘what ifs’ and we would have to imagine. When we had a story we had to think how the people felt that sometimes made us change the story. We learned nursery stories to train the Little Grey Cells. I also did a course in drama at Sussex Downs College but I learned the most at home.

What’s it really like when you see yourself on TV? (M)

It is not really me, it is the character and it is nice to feel the character again.  If it is an interview then I am watching myself, weird but interesting.  I was so disappointed because I didn’t get copies of Live with Gabby or This Morning.  I would like to have seen them. I have seen other interviews though.

Can you tell us anything about your current project? Or is it top secret ? (H)

‘The Colour of Light' is being filmed in August.  The main role is played by Shobna Gulati (“Anita” in Dinner Ladies, Dev’s wife “Sunita” in Coronation Street) I play “Gracie” I went to Wales last week to shoot a teaser scene and some still photos.  Funding is there for the film but we need some more we want to make it brilliant.  Will tell you about crowd funding later.  “Gracie” is a beautiful role, she makes people feel good.

What is a typical day in the life of Sarah Gordy? (H)

Great question, you know what happens if you are filming or doing a play so I will tell you another day.  I will exercise to one of three tapes.  I will look at Twitter if I have time.  I am Director/Trustee of The Oyster Project which is run by disabled people for disabled people of all types. I help run Oyster Drama Group and we do films and plays. Lately we are also doing dance with James Dunbar of Chicken Shed Theatre.  This takes a lot of my time. Sometimes I help out at British Heart Foundation shop when I have time.  I have to do my share of the housework too.

I know you and your sister are very close too. How would she describe you in 3 words? (M)

Energetic  Passionate  Happy

What’s your favourite cake? (N)

A BIG one. Chocolate.  I love most cakes!

Have you got a pet? I have a Chihuahua. (N)

No.  When we were little we wanted one but mum has asthma.  Dad said we had to choose. Keep mum or get a dog.  He joked that mum could cook and a dog cant.

You are an enormous inspiration and a role model for young people with Down’s Syndrome and their families across the country. How does that make you feel? (H)

Great.  I want people to be happy and not limit themselves.  I feel wonderful if I make people feel encouraged.

I talked to a Junior school assembly on Thursday (made the kids laugh and adults cry) about how we dream about what we will do when we grow up.  I said your dreams more likely to come true if you are fit and healthy and I told them about skipping songs their great great grandparents would have had.  I had toured a play called “Walking On Water” with Theatre Centre to schools which had a lot of skipping.  I get asked to do a lot of talks but I need to earn a living.  Wish somebody would make a film it would tick so many boxes.

What issues would you like discussed/raised by families and support groups working with individuals with Down’s Syndrome? (H)

Mum and I have been talking about habits.  

People with Downs Syndrome stick to their habits. My friend is a good worker at Waitrose. He will always do things the way he was taught you can trust him. Another friend got really upset when she came with us to the cinema.  We take a yogurt or a sandwich a bottle of water or juice.  Her cinema habit is loads of chocolate & popcorn and cokecola.  She thought my mum was cruel.  I love her but she has diabetis and can hardly walk.  Habit learned is for life.

What is Your Dream Sarah? (Sarah's bonus question)

To get a role on TV as a real woman not a ‘Downs Syndrome’.  In the old days a black man was just black he could hold a tray, dance etc.  I have played complicated characters on stage and the critics liked it, but TV is conservative.

You can watch one of Sarah's inspiring talks for TedX here.

        


Thank you Sarah. I look forward to meeting you one day soon.
H x

The Rollercoaster of Life: A MAD Bloggers Day Out

A MADs Day Out to Legoland Windsor

The MAD Blog Award finalists and their families

There were MAD bloggers galore
new faces and some seen before.
it was a chance to meet before the big night
and thank our families for their support.

Hayley, Natty and Mia from Downs Side Up

That surreal gulf between knowing an avatar
and spotting someone in reality.
I missed many, for which I kick myself.
I promise to learn names, blogs and Twitter handles.
I will!







New friendships were forged.
puppy love blossomed.
children were nervously chased
as conversations remained half finished.

Natty's day out; eating doughnuts

Too much sugar was consumed
adrenaline made us squeal.
boundaries were pushed
new experiences devoured.

We jumped queues with our gold status
collected badges along the way
our lanyards the souvenir
of a fabulous day..

Reluctance to end each ride
drops of rain, plastic ponchos
tears at the 4D film
we negotiated our lows

Allowing safe risk, letting go
takes practice for me.
feelin sick with each twist and turn
we watched Natty and sis devour the day with gusto.

Up, up and away

"By myself!"

Soon climbing wasn't enough
Natty wanted the exciting stuff!
My phobia of rollerscoasters
had to be concealed.
(As you can see I hid it perfectly!)

Fun at Legoland

So we ended on a high!
The kids got me on a roller coaster
all the while protesting that I have been pushed screaming bravely jumped out of an aeroplane for charity once and that I have nothing to prove!

Home we came,
Natty snored all the way
and woke this morning chattering
"Mummy scream, Mia scream, Natty scream, Daddy scream."


Thank you MAD Blog Awards and Legland Windsor for your hospitality.
xxxx

Downs Side Up is a Britmums Brilliance in Blogging Finalist: INSPIRE

Thank you thank you thank you for all who voted for Downs Side Up in the Britmums Brilliance in Blogging Awards. It has been announced as a finalist in the Inspire Category, one of 6 to make it through.

What a huge honour indeed, and every one in that category is a winner to me, all powerful, selfless writers whose motivation is to help others. 

Although I don't consider myself to be up for the award, instead it is for my blog, which truly has taken on a life of its own. I simply follow its lead and go where the readers and Natty take me...

Next weekend we all head to London for the Britmums Live event, a kind of Mecca for Bloggers, but with Prosecco!

It's a chance to mingle, meet online friends again and learn how to make your blog a better and more beautiful haven and it is here they will announce the finalists.

It's all wonderfully exciting, and right now, between fighting Councillors who say children with disabilities should be 'put down' and trying to get the moral issues of the newDS screening test raised and the family's views heard, it will be a welcome oasis of positivity for me.

Much love to you all, and thank you again.

Hayley

x