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

Finalist in the MADS: Outstanding Blogger Award

I am always honoured and humbled that people like to read my rambling, emotional outpourings, tips and tricks. That they sweetly support my forays into nakedness, public speaking or whatever the latest media plan is.

I am reduced to tears at least weekly by readers' stories both positive and sad, and made to smile daily by the photos they send me of their wonderful children.

I am very proud to have been nominated in the Best Family Blog and Best Blog categories in this year's Mum and Dad Bloggers MADS by Parentdish. The blog gets neglected sometimes because other things take over, but I try my darnedest. Downs Side Up really has become a full time unpaid job so thank you.

THEN I was bowled over to hear that I had been nominated as a blogger who had made an outstanding contribution. Gosh. 

I always consider myself to be a 'rubbish' blogger.

To be honest I didn't know what a blog was when I started Downs Side Up just over a year ago and so I had no bench mark, nothing to compare myself to. I honestly didn't know what I was trying to be, so I just became what I had wanted to see and read when Natty was born. That has always been my only motive.

I found that putting on blinkers (ie not reading other similar blogs) was the only way to find my own voice, say my own thing in my own way, and this often leads me to not read or comment on others' blogs as often as I should. I hope they forgive me, although I'm getting better now that I've discovered Bloglovin'.

I probably work in a slightly artistic way: late into the night, I'm fluffy about deadlines and rather disorganised in my email inbox. I work from the heart, the gut feeling, the muse, the tiniest of motivations, a heart-stopping photo. I actually enjoy talking to people on Twitter, possibly a bit too much, but never for gain of followers.

I might promise you an article, and it'll be great, but you might have to remind me to finish it. You might ask me to review a product. I'll turn you down unless I think my readers would actually like it. Money doesn't ever feature for me, although it might make me remember to write your article ;) And actually, when one spends 10 hours a day on one's blog, a little recompense, just to cover one's costs might be prudent in the long run.

But as my blogging journey progressed, I got distracted. Writing sweet, inspirational, informative, powerful blog posts became the skeleton upon which speaking to doctors, teachers, students, parents, training, campaigning in parliament, taking ones clothes off for charity and to celebrate mummy bodies and pushing companies to include models with disabilities became the flesh. Parents told me I was changing their lives and that became the focus.

I have always counted this as being part of blogging properly. I mean blogging is always at the core of something more, right? But still I am a novice blogger. My site is not glossy and I still think SEO is someone in charge of a large company.

Then, along came the awards ceremonies, well the first of the year, the MADS. I was nominated in the MADS and BRITS last year which is a wonderful boost for any writer. Lots of my favourite bloggers won these awards, others I didn't know before are now an inspiration to me. I went to Brits Live and came back a better blogger and a bit less scared of London. Read Thank You for Having Me here. 

But far too distracted by sitting throught the night researching disability abortion law before facing a panel of MPs to read the MADS page I assumed 'nominations' meant just that, and that voting would come later. I sat and proudly smiled at being nominated.... and missed the voting boat.

Should I have been filling my blog with requests for them? I didn't. I actually don't like touting, but I might have asked my Mum and friends to put in a word, you know, to save face :)

@HerMelness recently wrote The Mad World of Blogging Awards, a post about how important it is to celebrate what you have achieved outside of and in addition to these official awards. I won't lie, it would have been nice to go through to the shortlist, to further spread our word and awareness of DS, but I will focus on other personal achievements. Thank you Mel for keeping us on the straight and narrow in Blogland.

Then, suddenly, I heard that there was a new category for the blogger who has made an outstanding contribution and that I had been nominated by parenting expert Sue Atkins. (I've since learnt others have nominated DSU too). I was utterly overwhelmed and very emotional. I am so very very proud to be considered in that light and yes, you can vote (it's confusingly called nominating) and yes, I will put the link here, if only to show you I am not a rubbish, disorganised blogger all the time ;)

Since writing this post I was honoured to be selected as 1 of 10 finalists in the Outstanding Contribution category. Here's my reaction to that news and a summary of what I've been up to this year on Downs Side Up.

I find this kind of blog post difficult to write. 

It's sort of embarrassing and I can certainly think of a couple of others who should be standing where I am now, some bloggers I nominated myself in fact.

But I am so very enormously proud to have been shortlisted as a finalist in the MAD (Mums and Dads) Blog Awards. The email came through on Mother's Day, which had been a bit different as my husband was working away. As I sat alone in the kitchen after the girls had gone to bed, I read and the tears began.

I rang my mum who was immensely proud. Then I went back to read the email again, just to be sure.

Yes, I had been shortlisted as one of 10 finalists in the surprise category that had been opened after the voting (or nominating as they call it, which confused silly old me, and led me not to ask even my family to vote for me, oooops). This category was called Blogger who has made an Outstanding Contribution.

I can't even write that without welling up again. Good grief.

Now first of all I'd like to say that what I do, the Downs Side Up stuff, is not for any recognition or reward or payment. Basically I saw that the World was fearful of Down's Syndrome, so I began trying to change the World for my daughter and other families, so that they can have the best possible life. I also didn't want any other parents to feel as desperate as I did in the early days, purely out of ignorance and my own fear, so to them I offer tips, advice and hope.

Of course, the blog was how it all began. Downs Side Up is 16 months old now but the blog has long since become the hub of a large wheel of activity. I don't want to bore you, and even I find it hard to remember it all, so here's a list of some of the things I've done this year, in no particular order;

• I've met prospective parents and new parents for coffees and chats, and written to many hundreds of families online, often simply pointing them in the direction of a charity or organisation that can help them.

• The blog was voted 8th Top European Blog and 10th Top Family Blog by Circle of Moms readers.

• I became the Britmums Special Needs Editor, producing a round-up of the best posts around monthly.
• I was invited to Number 10 Downing Street to a Mencap Reception hosted by Samantha Cameron. I met Baron Saatchi, Jo Whiley, The Edge and many many inspirational LD parents.

• I was honoured to be the keynote speaker at the British Institute of Learning Disabilities annual conference, talking to professionals about my journey.

• I was invited to give Evidence in Parliament at the multi-party Enquiry into the Disability Abortion Law, where I pushed home the lack of support that families get when making such a decision, using anecdotes from those I have chatted to.

• I was asked to speak at the Salvation Army Conference and a local church group working on disability services.

• I've gone into local schools to talk to youngsters about inclusion and Down's Syndrome

• I have met amazing adults with learning disabilities and been inspired by them on my own journey as we have become friends.

• I've produced a little DVD to show to medical professionals, giving guidance on delivering a diagnosis and language used.

• I've posed naked, apart from a pair of mismatched funky socks, to raise funds for our 3 favourite DS charities. Yes, it was terrifying. @Kateonthinice made me do it!

• I've done last minute radio interviews on many subjects from disability benefits to parenting and blogging for BBC Radio Devon, BBC Radio Cornwall, Spin Radio and Heart Radio. 

• Natty became one of the UK's first models with Down's Syndrome. She has worked for Frugi, Jojo Maman Bebe, Eden Project and Scott Dunn.

• I found 7 other models with DS in the UK and organised a meeting at the DSA Head office for a celebratory photoshoot which ended in a lovely positive article in The Sun. See the behind the scenes fun here as our children change the face of advertising and encourage companies to be more inclusive.

• We've chatted on the ITV Daybreak sofa and stolen Kate and Dan's Danish pastries live on air.

• Made 500 people cry and stand in an ovation at Britmums Live after listening to What to Say When a Baby is Born with Down's Syndrome. (They are hoping to get Kleenex to sponsor this year!)

• ITV Westcountry featured us and our chickens in a piece about modelling and blogging.

• We've been featured in Bella Magazine, The Sun, Cornwall Today, The Mail and The Express and Woman's Own.

• I've sat through the night writing open letters to bigots, such as Geoffery Clark and Colin Brewer, there was a Girl Guides Brown Owl too. The letters have gone viral.

• I organise linkies and guest posts sessions to encourage others to write and share their experiences, for blogging is so cathartic.

• I've written articles and guest posts for SEN Magazine, Mummy and Me, My Child and Me, Learning Disability Today, Foundation for People with Learning Disabilities, Elite Magazine, the Makaton Charity, MamaUK and so many more.

• I'm flying to Edinburgh to speak at the launch on 21st March of an incredible, powerful new photographic book called 6% My Photographs, Their Words by Graham Miller which features families and young people with Down's Syndrome. 

• I am spreading the word that 21st March is World Down Syndrome Day and encouraging as many people as possible to get involved to spread awareness.

• Natty has been awarded a Local Hero Child of Courage or Achievement Award for her modelling by Pirate FM.
• Natty has been chosen as one of 50 finalists out of 23,000 entrants into the Face of Kinder Competition.

Well, you get the idea. It's been a head-spinningly busy, fly-by-the-seat-of-your-pants kind of year.

But to have that recognised is... well, I am very proud and it means that my efforts are having an effect.

Downs Side Up now takes up as much time as a full time job, mostly late into the night and when the children are at school. We live in Cornwall, so all that toing and froing to London is a bit of a pain, and we are often out of pocket. I sometimes have to turn things down because I can't fit it all in. We've even talked about moving to enable me to further my work.

I feel I have a duty to carry on, because I can.

And people seem to like listening and reading, so that's a bonus :)

The message is spreading that our children are a wonderful enhancement in life. So essentially all the late nights are worth it. So I'll carry on if you don't mind...

Thank you to everyone who nominated me for this award. I already feel like a winner and am in extraordinary company. I think all 10 finalists should all just have a group hug on the night. And thank you to everyone who has lifted me, inspired me and encouraged me. Those who have helped me through the scary moments when the trolls said unspeakable things about our precious daughter and I nearly gave up through fear. Those who helped spread the word, those who demanded I continue to shine a light into the darkest of shadows.

Thank you. Thank you all.

H x

                                                           

Downs Side Up: A Rubbish Blogger?

I have just worked out that I am a 'rubbish' blogger.

To be honest I didn't know what a blog was when I started Downs Side Up just over a year ago and so I had no bench mark, nothing to compare myself to. I honestly didn't know what I was trying to be, so I just became what I had wanted to see and read when Natty was born. That has always been my only motive.

I found that putting on blinkers (ie not reading other similar blogs) was the only way to find my own voice, say my own thing in my own way, and this often leads me to not read or comment on others' blogs as often as I should. I hope they forgive me.

I probably work in a slightly artistic way: late into the night, I'm fluffy about deadlines and rather disorganised in my email inbox. I work from the heart, the gut feeling, the muse, the tiniest of motivations, a heart-stopping photo. I actually enjoy talking to people on Twitter, possibly a bit too much, but never for gain of followers.

I might promise you an article, and it'll be great, but you might have to remind me to finish it. You might ask me to review a product. I'll turn you down unless I think my readers would actually like it. Money doesn't ever feature for me, although it might make me remember to write your article ;) And actually, when one spends 10 hours a day on one's blog, a little recompense, just to cover one's costs might be prudent in the long run.

But as my blogging journey progressed, I got distracted. Writing sweet, inspirational, informative, powerful blog posts became the skeleton upon which speaking to doctors, teachers, students, parents, training, campaigning in parliament, taking ones clothes off for charity and to celebrate mummy bodies and pushing companies to include models with disabilities became the flesh. Parents told me I was changing their lives and that became the focus.

I have always counted this as being part of blogging properly. I mean blogging is always at the core of something more, right? But still I am a novice blogger. My site is not glossy and I still think SEO is someone in charge of a large company.

Then, along came the awards ceremonies, well the first of the year, the MADS. I was nominated in the MADS and BRITS last year which is a wonderful boost for any writer. Lots of my gavourite bloggers won these awards, others I didn't know before are now an inspiration to me.

But far too distracted by sitting throught the night researching disability abortion law before facing a panel of MPs to read the MADS page I assumed 'nominations' meant just that, and that voting would come later. I sat and proudly smiled at being nominated.... and missed the voting boat.

Should I have been filling my blog with requests for them? I didn't. I actually don't like touting, but I might have asked my Mum and friends to put in a word, you know, to save face :)

@HerMelness recently wrote The Mad World of Blogging Awards, a post about how important it is to celebrate what you have achieved outside of and in addition to these official awards. I won't lie, it would have been nice to go through to the shortlist, to further spread our word and awareness of DS, but I will focus on other personal achievements. Thank you Mel for keeping us on the straight and narrow in Blogland.

Then, suddenly, I heard that there was a new category for the blogger who has made an outstanding contribution and that I had been nominated by parenting expert Sue Atkins. (I've since learnt others have nominated DSU too). I was utterly overwhelmed and very emotional. I am so very very proud to be considered in that light and yes, you can vote (it's confusingly called nominating) and yes, I will put the link here, if only to show you I am not a rubbish, disorganised blogger all the time ;)

CLICK THIS BADGE TO VOTE!

MY URL IS HTTP://WWW.DOWNSSIDEUP.COM

                                                             

THANK YOU X
 :)

Downs Side Up Uncovered - the Shoot

After Kate @kateonthinice who writes the Naked Mum blog persuaded me to join her one naked mum a month drive to celebrate our mummy bodies, I decided to tie it in with World Down Syndrome Day on 21st March, the theme being LOTS OF SOCKS or different socks as we are calling it in our house, for everyone is different.

While I was at it I thought I might as well raise funds as well as awareness, so I am collecting monies for the vital work of Down Syndrome International, the Down's Syndrome Association and the Cornwall Downs Syndrome Support Group.

And so the wheels were set in motion. These things are always organic, I never have an end plan, I just follow my nose. 

The wife of a former employer is a supremely talented and professional photographer Maryna Halton of Photograph by Maryna, who happens to specialise in boudoir photography. Although not the natural Mummy look we were trying to achieve, she was used to snapping naked bodies, putting semi clad women at ease and had 'seen it all before' so to speak. She very kindly offered her skills for free. 

So too did her partner Julie Wieczorek of Angel Face, expert mineral make-up artists on Miss World.

Julie applies make-up to a trembling Hayley

A local film maker also offered his services, and Geoff's video clip of the preparations and why I did it is at the bottom of this page.

Suddenly there was a team involved in Downs Side Up Uncovered. The sponsorship started rolling in and there was no going back. Gulp

As the day dawned and the props had been gathered, the nerves increased. I'd made my reasons for doing the shoot clear in Downs Side Up Uncovered, showing the bodies of mums of children with disabilities are like any other, that I lay my feelings bare in the blog, that I am not just a campaigner and Mum but a woman and wife as well.

The day began, the nerves soon abated, but I was astonished at how emotional I found moments of the day. Tears welled in my eyes. What I hadn't foreseen were the stories of those helping out, the reasons behind why they wanted to help.

I hadn't twigged either, that the last time I had been naked in front of near strangers was at the birth of darling Natalia. My body was remembering. I thought too about the families we support and what the day was all about and the tears pricked more, a kind of pride too I guess.

Then of course there are the emotions associated with getting older. The last time I took a really good look at myself naked was probably about 10 years ago and I didn't have to suck my tummy in then. Now, at 43 years one has to work a bit harder to look effortlessly natural, or maybe it just doesn't matter as much what you look like. Priorities have shifted significantly.

Hayley clings to her trusty dressing gown

And so, we did it. We spent 5 hours, doing different poses and locations. We all felt washed out at the end, nervous to get it right, not offend anyone, to produce artistic, tasteful images that portray the real woman. I haven't seen the pictures yet, Maryna is looking through them now. We'll choose the best and  send one over to Kate for her blog next month. Perhaps we'll reveal the others slowly as the charity funds mount up in the pot. Maybe a newspaper would like to feature one and champion our cause. Who knows. 

For now, here is the first of the behind the scenes pictures of the naked mum that is Hayley Goleniowska.

TO DONATE PLEASE TEXT DSUU47 £AMOUNT TO 70070

OR VISIT MY JUST GIVING SITE  HERE.

WATCH OUR VIDEO CLIP ABOUT HOW THIS PROJECT CAME ABOUT AND MY REASONS FOR DOING IT HERE: 

 

Natty's Big Sister Starts a Blog

Mia is 8, is pretty artistic and loves writing but is reluctant to do homework, so we have channelled her creativities into a blog. 

She's chosen to call it Over 8s. 

She designed the background and chose the fonts and colour schemes.

She is going to write about her favourite recipes, poems, jokes, her love of ponies, her puppy Pippin, her sister Natty and sometimes Down's Syndrome.  She'll show you her pgotography and her animation films. It will all be her own work.

Her very first blog post was a book review of Sam's Top Secret Journal. An adventure story that features a character who has Down's Syndrome, Sam. 

Do pop over and see what you think. It's early days yet, but it's a start. Go Mia, go!

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