Explaining the Radio Silence: What Have We Been Up To?

Sometimes life rattles by at such a pace doesn't it. I mean really, where does the time go?
There are so very many things in the air at the moment but I just don't seem to be able to find the time to sit here and share them with you over a cup of tea. 
My friend Emma says that she enjoys a little catch up newslettery kind of a post once in a while, so here goes... 

Something for the Weekend 

Read all about it              

We've been busy on the media front. A couple of months ago we were interviewed by The Guardian Weekend Magazine for a big spread about Down's syndrome. The piece has been on hold for a while and I had to promise not to talk to any other publications, (it's hard for me to keep quiet but I did!) but the time has finally come and it should be in this Saturday 17th supplement. 

I'm nervous, I always feel very vulnerable when we go public as a family, but I trust the journalist implicitly. And to be in a paper I often actually buy is quite a novelty. I still won't be reading the comments though.

Changing Perceptions in Sequins and Glitter 

Natty being preened for a glossy photoshoot

Then back in August Natty and I went up to London for a photo shoot for the UK's largest selling glossy magazine. It's for the Christmas edition which comes out next month, so more about that nearer the time...but needless to say I am bursting with pride that they wanted a little model with Down's syndrome within their posh pages.  Natty certainly is changing the face of beauty one smile at a time.

Did I tell you she called a fellow passenger a 'big fat pig' on the train on the way there though? She did. She actually did. She wasn't, she was lovely and brushed it off with a laugh. Lucky.  *Sigh*

Charity Christmas Catalogue 

Mencap have taken two large boxes of our little book for children I Love You Natty to sell in their Christmas Catalogue this year. We are so very excited to be able to reach more young families, support groups and school this way. 

*shameless plug* 
And with profits going to the learning disability charity, what better reason that to buy a copy for someone's stocking this season. 

Training Professionals 

Remember we popped up to Edinburgh in August to make a podcast film with Hazel Powell and the NHS Education for Scotland (NES), and meet nurse and midwife trainers and well as the lead nurse for Scotland? Well, the film is finished and nearly ready to share with the world. We've watched it and hope that it will provide a springboard for discussion in medical professionals' training, particularly in the arena of delivering a diagnoses and supporting new parents. I am quite certain that it's a powerful watch.

Paul and Emma give an inspiring speech

Last week, I headed over to Northampton (which turns out to be incredibly tricky to reach from Cornwall!) for the National Portage Service Annual Conference. I was lucky enough to be able to share our journey and experiences of Portage with other families and professionals, as well as learning so much from the other speakers, including Paul and Emma who share a house together and live independently with support. 

Writing for Change

I've had a couple of very exciting writing projects to get my teeth into as well of late. I was asked to produce a chapter for a book on improving the healthcare of people with a learning disability which is just about finished. Well, it's been submitted but I keep tweaking it and writing to the author with an updated file. 
Must. Leave. Alone. 
Sorry Steve.

The British Medical Journal also asked for an article for doctors working with adults with Down's syndrome. With a massive amount of input from actress Sarah Gordy from Wood for the Trees, and speaker James Hamilton, who both have Down's syndrome, as well as the General Medical Council, the piece is nearly finished. I've really enjoyed working on it and have learnt a great deal in the process.

Oh, and The Department of Health published a little piece about Natty starting primary school as part of their #BestStart0to19 campaign last week. You can read Transition into School: Small Steps for Little Ones with SEN on Viv Bennet's site at here.

Awards 

MAD Blog Awards
I was an emotional wreck after being announced the winner of the MADs Blog Award for Outstanding Contribution. To say I felt over-whelmed was an understatement. My face mostly looked like this all evening: 

Proud, humbled and emotional at the MAD Blog Awards @TomArber

I bumbled through an ad hoc acceptance speech. And cried. A lot. Thank you to everyone who put my name forward. It really means such a lot.

Mumsnet Blogging Awards
Then more excitement. Mumsnet is also a large network of very serious writers and I could never have imagined that Downs Side Up would be chosen from hundreds of entrants as a finalist in the Campaigner category of their blog awards, alongside the simply incredible bloggers Comeback Mum and Complicated Gorgeousness, all winners. 

I actually had a bit of a funny turn when I saw this news but am now looking forward to a group hug with the others at Blogfest, coming up in November. 

Learning Disability Champions
I also found my name listed as a Learning Disability Today Champions finalist. I find this very embarrassing. I have sat on this news for weeks because I can't bear to keep bleating on about awards... new parents landing there don't want to read that. But by the same token I am hugely proud to have been considered by medical professionals and the editors of Magazine Learning Disability Today as a leading parent advocate in the world of LD.

So many of my inspirations and gurus are also listed, from teaching staff, to nurses and self-advocates, as well as fellow bloggers. We are all working together for better understanding and equality for those with a learning disability. So pop over and have your say here. 

********

I think that's it for now. We are off for a family break together shortly and that is the best news of all. Uninterrupted time with our girls. Because at the end of the day, we are just an ordinary family, doing what ordinary families do.

Tiaras, Medics and Monkeys: Let's MiXit for Positive Choices '15

Tiaras, Medics and Monkeys: 

Let's MiXit for Positive Choices '15

Mia and Natty meet the famous inclusive pop group MiXit

"Learning disability is everyone's business," said LDAA nurse Sarah O'Donnell.

"Everyone has equal worth," asserted the brother and sister team Jane and Jonathan as their shared the tragic details of Paul's Legacy with us all.

"Together we are better," Helen Laverty repeated, as she brought together 400 delegates at Positive Choices '15, a learning disability nursing conference held in Cardiff this year.

"This is my story!" shouted inclusive pop group MiXit.

And so went the flavour of the day.

What is Portage and why is it so powerful?

This article first appeared on the Mencap website

I'm a mother to eight-year-old Natty who has Down’s syndrome. Portage helped to give Natty a great start in life – she is flourishing in mainstream school and is also fronting national advertising campaigns as a model.

Portage is a powerful early years service

But people often don't know what portage is, so I just want to highlight why it was such a life-saver for me in the early days.

Anti-bullying Week: Fighting the Statistics with Love

Last week was anti-bullying week 

#antibullyingweek

Mia joins in Lindsy Atkins' @liliesarelike anti-bullying week campaign
with a hand-crafted poster

Have you ever been bullied? 

I have.

Apart from the online trolls that cross my path every once in a while, I remember a more traditional bout of bullying only too well, even though it happened around 40 years ago. 

Five Firsts I will Never Forget for #LDWeek14

Which firsts do you remember from your child's early years? 

First tooth, first haircut, first word? 

Do you keep evidence of them all, the teeth, the lock of hair, the words written in that little red book the Health Visitors give you? I have all of those precious memories from both girls stored away in a tresure box that is bursting at the seams.

Each year Mencap encourage us all to pull together for Learning Disability Week, a time to share information, campaign together and celebrate achievements. This year is is no exception, and the cleverly-chosen theme for #LDweek14 is 'firsts'.

Little did I know when I agreed to take part with a blog post, that it would prove such an emotional experience. Here I sit browsing through old photographs, looking for visual evidence of Natty achieving things for the first time, moments in time captured, and I am reminded just how many of those occasions we wondered if we would ever see. 

We dared not hope for any of them when she was born, for we weren't even sure if she was strong enough to survive in the beginning. Natty has Down's syndrome and was born with a heart condition that left her blue and reliant on oxygen and an incubator in neonatal intensive care for several weeks.

So this exercise has been a stark reminder in not taking your child's achievements for granted, in celebrating even the tiniest of successes, in accepting them for who they are and encouraging them to reach their full potential, whatever that means.

As I sit, with a tear of pride, and a heart that becomes heavy recalling some of the hurdles our precious daughter has faced, a cup of hot tea in hand, I am proud to share with you just a few of our little Natty's memorable firsts:

First Taste of Breast Milk and Kangaroo Care

Natty was quite simply too tired to feed as an infant. Expressed milk was fed to her through a naso-gastric tube for three months after which time she learnt to do it for herself. Her first real accomplishment.

This picture is so significant as it shows her very first taste of breast milk from a syringe at about 3 days old. It was also the first time we tried Kangaroo Care which is skin to skin contact, so enormously beneficial to premature and sick babies.

I recall a cardiac consultant arriving at this moment, scanning machine in tow, and a kindly neonatal nurse firmly asking him to come back in half an hour, for she knew the immense significance of this moment.

Showing Interest in a Toy

With all infants there is a period of time before they learn to smile or take an interest in the adults and things around them, but with Natty I recall this seemingly going on forever. Thinking back I guess I was afraid that she might never engage with her world.

The Portage service were amazing at this stage, and came to the house weekly, bringing toys and ideas for exercises for us to do together. It was also a chance to have a coffee and a chat with a familiar, smily face who understood the period of adjustment we were going through.

This photo shows Natty with a loan toy that was the first thing she ever reached out for and actively chose to play with. It span and wobbled and played a tune from memory, although I might have made that bit up...

Teasing Medical Staff

This photo was taken within hours of Natty coming round from her keyhole heart surgery. She's wearing her 'My heart was fixed...' T shirt.

Those of you who have been through similar with your little ones will understand the phyical weight of worry, the sheer terror of waiting for your child to return to you after such a procedure. The photo takes me straight back there and my chest begins to tighten as a remember every little detail that I had boxed away in my mind.

We went to Bristol Children's Hospital and paced the street while we waited for the call to return, the call to say our youngest child was safe. We were at her side when she awoke and then Daddy held her on his chest while she dozed off the anaesthetic. None of us spoke, too afraid. Wondering if the surgery had worked, if the operation had been a success, hoping there were no ill effects.

Then her surgeon appeared, doing his ward round. Natty looked up, turned to him and blew the most enormous resounding raspberry at him. Our cheeky Natty was back, with vengeance, and oh so cleverly she broke the tension in the room and made us all smile once again.

Writing Her Own Name 

These photos show a proud and happy time for all sorts of reasons, as they were taken when Natty 'graduated' from pre-school at four years old, ready to begin in reception. An anxious time of transition for any parent but it couldn't have been done with more care and attention to detail.

We arrived at the graduation ceremony venue and took our places in the audience. The children came in, sang songs and then took turns to receive their certificates and wear mortar board hats that they had made. My eyes didn't leave Natty for a moment and I strained to see the pattern on her hat. All of a sudden I realised that it was writing... HER writing... her NAME! Tears flooded our proud faces.

Natty had drawn over dots that made up the word NATALIA. It had apparently taken much time and several attempts, but the staff had believed in her and had persevered. WE couldn't thank them enough.

Swimming a Length Unaided

This event needs a blog post all to itself. It was a truly miraculous moment that I didn't capture on film as other children were present in the pool. It happened recently and all I shall say is that involved Natty, who has been swia few strokes at a time with out floatation devices, gatecrashing a swimming lesson. She watched her peers carefully and thoughtfully before launching herself into the water and swimming first a width of perfect front crawl and then, ten minutes later, a whole length.

More tears, and this time they were from the teacher and other parents as well as me!

The Sky is the Limit

What these milestones prove to me is that we must never set limits on what our children will be able to achieve. If the sky is the limit for them, then the firsts will keep on coming...

Hayley Goleniowska: proud Mencap Mumbassador

An Emotional Trip to Number 10 Downing Street

Little did I know that a trip to Number 10 would provide a life-changing insight into the vulnerabilities of those with a learning disability.

Heading to London from Cornwall for Samantha Cameron's reception at Number 10 Downing Street, hosted by Mencap, was a highly emotional event in my blogging career. The thoughts, feelings and emotions so mixed and so many. 

The invitation was delivered by Dave the postman, exactly a week before the event. Dave happened to be the very first person to congratulate us after Natalia's birth, when so many others couldn't find any words. I remember as I stood sobbing in our doorway, the words Down's syndrome sticking in my throat, the post birth shock of diagnosis still raw in my heart. He simply said she was gorgeous and hugged Bob and I. So it was poignant in itself that he should bring the special delivery.

Victim Support for Disablist Hate Crime

Disability/ disablist hate crime must end. The shocking statistics and ways to help create change.

•65,000 cases in the UK per year

•90% of those with a learning disability will experience bullying or harassment at some time

•47% will be assaulted, robbed or spat on and feel unsafe in their own home

•20% will experience regular, continuing harassment

Until recently my only experience of charity Victim Support was following a burglary in our student accomodation. No-one was in, nothing sentimental was taken, and although shaken, we were fine. A nice lady rang from the organisation about a week later to see how we were coping.

That was my only experience, until many years later a dear friend lost her brother in an unprovoked attack. I watched, helpless from the sidelines as she and her family struggled through post traumatic stress disorder. But I saw Victim Support swoop in with understanding, practical support, counselling and someone at the end of a phone day and night. In this terrible situation, the Victim Support Officer was the rock that kept them all going when they thought their lives were over.

I therefore agreed to speak at a local Victim Support conference recently, and I took along my friend, who also bravely shared her experiences to encourage and thank the volunteers present.

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.

Clever Captions Please!

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

(Like you do!) 

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

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

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

My Superheroes for #LDWeek13

superhero  (ˈsuːpəˌhɪərəʊ)
— n  , pl -roes
	characters with superhuman abilities or magical powers, wearing a distinctive costume, and fighting against evil

Learning Disability Week is an annual awareness-raising campaign organised by Mencap. This year it is taking place from 19-25 August 2013 and will celebrate people with a learning disability, their families and supporters by asking the question; who is your real-life superhero? 
I was honoured that Mencap posed this question to me, and here is my answer, in the form of a poem (bear with me, poetry is not one of my superpowers).

Disguised in scrubs and gloves
a uniform of blue or white
or none at all
our superhero morphs

Her face smiles kindly
a wisdom that has seen, 
or with enthusiastic youth
he embraces our fears

'Go and love her'
'An ambassador you will be'
'She'll teach you'
'We will be here'
'You learn how strong you are when there is no other way'

The superhero stops us falling
drowning
going under,
saves a tiny life worth living

He fixes a heart
Helps you walk, talk, see, hear
Makes tea and listens
Congratulates, helps, believes

She paves the way with her example
a role model, 
a patient visionary
the tireless ambassador

Barriers are smashed as
Superheroes include, encourage
proudly teach and expect
they know no stereotype 

Transported into school
hospital, here at home
or online
our hero is there

She wields a gift, an invite
patiently shows flashcards
a scalpel, keyboard or camera
his weapon of choice

Her whistle blows loudly 
arch villains he outs
gently melting our hearts
future change from the start

For our superhero is one
is many
is you

Full of heart, so selfless and true

When I was asked to write about my superhero I wondered where on earth to start. Would I write about  our daughters who have taught us so much? Mia the thoughtful, gentle soul, with a keen sense of right and wrong. A feisty know-it-all, equestrian and dance queen? Natty who melts hearts wherever she goes, and demands a rethink from all she meets about what Down's Syndrome means today. A model fighting for ad inclusion, a loving daughter, an annoying sibling, a team player, a valuable classmate?

Or my unfaltering husband who simply announced that Natty was our daughter and that she would be fine as he proudly held her aloft on the day that she was born? Our wider family who swooped in to help?

The wise midwife who shook me out of my self-pity, the breast feeding support, the trainee doctor who smiled and told us we would be ambassadors for children like Natty when she was 3 days old. I wish I could track him down and tell him how motivating his words were.

But I couldn't miss out the surgeons and doctors that had saved Natty's life. Or the neonatal nurses that cared for her, and nurtured our bond in the early days. The emergency middle of the night medical strangers, the familiar staff on the paediatric wards. Where would we be now without people like that?

And what about the physio and SALT and portage worker who lifted me with tea and encouragement each week in the early difficult days as they gently encouraged Natty to reach her potential.

The teachers and TAs at Pre-school and school who embraced different methods of teaching, who believed in Natty's abilities and spent hours working out what they were and how to nurture them.

To everyone who has seen my worry, tears, frustrations and listened. To those who offered childcare, tea, hugs, meals, advice, resources, some of whom I have never met in the invaluable online support network.

The charities we couldn't have done without, both those who have provided support directly relevent to our family, and those who work for a safer better future for our children.

The fellow ambassadors, the writer, the photographers, the campaigners, the politicians who believe?

And finally the wonderful adults I have met along this journey who have a learning disability. They light the way for us, make our lives more colourful, show us what is possible. They are the role models for our children.

So, a mix of them all is had to be, and my poem depicts a superhero made up of all these people. A multi-facetted superhuman, whose costume and appearance might change but who influence remains constant.

Thank you to our super heroes this Learning Disability Week.
Join in the hashtag #LDWeek13 on Twitter and link up your posts their or in the linky below.

You can follow our exploits @DownsSideUp as well.

Kicking off Learning Disability Week with a vlog about confidence and friendship

I was asked by the Foundation for People with Learning Disabilities to put together a designated blog post for them as part of Mencap's Learning Disability Week #LDWeek13 this year.

I was honoured, and set about thinking how best I could join in with their theme of planning for the future and safeguarding. At 6 years old, Natty's adult life seems far far away, so I decided to chat about the importance of self-help skills, and specifically making friends, which in turn boosts self confidence and self-esteem. Vital commodities for us all.

Armed with a new iMovie Phone App, I decided to try my hand at a vlog, incorporating an interview with Natty and some lovely photos. I warn you, I am very much an amateur, but I do hope you can find a few minutes to sit and enjoy our chat and then join in with the #LDWeek13 celebrations by using the hashtag on Twitter, posting to Mencap at Twitter and Facebook and adding your posts to the linky below.

Watch out for my equally suspect poetry skills on Wednesday, when my #superhero post for Mencap airs!

                          

Collin Brewer Officially Resigns

Two days ago a local radio station rang to say that the Cornwall Council report into Councillor Collin Brewer (You know, the chap who said some disabled babies should be killed at birth and then went on to provide useful analogies with deformed lambs in a subsequent interview), was out along with the Monitoring Officer's recommendations.

In it, Cornwall Council (my local) had censured him to such an extent that he was: 

• Forced to make a formal apology for the 'gross offensiveness of his comments and the significant distress they have caused'.
• Told to recieve media training. (Presumably that would have consisted of 'keep your mouth shut Mr B and don't do any interviews ever.')
• He was not to be allocated a seat on any Council Committee that might deal with any vulnerable members of the community. (I guess that would all of them.)
• He was not to be nominated as a Council Representative for any business that supported vulnerable members of the community. (Again I don't think that would have left him much to do.)
• He was also to be banned from any Council buildings were services to disabled children were provided, managed or commissioned. (don't leave home Collin.)

He resigned verbally at that point. I think one could safely say that he was pushed out.

This morning his official letter of resignation has been received and accepted by Cornwall County Council and the Monitoring Officer issued this statement. Thank you to Cllr A Wallis for confirming this morning. (I seem to recall CB resigning once before, but sincerely hope this is the point of no return now.)

Dear Members

I have today received the formal written confirmation from Councillor Brewer that he has resigned from Cornwall Council with immediate effect.

Members will be advised in due course of the timetable for the Wadebridge East by-election.

Ladies and gentlemen, Collin Brewer has gone.

We have yet to see his letter but I'm sure it will surface in good time.

I guess everyone who has been involved in, or followed this campaign will feel differently on hearing this news. 

My husband for one simply said, "Good. Twit." (I least I'm certain that's what I think I heard him say...) Many will feel a need to celebrate and quite rightly so.

I am, as ever, feeling a range of emotions at the moment. Not one to gloat, celebrating as such doesn't feel right for me. 

When I heard the official news this morning I actually shed a couple of tears. Not of joy as much as relief, but also pent up anger. I parked my car, bought a Chelsea Bun and indulged myself with a stroll along the sun-soaked sea front. I had a couple of errands to do, but all the while I could not feel like celebrating beyond my sugary treat.

I guess I feel sadness that people like Mr Brewer still exist, but worse still are able to cling to powers of office, however minor. For I know he is just one. Back in December we dealt with UKiP's Geoffery Clark. Who next?

I feel cross that he was so utterly arrogant and ignorant that he actually thought he could stay, that his family didn't encourage him to step down. How much simpler would life have been for them all if he had properly apologised after the first comment, and then made amends by working with disability groups. Or simply never making the comments, or having the deep-rooted thoughts that lead to it in the first place of course. And yes he is ill himself, strokes have changed his thinking, perhaps dementia is part of the problem. And in that case he needed protecting from himself. Either way, it should never have come to this and so many could have learnt from his behaviour if he had made the right amends.

I feel frustrated too, that as a member of the public my government have taken away the powers of my local Council to take the steps required to protect the interests of families like mine in these circumstances. It should never have taken all this upset, frustration and resources to reach this point. We now need to tighten up the loopholes in the Localism Act, so this saga is far from completely over. Now is the time to think more broadly.

Then I couldn't help thinking of all the hours that families, Councillors, lawyers and charities have spent, networking and figuring out how to remove this man. There were campaigns, petitions, demonstrations, letters written in the wee small hours, reading into Code of Conduct, interviews with media. It all takes time. I want to thank so many people who were instrumental in bringing about this outcome, the bloggers who wrote from the heart and joined our linky, Mencap for launching an official campaign, human rights contacts I have made along the way who advised and contacted the police, everyone who filled in the ePetition or online complaint form, everyone who organised or attended a gathering to show deep the feelings amongst parents were.

In my small way I have lost sleep, spent energy, emotional and physical, which could have been much more usefully deployed in so many ways. My weapon of choice was my keyboard, and writing was the way I enlisted help and voiced my concerns.

But most of all I shed a tear this morning for the children and their siblings who have a disability and who were old enough to understand all of this, to feel afraid, to feel second class. We cannot erase those feelings overnight, just because Mr Brewer has resigned. 

But, and here is the silver lining to this dark cloud, this shameful episode has brought so many wonderful, like-minded, courageous and selfless campaigners, families and groups together. Without Mr Brewer we would never have pooled our resources, ideas and efforts in quite the same way. So I am going to focus on that, and a future where Brewer's brand of outdated thinking ceases to be.

Let's just hope and pray he finds an ounce of integrity not to stand again in any future elections.

Onward and upward we go. 

Hayley Goleniowska

Downs Side Up

Please feel free to join the Linky below with your posts about Collin Brewer's resignation.

Invite to Number 10 Downing Street

I may have forgotten to mention, well it's been a bit of a week, that I have had an invite to No.10 Downing Street.

There wasn't much time to get hair fixed or a new outfit. The nails will have to do and I've only just found time to Google the folk I will be meeting.

Mencap have invited a few of us, those who work in the Learning Disability field, to meet Samantha Cameron. Yep, the PM's wife.

I will try to tell her of our fears in a polite way, if I get a chance. I might even mention the thorn in Cornwall's side, he of the unmentionable name.

For now... the bag is packed. Passport. Check. Invite. Check. Heels. Check. Reading matter. Check. Smartest frock and jacket I own. Check.

Thank you all for your support and well wishes. 

H x

Can't Care, Won't Care - Lloyd Page

Last year I was honoured to meet campaigner, speaker, writer and journalist Lloyd Page at the British Institute of Learning Disabilities Annual Conference. 

Lloyd is a wonderfully warm man, who helped me greatly with my nerves as I prepared to deliver my keynote speech. He also happens to have a learning disability himself. The experience of meeting Lloyd and other movers and shakers was so life changing and inspirational that I wrote about it here in Innovation, Imagination, Inspiration

Lloyd rang me this morning to let me know that he has an article  published on the Channel 4 blog. It is called Can't Care, Won't Care: Has the NHS really changed? And tackles the subject of Death by Indifference. The startling reality that people with learning disabilities are actually dying in our hospitals simply because their needs are not being understood.

This is a subject I am passionate about, but Lloyd writes about it in the most powerful way imaginable. Please read and share.

British Institute of Learning Disabilities Conference: Downs Side Up Keynote Speech

Innovation, Imagination and Inspiration

I was honoured and proud to be asked to present the closing keynote speech at the annual conference of The British Institute of Learning Disabilities (BILD).

This organisation has been around for 40 years, with a well-respected research base and vast experience in consultancy and an advisory capacity as well as providing evidence in legal cases. They really ought to be a household name in my opinion. And they  are such lovely people too!

I knew the delegates would include care providers, social workers, parents, medical professionals and adults with learning disabilities, so writing my piece became quite a task. Fighting a cold, I sat up til 1am on many consecutive nights, weighing up what to say to make the biggest impact, cover all bases, be the voice of other parents. 

Off I set, swapping wellies for heels, my uniform of jeans for a more credible dress, and leaving my Mummy brain behind, hoping to learn as much from others as I hoped to impart myself. I missed my girls before I had even walked out of the front door. But deep down there was a little secret part of me that was very very excited about the prosect of 2 full nights' undisturbed sleep!

On arrival at the designated hotel after a 6 hour journey, (including a car journey with Keith from BILD, during which I felt like my brain was a sponge, soaking up his experience and immense knowledge of all matters Learning Disability) I hooked up with the fabulous BILD team for dinner. While everyone was immediately welcoming and friendly, 2 faces stood out for me....

Peter and Lloyd (pictured below) swooped forward, shook my hand and impressed me with tales of acting in Great Expectations and East Enders, Speaking for Mencap, training medical professionals and organising the Special Olympics, as well as setting up the nationwide Changing Places scheme providing disability friendly toilet facilities. These trailblaizers both insisted that I sit next to them over dinner. My nerves were gone. Peter and Lloyd had intuitively sensed my vulnerability that evening and chatted easily to make me feel at home.

Peter and Lloyd (pictured below) both happen to have learning disabilities.

Lloyd (left), Hayley from Downs Side Up and Peter (right) at the BILD conference

During the meal Lloyd made my sides ache with his witty one-liners and perfect comedy timing, oh, and his unparalleled ability to eat a goldfish tank-sized bowl of ice-cream and chocolate brownies without drawing breath! Peter made us all smile when he took a nifty detour on his way back from the gents' to join an award ceremony taking place in another room 'because it looked like fun'. Frankly, we could all do with taking a leaf out of Peter's book, and being a little more spontaneous in our lives, stopping to enjoy the nicer things that catch our eye, living in the moment.

All at once I realised that I, disability campaigner and author of Downs Side Up, did not yet lead the inclusive life I strive for. Sadly I was denied the friendship of anyone who was slightly different to me when I was growing up, by a society who prefered to ignore their existence. Unlike Natty's generation who gain as much from her being amongst them as she learns from being included by others, I had missed out on a wonderful alternative perspective on life that friendships with those who are 'differently-abled' brings. 

If I had been brought up in this way, I am certain that Natty's birth would not have caused the ripples it did. Instead of that extra little chomosome being weighed down by the stigma it was piggy-backing, it would have been crystal clear in its transparency, unshrouded by dark, unspoken mystique. My fear and shock would never have had a chance to take hold.

I also met Jim Blair that evening, a consultant learning disability nurse at St George's Hospital. A man whose job it is to help patients with learning disabilities by explaining illnesses, procedures and medication by using pictures, easy to understand vocabulary, patient passports and other means. Jim is, quite simply, one of those professionals that needs cloning and putting into every hospital in the world.

I immediately wanted to rewrite my entire presentation that I had planned for the next afternoon. But it was late, and my head had yet to formulate exactly what it was that I was feeling, exactly how I would change it anyway... 

The day of the conference dawned 

I didn't feel like much breakfast. 

In knew the topic of the first sessions of the morning were going to be difficult to listen to as a parent. They were centred around a review of the Winterbourne View case (Winterbourne was a 'hospital' in which staff were secretly filmed abusing patients by Panorama). I am not naiive, we all know that abuse has and does happen and that is our job to whistleblow, and that organisations such as BILD pick up the pieces, but I was not prepared for how these sessions would make me feel.

As I sat in the front row and listened to the overwhelmingly positive review of investigations, steps and measures to close care facilities that are not up to scratch, standards set for care workers to adhere to my eyes began to prick. I wiped away a couple of tears. But the more I listened, the deeper the shameful travesty of the abuse and neglect became. 

I thought of the times that people have said how lucky Natty is to have a family like us. 

No. 

We are just an ordinary family with all our failings. Natty is more lucky to have been born into the 21st century within a reasonably enlightened society. Elsewhere in the world or at another point in history and her fate would have been very different. The tears then couldn't be stemmed. I let them wash down my face and fall into my lap, thinking of all the other children like Natty, the forgotten adults denied education or healthcare, shunned, ignored, feared, not allowed the social stimulation they thrive on.

The speakers voice again cut through my thoughts and I realised in a heartbeat how grateful I was for the professional angels who swoop in at the darkest of moments in all our lives. The doctors and learning disability nurses, the surgeons, the support groups and charities like BILD, the researchers and Quality Care Controllers. These are the people who make it their life's work to do their best to stop things going bady wrong, and none of us knows when we will need them. Then the tears became those of relief and thanks.

Break time! Coffee and biscuits. (Aaaand breathe...)

Suitably refreshed I sat down again to support Peter, Lloyd, Jim Blair and a precious Mum called Pauline talk about how simple 'reasonable adjustments' in hospital settings can not only make a patient's stay more pleasant, but are actually a requirement in order to save lives, as the Death by Indifference campaign by Mencap set out. I described Pauline later as 'the most amazing' woman, a term I use reservedly as anyone who knows me will attest. She is the most gentle, proud, positive and encouraging person and she has come so very far since the day 31 years ago, as a newly married young woman in her early twenties, she thought the term for her baby was a 'mongrel' as the phrase widely used then was, indeed 'mongol'. This year she watched her son David proudly carry the Paralympic Flame, having been chosen for his many life achievements.

Then Jim Blair put on a short film about Peter. Again an amazing tale of the power of the invisible safety net around us all. But what I didn't know was that Peter had been badly injured in an unprovoked attack last year. I wasn't prepared for that. Please watch Peter's 2 minute film here When the presentation was finished I flew to his side and hugged him. 'That shouldn't have happened to you. I'm so sorry.' I shook with anger. 

Peter had been glassed in the face one afternoon.

The day could not get any more emotional could it? But there was yet much more to learn. I decided to pass on the amazing  interactive workshops after lunch. I had heard so much about and needed to meet Kate, and the day was slipping away fast.

Kate: A BILD employee and inspiration

Kate is another incredible and inspirational woman. An attractive lady in her twenties, wearing a trouser suit and fashionable bobbed haircut, she works at BILD, lives independently with support, has a full social life, her own home and a mortgage. Kate has Down's Syndrome. If Natty can achieve what Kate has achieved I will be one very proud Mummy. Kate told me that her Mum was very nervous when she moved out of the family home, but that she was fine. I guess we Mums do fuss too much sometimes don't we!

The next hour was spent getting increasingly nervous about my presentation whilst mingling with organisers of support groups, care givers and publishers of specialist resources. Again the wealth of expertise, experience and massive support we all have for one another was vast. We are all louder if our voices are heard in unison after all. 

I believe there is no place for individuals who have their own agendas in this world of support, charity and campaign for change, although I am sure they exist.

And so, with this emotional build-up as background, Downs Side Up took to the podium. 

My story felt fluffy in comparison to what had gone before, like the story of a fire crew rescuing a fluffy kitten at the end of a distressing news bulletin. My unremarkable story of how we struggled to come to terms with Natty's extra chromosome in the early days, our shock and fear, in part, enhanced by the negative language used by the health professionals, their 'sorries' and their tears. 
Of the genesis of Downs Side Up as a blog and a wider support network. The story of Natty becoming one of the UKs first clothing models with a disability. But then I realised that by changing attitudes one by one, making small inroads, knocking down walls, opening doors we were creating implications for the wider picture. For perhaps

 "gently changing perceptions of Down's Syndrome 

from with hearts" 

was not only going to prevent other parents from feeling the desperation I, and my husband to a lesser extent, sadly experienced in the early days, and enable them to enjoy all those precious first moments with their newborn. But just perhaps my writing was going to have wider consequences than I imagined. Perhaps it would play its part in preventing future hate crime and abuse, by shining a light brightly into those shadows of ignorance.  

I cannot go back and change the start of my journey as Natty's Mum, nor can I change what has happened in our society's history, but I can join forces with the teams of incredible people who are doing something about BILDing a very different future for those with learning disabilities.

That takes Innovation, Inspiration and Imagination.