Showing posts with label WDSD13. Show all posts
Showing posts with label WDSD13. Show all posts

Reader's Story by a teaching assistant

We are featuring a reader's story every day between the middle of Feb and the end of March to celebrate World Down's Syndrome Day 13. We've had so many wonderful celebratory stories and today's is no different.
Sent in by a teaching assistant, bursting with pride and enthusiasm about the benefits of Makaton.
Here is her story about the moment she first saw that signing pay off:


Hi, I met you and Natty a month or two back. 

I thought I would share with you my short story. 

I work in a nursery where a child with Down's Syndrome started, we all learnt some Makaton signing but mainly signed when we sang.

However, one day I was outside with a few children reading some books, then out came our little one with DS. They stood there watching and I started to sign a few words and their face lit up as if to say 'someone else is in my world'.

I can still picture and feel the goosey bumps two years on and still have a lovely relationship with them.

I thought you may like to hear about it as this moment then sparked a whole University essay on Down's Syndrome. 

Anonymous xxx


6% Book Launch on World Down Syndrome Day 13



6%: DOWNS SYNDROME MY PHOTOGRAPHS 
THEIR WORDS BY GRAHAM MILLER


Six Percent: Down Syndrome my photographs their words
Extent: 160 pages Format: Hardcover Publisher: tbc ISBN: tbc
Publish date: March 21st 2013 Category: Health, Parenting, Families
‘I hope it will be an inspiration to people who might find themselves in what they think is an Impossible situation’
Ross Irvine (Jamie’s dad)
‘We know that new parents want to see real families just getting on with life after having a baby with Down’s Syndrome’
Pandora Summerfield, CEO, Downs Syndrome Scotland.
The books title, Six percent, is taken directly from statistics presented by the UK Cytogenetics register which show that of all the pregnancies diagnosed as being Down Syndrome, 6% result in a live birth, 91% are terminated and a further 3% of babies are miscarried, or die at birth.
This book is unusual in that it presents striking black and white photographs with captions derived from interviews, with a number of affected families by one photographer. A number of books already exist which show a very personal view, within one family, while the aim of this book is to show a diverse and balanced perspective across a number of family groups from the viewpoint of someone who knows nothing about the condition. This then reflects the experience of many families who are introduced to Down Syndrome for the first time when they are told that their child has the condition.
Likely to be of interest to expectant and new parents of children with Downs Syndrome, medical professionals and the public at large. Six percent aims to present real images and quotes from families describing their experiences. This includes very personal accounts of thinking around the time of diagnosis and then birth where families describe how they felt and how their views have developed. Some of the captions are shocking while others will prove uplifting.
Many families describe a feeling of shock, a period of adjustment and then acceptance. Those featured have all been determined to share their experiences, so that others can learn from them.
Through Six percent, the photographer and interviewer, Graham Miller, does not seek to take a position as to whether the decision to terminate a pregnancy is justified or not. Instead he seeks to present ‘What I saw and heard - no more no less’. On that basis, it is to be hoped that this book then provides a welcome additional source of information alongside that already available in the public domain which often focuses more on the medical ramifications rather than day to day life.
Graham admits that through this project, in common with his other documentary photography work, he seeks to address the underlying theme of the importance of individuality. ‘When I take photographs of someone affected by disability I see their condition as just one more aspect of them which goes towards creating the whole person. Small, tall, black hair, no hair, young, old and indeed having Down Syndrome are our ‘specifications’ and its society that tries to put us in a box. I pursue ‘humanity without constraint’ and it is my passion that we all do the same one day’.
Six percent will be published on UN World Down Syndrome day alongside a touring exhibition.
All content © Graham Miller 2012 unless stated and must not be reproduced in any form without prior permission 


To see a sample of the book and find out how to pre-order your copy click here.


March 21st Will Never Be The Same Again by Lara Cetrulo Thomas


The next in our daily guest posts is from Lara who writes beautifully and with such grace about her family's journey. What strength and love they show.


March 21st Will Never Be The Same
Lara Cetrulo Thomas


            One year ago, on March 21st, 2012, I got the call I had been dreading.  I knew it was him -- the doctor who would give me the news that would change my life forever.  He had told us, quite unsympathetically, that we would only hear from him “if he had bad news.”  So when the phone rang, and his number popped up, I knew. 

            Later that evening, as my husband and I sat prayerfully and tearfully considering our future with a child with Down syndrome, a sense of peace and calm settled over me.  I started to count my blessings, and realized I had them in abundance.  I had a beautiful family, strong faith, and caring, supportive friends.  I could feel my baby boy moving and stretching and kicking in my ever growing belly.  He was strong.  I could feel it.  I knew he was a fighter.

            I began my research and information gathering in earnest.  I learned everything I could about Down syndrome.  I learned to cull out the often negative, outdated and archaic stereotypes.  I learned to choose doctors who supported our decision to cherish our unborn child, and give him a chance at a good life, and to dismiss those who didn’t.  I learned to lean on the support of so many other mamas who had made this journey before me.  I found comfort in the kindness of complete strangers, through websites and blogs and on-line support groups.  I networked with families in our area who had children of varying ages and abilities with Down syndrome.  I looked at these beautiful kids through new eyes; through the eyes of a mother.  I learned how frustrating it can be to have such little control over what’s happening in your own womb, and yet how preparation for what is to come can be so therapeutic, and can make you feel as if you are reclaiming some control.  I learned who my truest friends were, and how to deal with those whose response to our situation was unintentionally hurtful.  I learned the meaning of true, unconditional love, and the fierce protectiveness one can feel towards her unborn child.  I learned to hear the ugliness in words commonly misused – like the “R” word.  It took on a totally different meaning for me, and I learned that it’s not enough to say you don’t like unkindness, bullying or exclusion of someone different, but that you have to take action to affect change in people’s perception, because now it is personal.

            When Jonathan arrived on July 22nd, 2012, I was unconscious.  He had to be taken by emergency C-section with me under general anesthesia because we had lost his heartbeat.  I remember my last thought as the anesthesia was taking hold – “Please save my baby.”  When I opened my eyes, through my fog, I asked where he was.  Had he made it?  “He’s beautiful,” my husband said, “he’s perfect.”  And in fact he was.  When I finally held him 24 hours later, my heart melted.  His almond-shaped eyes, perfectly pink rosebud lips, button nose and wispy mohawk were so beautiful.  His tiny 4 lb body fit perfectly into my arms.  He was no longer a “diagnosis.”  He was my baby, and his Down syndrome seemed such a small, insignificant part of him.  He was welcomed into our family by his proud parents, a brother and a sister who adore him beyond measure, and a host of other family and friends who have never left our side.  He has grown strong and is smiley and giggly and loves Goodnight Moon and to be tickled under his ribs.  He’s a big fan of sweet potatoes and has a fondness for Elmo.  He hates to be alone, and thrives on the abundance of snuggles he gets every day.  He loves to sit up and is working on perfecting his roll-over skills.  We don’t know exactly what the future holds for Jonathan, but whatever the case, he’ll never have to walk alone.  We will be his staunchest advocates, his fiercest protectors, his loudest cheerleaders, and his biggest fans.

            I’ve heard it said that there are moments which mark your life.  Moments when you realize nothing will ever be the same, and time is divided into two parts – ‘before this, and after this.’  March 21st, 2012, which ironically was World Down Syndrome Day, was our ‘before this, after this’ moment.  As we come upon March 21st, 2013, I reflect on how our life has been ‘after this,’ and I have to say, it’s been pretty darn wonderful.


A Bare Naked Update: Downs Side Up Uncovered

Most of you are aware that just over a week ago I was encouraged by Kate @kateonthinice to join in her naked mum a month campaign.  (January and February are out and they are wonderful!)
The idea being we need to celebrate our bodies, whatever they have been through for they are what made us mummies.


I decided to tie the whole thing up with World Down Syndrome Day on March 21st 2013, raise awareness of the condition, wear the different socks that symbolise the event and tell the world that Mums of kids with disabilities are just like everyone else. Not 'fuddy duddies' as some comediens would have you believe.

Well, I got really excited and suddenly I had a photographer and make up artist donating their services and a date was set in stone.

No turning back.

Then a Just Giving page was started and people donated. Definitely no turning back then.

Then a local film maker donated his time too, to capture the preparations and reasons behind the shoot.

OK, OK. I'll do it!


The day came and went. It was nerve-wracking.
I went on BBC radio talking about it.
The video came out, it was brilliantly done.

Many people donated £2 via a text message, people I have never met.

An elderly neighbour of a former colleague donated £50 because 'she wants to see her money used well before she dies'.

A lady we met on holiday a few years back sent me £200. I guess because she was inspired by Natty.

I can't describe how emotional that feels, the generosity of so many wonderful folk.

Where are the naked photos I hear you cry?

Well this week the photos came in.

Eeeek!

Well now I have a whole new set of emotions to play with, even scarier than doing the shoot...

Dare I? 
Should I?
Is that tooooo much?
Ooouhhh!
Which ones do I share?
What shall we do with them?
Oh gosh, I didn't realise they looked like that in that light!
What will people say?
Is that one offensive?
I really need to do some exercise!
I didn't have to suck my tummy in 20 years ago!
I love that one, but does hubby?
Is he just being polite?
Will I embarrass my kids? (They said no.)


So for now, I'll mull them over. Peek at them every now and again. We have another month until World DS Day and I promise to share at least, well, a few of them then. 
Don't worry, I'll get over my stage fright.




Text DSUU47£amount to 70070 if you'd like to back the Downs Side Up charity fundraiser for Down Syndrome International, Downs Sydnrome Association and our local support group.


"Celebrating our wonderful bodies that birthed our beautiful children."





World Down Syndrome Day Fundraiser



Watch our film to see how and why 

DOWNS SIDE UP UNCOVERED came about.


            


JustGiving - Sponsor me now!
You can give online here


Here are a few behind the scenes shots to give a little flavour of the day. The nerves, the excitement, the giggles...



You can also text DSUU47 £AMOUNT to 70070





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: