Guest Post by Kristian Naylor - Uncle Martin, 50

Kristian is the close friend of a friend, a hardworking single Dad, a gaming expert, a cheeky comedian and the nephew of a man who has Down's Syndrome.

Please read his heartfelt words about his Uncle Martin who is nearly 50, and how times have changed for those with the condition. But have we got our priorities wrong?

Uncle Martin

My Uncle Martin is approaching his 50^th Birthday. He was my grandparents second child, following a gap of almost 10 years after his sister (my mother). They had already started their family later than many at the time following my Grandfather’s enlistment in the Army during WWII. There were no controversial screening programmes back then so they didn’t know he had Downs Syndrome until he was born. 

I don’t know exactly when it was that I became aware that my Uncle had Downs. As a child yes labels do exist, but until you understand them they aren’t how you define something or someone. To me he was always just Uncle Martin. The one who would sit with me for hours watching The Dukes Of Hazzard and Knight Rider, amongst others, and get the same excitement from them as I did. Always picking me up for hugs joining in with whatever game I’d decided to play.

He has not achieved what many would consider great things in his life. He has no qualifications. Has never been the face of a brand or broken down barriers. Has never had a job and he has never lived independently. Aspirations I’m sure many of you reading this will have for your child. Sadly they won’t all achieve them. But does this mean their life will be unfulfilling? That they will not be happy and content? Ask Martin.

He was born in the mid 60’s. A very different time for people with disabilities. Most of his education came from my grandparents at home. He attended little if any mainstream school. Certainly nothing beyond Primary level. His interaction with other children beyond the neighbours was done at groups and centres where all the other children were similarly disabled or were siblings of children with a disability. Into adulthood he attended day centres which were not just about respite for my grandparents. Working alongside other people with disabilities he would normally attend Monday thru Friday, transported to and from the building by mini-bus. From what I understand it was almost like a normal work environment. They would produce jigsaws and similar products that were sold to help raise funds for other activities.  Sadly over the years, government funding for things like this has all but evaporated. He still attends a much more limited version to this day, although it is now only two part days per week.

In late 1988 my Grandfather, who had been providing sole care for Martin since the death of my Grandmother only a couple of years earlier, died suddenly. For a while his older brother who lived close by took Martin in. However as a man of nearly 70 in deteriorating health himself, this could never be a long term solution. My mum was in no position to take him into our home as a single parent with two children under ten. Much as I could see, even then, that the alternatives were limited and not very appealing to her as his sister. 

Thankfully, through a friend’s recommendation, she found a place at a very, very special residential home. It was family run and catered for people with a variety of mental disabilities. He would have his own room and be encouraged to live as independently as he wanted to. Residents were offered the opportunity to take part in the preparation of all of the meals that would be eaten together. In the grounds of the house the owners kept chickens and grew vegetables, which again were activities that everyone could be involved in.

He has lived there now for 24 years, many friends have come, and sadly gone in that time. It very much feels like a family when you visit as familiar faces greet you and ask how you are. He has been very lucky to find such a warm, family orientated environment. Whenever I see him he always has something to tell me about what he’s been doing or what he’s looking forward to doing. He takes great pride in taking part in community events where the home opens it’s doors to the public to sell excess fruit and veg grown in the ever expanding corner of the garden dedicated to that activity. 

Even now his sight is weakening and his legs give him all sorts of discomfort there is always a smile on his face and a practical joke to be played. He doesn’t like it that I’m now the one who picks him up for hugs though...

I’m sure that many of you who read this will be horrified by the thought of your child ending up in a residential home. That there is no way that is something you could/would ever contemplate. My grandparents would certainly have been too. But for me, the years he has lived there have been the happiest and most inclusive of his life. He operates more independently now that I ever believe he would have had he continued to live with family. He comes out every Saturday and spends the day with my mum and now my son, who my mum provides childcare for while I work. I’m proud to say that he, like me, doesn’t see the label. He knows Martin as the one who watches Doctor Who and Transformers with the same excitement as he does. I supposed in that sense Martin has achieved barrier breaking. My son will be more understanding of disabilities as a result of their time together.

So, back to my point. The reality is that despite all the wonderful, positive changes today in how it is handled, not every child born with Downs will achieve everything their parents aspire for them. Certainly I feel that including people born with the condition in mainstream education with support and encouraging them to play whatever part in society they want to is the right thing to do. Who knows what a difference having that opportunity would have made to Martin’s life. But do I think that not having those chances has made his life any less fulfilling and, for want of a better word, ‘happy’? No I do not.

And for me, that last part is the most important. Surely that is everyone’s dream? To be happy. Not just those that are not as able as the majority.

Kristian

Readers' Stories - Katherine Routley

Katherine forwarded this poem, written by her sister when their daughter Megan was born. It certainly brought tears to my eyes, and will yours too...

Mia and Megan

Dearest Megan…. With Love

In September 2011,

A gift from up above,

Was sent down to us from heaven,

To cherish and to love.

You were born quite unexpectedly,

Though a wonderful surprise,

That After 9 long months of waiting,

You now lay before our eyes.

A precious new sister for Mia,

A beautiful new daughter too,

A gift to my wonderful sister

That no one deserves more than you.

A perfect little package,

With 10 fingers and 10 toes,

As small as baby Annabelle!

With a tiny button nose!

We were told that you are special,

Maybe different from the rest,

But of course we knew that already,

Because to us you are the best!

But it wasn’t to be quite that simple,

For what we were about to hear,

Which was every Drs nightmare,

And every parent’s worse fear.

How could it be you’re so poorly?

When you look so perfect and well?

But the Drs knew what they were looking for,

And that’s how that they could tell.

For to them you were showing some tell tale signs,

That’s you carried the 3^rd chromosome,

But to us that didn’t make sense at all,

Did that mean you wouldn’t come home?

Of course we know now, that it didn’t mean that,

And we now know just what it means,

Because Trisomy 21 makes you special,

Due to something in your genes!

And although things weren’t as expected, 

And at first we all felt afraid, 

but who are we to question,

The choice’s that God has made.

For he gave to us an angel, 

so precious and so sweet, 

and we will thank him each and every day, 

for the fact that we all could meet.

Megan, you are our angel,

And you are the love we adore,

You may need us more than ever its true,

But we will certainly need you more.

We will turn our times of sorrow 

Into happy times at last,

The crying and the heartbreak, 

Will soon become memories of the past.

 

We'll look forward to the future, 

and the milestones that it holds, 

we'll battle all the up and downs,

As they each unfold.

You were sent here for a reason, 

it was clear right from the start,

You will be loved forever and ever,

From the bottom of our hearts.

Pioneers for Children with Down's Syndrome

Changing the face of beauty - the models with Down's syndrome

When Natty was born we were all struck by her petite fragility. Her features seemed so prefectly proportioned for a baby. That feeling that she would 'grow into' her ears, that I had noticed when I looked at Mia as an infant, wasn't there. She resembled a perfect little doll.

I began to wonder if anyone else could see that she was different. Was the fact that she had an extra chromosome evident from afar? It didn't look obvious to us, until we looked around and realised that other children had a certain look that was not like Natty's.

Never lose an opportunity of seeing anything that is beautiful, 

for beauty is God's handwriting -- 

a wayside sacrament.
Welcome it in every fair face, in every fair sky, in every flower, 

and thank God for it as a cup of blessing.

- Ralph Waldo Emerson

I was struck by how equally beautiful all children were, just in different ways. Strangers obviously thought the same about Natty, because they used to cross the street to tell us. Maybe there was an element of wanting a closer look at the little baby in the sling, but I always stopped to chat. To each and every one of them. (This is why I am late for everything as people who know me will vouch). I never once got annoyed at people for staring, I drew them in and left them smiling. And they all went home with a slightly different perception of Down's Syndrome.

This is where 'changing perceptions gently from within hearts' all began.

When Natty was about 12 months old, I recall walking past a shop window with her and seeing a small poster in a shop window with a happy family group advertising snuggly fleeces. The girl in the photo had Down's Syndrome. She was about 8 years old and gorgeous. My heart skipped a beat. Never before had I seen a child like Natty represented in advertising. I was so overjoyed, so inspired and so happy to see this young lady treated like any other, that I skipped into the shop and gushed enthusiastically at the staff working there. They were lovely, but probably didn't really understand just how much this symbol of inclusion had meant to me.  The shop was Weird Fish. The year 2008.

Weird Fish were among the first to employ inclusive advertising

I guess I filed that memory away, in the 'How I am Going to Change the World' section of my brain.

Years passed and Natty started school. I had time on my hands to mull over our experiences of parenthood, disability, heart surgery, shock, love, life and our family unit of 4. The blog Downs Side Up was born; a way of sharing, inspiring, and releasing.  This is an excerpt from my very first post in November 2011:

"This is a feeling of wanting to get something much more important, very right from the onset.  Of wanting to create something that will lift spirits, give support, bring people together, raise a smile and encourage. Yet all the while providing practical tips and real solutions for the everyday lives of parents and educators who have a child with Down's Syndrome in their lives."

The blog became the hub of Downs Side Up and spokes began to eminate from its core. The memory of that model in the poster returned and I began researching the subject.

I saw a model in the US working for Nordstrom and Target. (And apparently Next had done the same in the UK, but this passed me by sadly. )

Harvey in the Next campaign

I found a modelling agency in Dublin that specialised in models with Down's Syndrome called I Am Able 2 Model. Their books were full but they were supportive and encouraged me to just write around to companies and agencies asking them if they would like to include Natty in their campaigns. I did this, many of my emails were ignored, some received sweet replies saying that Natty was gorgeous but they couldn't use her and then... bingo... Frugi said yes. 

Shortly afterwards Jojo Maman Bebe, everyone's favourite quality brand, famed for their funky stripes, agreed too. They are inclusive employers and were now keen to be inclusive with their models too. 

Natty and I excitedly hopped on a train to London for the shoot. 6 hours later we arrived, tired but still full of energy, jumped in the waiting car and whizzed round to the venue where Natty immediately began singing Christmas carols (in June!), riding the willow reindeer and shouting 'Shhhhh! Santa's coming!' to the crew. We were in stitches, and what a diva after such a journey. 

The Jojo Maman Bebe outtakes

45 minutes later we were back in the car heading for the station for our return journey home. We arrived safe and sound, exhausted but having spent a quality day together, full of puzzles and films and books and colouring and music. For Natty, the modelling was just a tiny bit of fun in the middle of the day, unaware of the importance of the barrier-busting occasion.

Suddenly we were sucked into a media whirlwind with TV, radio and magazine articles galore.

Natty, model with Down's syndrome 

At the same time another amazing, tireless and determined Mum, Caroline Playle was doing the same thing. Our children both featured in the Jojo Maman Bebe campaigns. Now the world really had to sit up and listen. And listen they did, because her son Seb White has been snapped up by none other than Marks and Spencer for their Christmas campaign! Again the world of media was whipped into a frenzy and everyone was talking about how scrumptious he looked with his reindeer antlers. He was even taken on for their Xmas TV ad!

Now the floodgates are open. Other companies are doing the same. Other parents are confident enough to push their children with disabilities forward for modelling. What I really want to see now is a wheelchair user in a campaign, or a teenager with Down's Syndrome, adults with learning disabilities. 

But we will get there. One step at a time.

I am very proud to have been a mover and a shaker in this shift in society and I thank all the companies willing to stand up and be different. 

This got me thinking about the pioneering parents that have gone before us, those who bravely took their children home from hospital when that was not the 'done thing', those that fought for our children to be firstly educated at all, and then included in mainstream schools if that was what was right for their needs. 

I thank the professionals who research all the latest learning techniques for our children. I thank the doctors who pioneered the heart surgery that saved Natty's life. I thank these parents and professionals from the bottom of my family's collective heart. 

And to those parents of the future, I promise to carry on fighting, along with an army of other passionate Mums, for change, so that your children get an even fairer bite of the cherry of life.

Hayley, Natty's Mum
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