Thursday, 3 December 2015

All that matters

Earlier in the autumn some friends of ours decided to renew their wedding vows. It was a beautiful day and better than most weddings I’ve attended.

We first met Gloria and Steve in the mid 90’s after their daughter Yasmin was born with Down’s syndrome. Emily was only two and we have always been happy to go and visit new parents and give them our support and encouragement. We’ve received it back many fold over the years.

Sadly Yasmin died when she was just three years old.

What made the wedding vow renewal day particularly special and poignant was that it was on Yasmin’s 21st birthday. So it was a day of celebration, of remembering, of giving thanks.

This was also a day that Emily would never forget. She had been asked by Gloria and Steve to sing during their service. Not as part of a group or a choir or even a duo. She had been asked to sing a solo, accompanied only by her brother in law on guitar.

No video exists of Emily’s performance. I am usually the first to try to capture things like this on film but this once I wanted to get a quick photo and then sit back and enjoy the moment.
Emily was amazing. She took the microphone, showed no nerves, just stood there and sang beautifully. The church was silent, everyone listening intently to every word. I was so proud. Her rendition of “A thousand years” couldn’t have been better if Christina Perri had been there herself.

"Time stands still
Beauty in all she is
I will be brave
I will not let anything take away
What’s standing in front of me
Every breath
Every hour has come to this”

The words just seemed to perfectly sum up Emily’s opportunity. She received a huge round of applause at the end, calmly raised her arm and gestured towards the happy couple as though saying, “that was for you” and then took her seat as the applause died down.

She looked radiant. In that moment, nobody questioned her ability to tell the time. No-one considered asking her to find the right money to pay for something. Right then there was not a thought to see if she could spell, cook or find her way from home to college. We were not concerned whether she could choose a healthy meal over a burger and chips, whether she could brush her own teeth, ride a bike or swim without gulping half of the water in the pool.

There were no tests to check her understanding, nobody standing over her to make sure she didn't make a mistake, nobody shadowing her every move.

No. Right in that moment Emily was doing what nobody else in the church could do. She was being Emily.



A woman.

To stand there and sing, no words to read from, to humbly choose to direct the applause meant for her elsewhere and to make my friends cry.

Right in that moment she could do everything that really mattered.

Monday, 30 November 2015

First gig

So last night Emily went to her very first music gig.

First one eh? So who would you take your young one to for their first gig? Take That? One Direction? Lil Mix? Adele?

Well I dare say Emily wouldn’t have turned her nose up at any of those. Especially Take That – you want to hear the story about where she wants “Take That” and “Gary Barlow” tattooing…

Perhaps not!!

Yes, this is life with a 23 year old with Down’s syndrome. It’s not dull and it’s never boring!
Now Emily loves music. That’s loves with a capital LOVES LOVES LOVES. She listens to music all the time. She sings Christmas carols in July and rocks out to anything from Pink Floyd to Rihanna, from Billy Joel to Katy Perry. She sings Yellow Submarine with as much gusto as those four lads from Liverpool.

So we were well overdue taking her to see a live music concert. We didn’t plan it out, it just kind of happened. I was looking through something on social media and you know what it’s like when you follow a link to a link and pretty soon you’re nowhere near the place you started. That happened and I happened to see a concert at Sheffield University. Now Emily has talked of going to uni many times and it’s a bit heartbreaking to know that it’s another dream she’s unlikely to realise. So this gave us a chance to take her to university, even for one night, and get her to see some live music at the same time.

So who did we see?


Dylan? Bob Dylan? Wow - amazing!

No. Dillon. 

Cara Dillon.


Cara Dillon. She’s an Irish folk singer with an awesome band. I’ve got to say that we chose the very best gig to take Emily to. My first gig was Genesis in Roundhay Park Leeds back in ‘87. Since then I’ve been blessed to see some pretty awesome acts including Springsteen. Earlier this year I fulfilled a lifetime desire to see Fleetwood Mac. These were awesome, awesome concerts and will live long in the memory.

But Cara Dillon completely blew me away. Blew us away. The best bit was we weren’t sat in row ZZ893 along with 80,000 strangers, we were on the third row from the stage with about 200 others in an intimate and beautiful venue.

From the very first song we were transfixed. Part way through Cara mentioned that she’d seen earlier in the evening that a young woman called Emily was going to be here and asked if she was. (At this stage I confess I did happen to post a picture of Emily eating in a restaurant pre-concert and tag Cara Dillon in to the tweet stating that it was Emily’s first gig.) Following our customary hands up and pointing down to Emily, Cara dedicated the next song to Emily. That was so lovely. What Cara didn’t know was that this song was THE song – the one and only song – that I had played for Emily in advance so she knew who we were going to see!

I thought that was amazing!

Cara Dillon was quite simply stunning. I have not heard a voice as pure as hers. Ever. The musicianship was exemplary. The songs and the arrangements were off the scale. This was music to warm your heart, to soothe your anxious soul, to snuggle up to in front of a cosy fire on a cold winter’s night in the arms of the one you love and know that all is well in the world.

Every song a new favourite. We were captivated. Spellbound. Speechless. Tears often seeking solace further down our faces.

Now before you start thinking that this is a music review, it's not - though I could be convinced to turn it into one – but I do think it’s important that I tell you about the lessons I’m learning in life.

Life with a child with Down’s syndrome, or other learning disabilities for that matter, is not always easy. Yeah, yeah, you’d worked that one out for yourself I know! But it’s important to make sure you do something for you every now and again to help you stay sane. This is not always easy but it is vital. Go book yourself some tickets to a concert, go to a spa, go do your thing, whatever that may be. But do something to help you feel alive.

You are alive.

It's easy to let the months and years slip by without going off to have some fun. We're fortunate that we can take Emily now and know that she's not just putting up with it, she's actually enjoying it. But it wasn't always like that and it may not be for you. So take up those offers of help (if you get them) and don't feel bad about living.

I've read something recently about our desire in life to be to live, to love, to learn and to leave a legacy. I think it's true. But we can't leave that legacy unless we choose to live. Now when I refer to legacy I'm not talking about money we leave when we die, I'm talking about the difference we make in life and what we choose to pass on to others. Our legacy may be simply bringing up our children the best we can, instilling confidence, teaching them to be kind, showing them how to love others who are not so fortunate.

And I watched Emily last night and I learned from her again the power of appreciation. We met Cara after the show and Emily just told her how amazing she was. We so often hold back from encouraging others but I love how there's no pretense with Emily, what you see is what you get and it's always life affirming.

Live. Love. Learn. Leave a legacy.

Oh…and if you ever get the chance to see Cara Dillon, take it and remember it was me that told you!

Em waiting for the start of the show

Emily with Cara Dillon

Thursday, 12 November 2015

It’s the small steps that take us on the journey

Are you in a rush? No I don’t mean about getting your Christmas shopping done. Are you striving to get to the next milestone? Are you desperate to get to where you see other people shouting about where they are? “Hey, look over here! We made it here and it’s great – why are you still over there? Seriously you should try a bit harder; you clearly don’t want it enough!” How we behave on social media is often an extension of who we are at home, only on a much bigger scale.

Now, don’t get me wrong, there are so many people who are achieving great things – Emily included, and I want to celebrate with those who are celebrating. In the world of disability and Down’s syndrome in particularly there is much to celebrate and to be thankful for. People with Down’s syndrome have far more opportunities than at any time in human history.

And with the right kind of support and with encouragement, they’re making something of their lives and it’s wonderful to see and long may it continue. And long may we see the photos and read the articles and rejoice.

But sometimes is it possible that we lose track of what’s real when we see what others are doing. Do you feel under pressure to achieve because that’s all you’re seeing on Facebook and Twitter and Instagram and who knows what else these days? So we take pictures of everything and put a positive spin on it to show we’ve not been left behind. And we kid everyone that we’re doing fine, that everything’s ok, yet inside we’re dying. Inside we’re screaming and hurting and silently we’re crying. (But you don’t get many Facebook Likes when you show a picture like that!)

In feeling that pressure to “keep up”, to reach that milestone, we can miss the most precious moments…

You know some journeys are meant to be taken at a slower pace, with smaller steps. We’ve just come back from the Highlands of Scotland. As we drove those narrow, winding, single-track roads we had no option but to take it slowly. We had to regularly stop so others could pass and they did the same for us. But as we did so we were able to look and to see and to absorb the awesome breath-taking scenery; the glint of light upon the loch, the grandeur of each mountain, the trees dressed regally in hues of autumn.  

So many times we gasped in awe.

We stopped.

Got out of the car.

And looked.

And smiled.

And breathed.

And enjoyed living in that moment.

You can’t do that when you’re living on the motorway doing 80mph all the time. All you’re doing is waiting for the crash.

So friends, you who are parents especially, can I encourage you today to take some time to stop racing to the next milestone. Slow down. Enjoy your children. Enjoy your family. Enjoy the opportunities that come your way and don’t beat yourself up for the things you can’t do, the appointments you’re late for, the meals you burn. Stop apologising for the articles you can’t write, the parties you can’t attend and for the kitchen that looks like a bomb site.






Enjoy being alive in this moment.

Enjoy being you.

Celebrate you.

Celebrate those around you.

It’s the small steps that take us on the journey.

Thursday, 11 June 2015

Who's afraid of the dark?

Children are great about being brave aren’t they? They often seem to have no fear and rush into life and through life with a wanton abandon; living in then moment, without a care in the world. And really a happy childhood should be like that shouldn’t it?

But often at some point in our childhood, we all develop a fear. Something scares us and freaks us out and whenever that thing is viewed, talked of, experienced, it puts a fear in us which is so very irrational but so very real. Spiders, snakes, “monsters” (I love Monsters Inc. don’t you?)….

For me it was clowns. I was two years old, we were on holiday on the Isle of Wight and I remember clown faces clinging to the outer perimeter fence of a funfair. My earliest memory is climbing into my parents bed in a caravan on the Isle of Wight because I was having nightmares over those freaky clowns.

Oh and the Diddy Men…. 

True - I was scared of Ken Dodd’s Diddy Men…..for me, Room 101 would contain Dickie Mint and his Jam Buttie Mines and every clown in town!

But for many children, and on into adulthood, it’s something else, something sinister, something which invades our lives every single day, silently approaching, encroaching with every minute which goes by, keeping us awake when we want to sleep……


Who’s afraid of the dark?

Well, now I mention it, who is afraid of the dark? Really? Are you sure? Darkness is really just the absence of light isn’t it? I seek permission to suggest that actually those who claim to be afraid of the dark are not afraid of the dark at all.

Don’t argue back just yet, let me finish my theorising…

No, let’s go back to Sully & Mike – our favourite monsters in the film Monsters Inc. They used the cover of darkness to slip into a child’s bedroom to scare them and thus obtain the highly prized “scream” to help power their city.

Seriously if you haven’t seen it just where have you been?

Nobody is really scared of the dark; they’re scared of what is lurking under the cover of darkness, that which can't be seen. When we can't see something our imagination replaces the void with what we think it might look like. And the imagination is a powerful, powerful thing. A tool of extreme value and purpose to the writer, the poet, the artist, the musician. It can conjure up the most beautiful of images - the Seychelles - most of you reading this will never have been to The Seychelles but I'd like to suggest that approximately 10 seconds ago you saw something in your imagination which pictured what you think The Seychelles looks like. It's a powerful thing.

But that power can also be destructive. We can imagine people are out to get us just because there was a knock at the door, we can drift off into dark thoughts and moods brought on by a conversation which we've taken out of context and we imagine things are a lot worse than they really are.

So we lie in bed, it’s quiet, it’s still, it’s dark, very dark.

“What was that bang? That creak? Why has the room gone cold? Did you hear that?”

Before we know what’s what we’ve got a mad axe murderer coming up the stairs but we’re frozen to our spot, we let the irrational fear go on. It’s no coincidence that so many panic attacks happen at night. Eventually we either fall asleep or shout for help and someone comes to turn the light on.

So who’s afraid of the dark?

Who’s afraid of Down’s syndrome?

Really? Are you sure? Or is it just that you’re afraid of what’s lurking under the Down’s syndrome covers. Are you afraid of what you don’t know? The darkness? Afraid of what you can’t see? Afraid of the future?

What is your imagination doing? In the darkness, it's conjured up a picture painted by words of negativity, cold, clinical words which you never expected to hear and can't quite comprehend but you know it suddenly feels difficult to breath, you're feeling light-headed and the walls are closing in.

You want to shout for help. You open your mouth but no sound can escape.

It's a powerful thing, the imagination. 

You know what, if there’s going to be pre-natal testing, it’s better that there’s a non-invasive test. Better for mum; better for baby. So hurrah for the new non-invasive pre-natal test.

But (there's always a but and mine's a particularly big one!) we have to be so careful about where a positive diagnosis of Trisomy 21 takes us. Any screening, testing and detecting for Down’s syndrome, or other genetic conditions, must go hand in hand with accurate, balanced, information and education which doesn’t leave parents afraid of the dark.

I skipped over to the NHS website earlier to see what they say about Down’s syndrome. Here’s what I found:

Down's syndrome, also known as Down syndrome, is a genetic condition that typically causes some level of learning disability and characteristic physical features.
Around 775 babies are born with the condition each year in England and Wales.
Many babies born with Down's syndrome are diagnosed with the condition after birth and are likely to have:
·           reduced muscle tone leading to floppiness (hypotonia)
·           eyes that slant upwards and outwards
·           a small mouth with a protruding tongue
·           a flat back of the head
·           a below average weight and length at birth
Although children with Down's syndrome share some common physical characteristics, they do not all look the same. A child with Down's syndrome will look more like their mother, father or other family members than other children with the syndrome.
People with Down's syndrome also vary in personality and ability. Everyone born with Down's syndrome will have a degree of learning disability, but the level of disability will be different for each individual.

Bearing in mind this is an introduction and meant for patients, it’s all a but cold don’t you think? Science wins out over humanity. So what’s the next heading:

Screening for Down’s syndrome (science again)

What causes Down’s syndrome (more science)

Life with Down’s syndrome – oh look boys and girls a little bit of humanity; a snapshot of real life and positivity. A bit late though if you never got this far because the first three sections of cold facts scared you silly (scream gathered, more power for the scientists).

(Yes NHS I’m more than happy to re-write it if you want me to!)

A midwife recently asked me on twitter “but surely in the UK in 2015 we welcome and defend women’s autonomy over their own body?” 

My response would be that in the UK in 2015 we should welcome and defend the rights of everyone to receive balanced, accurate information and education about what having a child with Down’s syndrome really means before being asked to come to any conclusion about whether a pregnancy will continue or not.

Right now, these decisions are being made in the dark, where it’s lonely and scary and horrible and it’s all a bit of a nightmare. Not even any time to shout for help.

The clowns are coming to get you...

The mad axe murderer is near the top of the stairs...

What you going to do?


Monday, 18 May 2015

Never Mind the Politics

Thursday 7th May 2015.

Now that’s a date that many people will remember for a variety of different reasons and yet others will screw their eyes up really tight, count to ten, wish upon a star and hope that it didn’t really happen. However, upon peeping through the cracks between your fingers you realise that yes it really did happen and the Tories have been re-elected.
However, this is no party political blog…..well, not this time.

No, this is about why Thursday 7th May 2015 was a memorable day for Emily. Will she remember the date? No, she’s forgotten it already I’m sure. Will she remember why it’s so memorable for us? No, it was just another day for her.

So why was it a memorable day?

Well, it was the day that Emily got to exercise her democratic right to vote.

Oh that!

Yes, that!

Don’t know why she bothered, what a waste of a vote.

Well, no actually. You see there are very few things which people with a learning disability get to do in absolute equal measure to the rest of us. I must admit I’m half surprised that people with disabilities are allowed a full vote all to themselves and don’t have it watered down somehow. Oh wait, that will probably come in with the various reforms over the next five years….

But actually, when you think about it, there really are not that many things that people with Down’s syndrome and other learning disabilities get to do with the same measure as anyone else. There is so much made of equal rights etc. but in reality we play at equal rights much of the time.

Yes, of course you can have an education (we just reserve the right to only give you the support we think you need and not the support you actually need).

Yes, of course you can have free health care (as long as we are in control of what we deem to be in your best interests, taking into account cost of treatment and perception of how it might benefit you and society as a whole).

Yes, of course you can get a job (but we won’t make it easy for you and we’ll make sure that you lose any benefits you might have been entitled to so you will be no better off).

Yes, of course you can vote.

Yes, of course you can vote. What? Where’s the catch? Where’s the hidden agenda with a whisper behind the back of your hand?

Well actually yes, people with learning disabilities can vote. So we thought why the heck not! So we downloaded the simplified manifestos from the Mencap website and told Emily what we were going to do.

Now when I say simplified manifestos, they were still too detailed to hold Emily’s interest (or mine) for more than a few minutes, so we played headlines. We looked at the headlines for Labour, Conservative, Lib Dems and UKIP. Yes I know, but UKIP have a very strong presence in Rotherham due to the very badly managed Labour dominated council making a right old mess of things, giving UKIP more than a foothold on the council. The lunatics have taken over the asylum. Hard to tell. The lunatics were always there in my opinion. Thank God for our fab local Labour MP’s especially Sarah Champion. Champion by name. Champion by nature. No, it’s not a political blog post….

Anyway, thank the Lord….I mean, anyway, Emily, in her infinite wisdom got rid of the Lib Dems and UKIP straight away. For Emily the hot topic was the NHS and, particularly, care for those with cancer.

(She is THE most compassionate soul on the planet in my opinion.)

So it was red or blue. Labour vs. The Tories. Which would she choose? (Oh, and before you say anything The Green Party were not contending in our constituency. The English Democrats were but even the looneys think that they’re a bit too far off the scale!

She chose. And off we went to Emily’s old primary school to cast our votes.

I must confess I went expecting a fight when we got there. I expected someone to say Emily couldn’t vote or she’d need some help or something else ridiculous. I went first, got my voting form and waited for Emily who handed in her polling card, confirmed her name and was given her voting form. I went in one booth, Emily in another. She took her time and I just finished mine in time to see Emily carefully put her X in the box she said she was going to vote for (we practiced that bit at home). And then she went over and posted it in the box just like it was a letter going to Santa when she was seven.

And there it is. A vote cast in the General Election on Thursday 7th May 2015 by Emily on exactly the same terms as anyone else voting. Result! Never mind the politics!

Sorry? Who did she vote for?

I told you….this is not a party political blog post!

Emily, on her way in at the Polling Station

The vote is cast

Sunday, 3 May 2015

The Best of Times

“It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity, it was the season of Light, it was the season of Darkness, it was the spring of hope, it was the winter of despair, we had everything before us, we had nothing before us.”

A Tale of Two Cities by Charles Dickens.

Looking back over the past 25 years, this could be how I would sum up being a parent, with seasons of joy and hope mixed with seasons of challenge and despair. I’m not just talking from the perspective of having a child, however old that child may be, with special needs, but let me tell you dear reader, that being a parent is hard work, no matter how many chromosomes your child may have, no matter how well they communicate, no matter what their academic capacity or the value attributed to them by others.

With each of my children I can point to some time in their life and say it was the best of times. These are times when you can climb any mountain, you walk on air, you smell the sweet scent of every flower you brush past on your walk to school without having to bend down. Life just has an indescribable aroma of joy which lifts you, warms you, hugs you and enables you to overcome anything at all that gets in your way. We had everything before us.

But then there are the worst of times. Dark seasons of the soul. Disappointment. Discouragement. Challenge after challenge and every time you think you’ve negotiated your way along this rocky path, you stumble or you’re tripped or the path just seems to disappear in front of you and your feet slip as the scree gives way leaving you clinging to a rocky outcrop on a cliff edge. We had nothing before us.

When you have a child with special needs it can often seem like the best of times and the worst of times all at the same time. We’ve recently had Emily’s annual review at college. If you read my previous post you’ll have gleaned a small amount of the frustration that I feel about that. There will need to be more work done by college, by us and by Emily to find appropriate solutions to some of the challenges here. Spilling my frustration over these pages will do nothing to change the situation and saves you from having to mop up after me. Suffice to say, it feels like the worst of times.

Then on Thursday evening Emily was invited to take part in S-Factor by the special school she used to attend. S-Factor is a talent show for the school’s pupils. Every year it has me laughing, crying, applauding; it really is the best show you could ever see. This year is the 10th anniversary so the school held a reunion concert for former pupils, a fantastic idea and so inclusive of the staff, who consider former pupils still as their own.

When I arrived in the hall to take my seat I saw so many of Emily’s friends. I went across to say hi and got hugs, high fives, handshakes, fist bumps, it was brilliant. There were 27 acts all eagerly anticipating their moment on stage, their time in the spotlight, their chance to shine.

When you’re going through a difficult time or you’ve had a rubbish day at work; when you’re feeling a little bit sorry for yourself and inclined towards inviting yourself to a one-person pity party there is nothing better than going to an event like this. These young people all have learning disabilities of some sort but have a zest for life which is immeasurable. They have a way of encouraging one another which is entirely natural, not forced, not said in the hope of getting a compliment in return but just being nice to one another. It really is most humbling.

Nat, a young man with Down’s syndrome, took his turn to recreate a magical performance from a few years ago. He played the drums, with no accompaniment and was absolutely fantastic. The joy on his face was tangible. He played a drum solo like you’ve never seen and got a huge ovation.

Andy, dressed in a wonderful red and white striped blazer and matching boater, had us mesmerised with Supercalifragilisticexpialidocious from Mary Poppins, remembering every word with perfect timing.

Simon *swallows hard to remove lump from throat* Simon sang Sting’s  Fields of Gold. I watched through tears, in the same way I am typing now, as Simon serenaded the audience with this beautiful song, his broad smile never leaving his face from the first note til last. I will never forget that performance.

There was a group who were their own version of the Ting Tings, singing That’s not my Name. With Stephen, now aged 25 and pushing seven feet tall, on lead vocals, they were all dressed in psychedelic outfits which were as colourful as their personalities. They had the audience clapping and laughing, especially at the end of the song as Stephen sang out repeatedly That’s Not My Name he turned around, bent over and stitched onto his bright pink shorts were the words “My Name is Stephen” – just wonderful comedy.

The evening finished with everyone in tears again as Laura sang I dreamed a Dream from Les Miserables. This was followed by everyone invited on stage to sing Proud – the school theme song. Rapturous applause followed.


Oh yes, Emily. What can I say? Emily loves performing. She is completely at home on a stage and so we are looking at how we can incorporate this into her future life. 

Versatile as ever she went from being a raucous, brash, punk rocking, hip thrusting Pink singing So What! to a demure, pretty dress wearing Christina Perri singing A Thousand Years. She makes me so proud.

So when it feels like the worst of times it can also feel like the best of times. I wouldn’t have missed this evening for anything. I actually feel sorry for those who never get chance to attend anything like this - it really does put life into perspective. The age of incredulity blinds so many to the rich depth, joy, colour and beauty that people with learning disabilities bring to our selfish world. 

Thursday, 30 April 2015

Bold assumption

I’ve not written for a while, it’s been a busy time in many ways, not least of which is thinking about Emily’s future. What happens after college? What does she want to do? Where does her future lie? Where is the support for whatever she wants to do? I’ve got to say that after Emily’s recent annual review at college I have many more questions than I had before and many more than I can list here. 

As we’re still in a process of discernment I don’t think it appropriate to divulge too much here and now but I will say this:

Forgive my bold assumption as we met around the table
I had this strange idea that the people there were able
To meet the needs of Emily, or at least you’d catch the vision
Of life when schoolings ended; her hopes and dreams; ambition

Forgive my disappointment when the dawn of truth awoke me
From my state of false-hope dreaming when your crass ignorance poked me
As a wounded bear defends her cub I had to bear my teeth
Through my blood-thirsty anger I hid the pain beneath

Forgive my crazy thinking that you cared about your students
I see your job is just a paycheck, but don’t you think it prudent
To have some self-respect; to dignify your position
Yet you wonder why parents around the world are preaching sedition

Forgive me as I take the reigns, you’ve really lost control
You’re in the world of special needs but you’ve lost sight of the goal
To allow each person the opportunity to reach their full potential
You squeeze square pegs into round holes, have you heard of differential?

Forgive my expectation that you’d heard of person-centred
Annual reviews are just your way of leaving me tormented
You’ve got no plan, no notes, no clue – just going through the motions
This is her life, her hopes, her dreams – don’t mess with her emotions

Forgive my bold assumption as we met around the table
I had this strange idea that the people there were able
To meet the needs of Emily, or at least you’d catch the vision
Of life when schoolings ended; her hopes and dreams; ambition


Tuesday, 7 April 2015

A Convenient Lie

I loved Down’s Syndrome Awareness Week this year and in particular World Down Syndrome Day on 21st March. It was fantastic to see so much positive awareness about Down’s syndrome across so many social media channels, in print and on television. The Empire State Building in New York City was illuminated in honour of World Down Syndrome Day, as was the Millennium Bridge in Gateshead, Blackpool Tower, CN Tower, Toronto, Canada as well as the homes of the Governors of New Jersey and North Carolina, USA, to name but a few.

There were amazing stories of what people with Down’s syndrome can do, wonderful videos we all watched and cried over probably, we read blogs and nodded and agreed and showed our support. And wasn’t it fantastic to see Prince Harry and some of the England Rugby Union Squad showing their support by joining thousands of people all over the world rocking their “lots of socks”!

What a buzz – we’re making progress at last right?

Yet all through that wonderful week something was bothering me. I sensed an elephant in the room. It was an elephant which didn’t crop up during that week, not that I saw anyway, yet it was the one thing which I really wanted to shout and scream about; the “abortion” elephant.

Over the last week or so there has been media coverage regarding a new non-invasive test for Down’s syndrome which is particularly accurate. It is being hailed as a huge step forward and will no doubt see a reduction in the number of live births of a baby with Down’s syndrome to such an extent that it could be all but eradicated.

Switch off the lights at the Empire State Building, those illuminations are not needed anymore. Prince Harry please remove those socks, never to wear them again. Science has found a way to eradicate Down’s syndrome so society can breathe a huge sigh of relief, the scourge of Down’s syndrome has finally been defeated and everyone can go about their business, we’ll consign Trisomy 21 to the history books along with smallpox, dinosaurs and Hitler!

Yet thousands of us, tens of thousands, parents, families, carers, know that people with Down’s syndrome are people first; not a label, not a condition, not a genetic mutation – people. If we were to let nature run its course without intervention there would, no doubt, be many thousands of people born in the future with an additional copy of chromosome 21 and they would get as much from life as the people we know and the people we celebrated during Down’s Syndrome Awareness Week. People. Like you. Like me.

Oh but the scientists tell us they’re not people until they’re born. Until then they’re just a foetus and that means we can do anything we like with them. They have no rights. It is better to rid the earth of people with disabilities. Well excuse me, if this were to be tried in court, I could call thousands of people who would testify otherwise. People who, if they had known, may well have considered a termination rather than proceed with their pregnancy. But people who now shudder at that thought. People who say they are better people because of what they have been through. People who have given more to society because of having a child with Down’s syndrome. Oh, and of course, let us not forget all the people with Down’s syndrome themselves. Yes those people who one day took a breath of air and sucked in their human rights.

Yet even now 90% of unborn babies (yes babies) detected in the womb to have Down’s syndrome never draw that first breath. Why?

The answer is not as simple as the parents, or the mother, decided to terminate the pregnancy, though obviously they did. But the decision is based upon pressure and bullying and an unbalanced and biased argument. In fact, often not even an argument, but an assumption that a termination is the only option. I don’t blame any parent for making the decisions they do. I respect their decision but it HAS to be based on the truth and not a lie and right now I do not believe that is the case. By not educating the general public, and scared parents, about just how amazing people with Down’s syndrome are somebody somewhere retains the power to eradicate Down’s syndrome.

So the elephant in the room for me, or perhaps the (extinct) woolly mammoth in the room would be more appropriate in the circumstances, is where is this pressure to eradicate Down’s syndrome coming from?

Is it coming from the scientists? Are they pressurising the medical profession somehow to use this knowledge in such a way that it sates their desire to push the boundaries of the known world?

Is it coming from government? Is it a desire to reduce the financial burden to the welfare state of people with disabilities?

Is it from within the medical profession itself? Doctors, consultants, nurses, midwives? Is there an inherent desire to play God, not just healing the sick but deciding who should live and who should die? I love the NHS and have friends who work there. I don’t want to alienate anyone but I do want to understand how this all works. Who is pulling the strings? Whose tune are we all dancing to? Whose agenda are we following? Talk to me. Let me know.

Or is it something else? Is it coming from somewhere else? If so, where? Who? Why?

I confess I do not know the answer. But somebody does. Whoever you are I say to you, if you’re going to play God with our lives then make yourself known to us. Make yourself or yourselves known to ME! I want to meet you. I want to understand your motives; to understand just what drives your sick, indulgent, deluded fantasy. It seems to me that what you are doing is similar to what the Nazis were doing during the Second World War.

Come out, come out wherever you are!

You see friends, science will not stop at Down’s syndrome. Oh you can bet right now that somewhere in some laboratory there are people working hard at decoding other “disabilities”. They are not there yet but when they find a way of detecting blindness, deafness, autistic spectrum disorder (yes, these may not be caused by the presence or otherwise of a chromosome but that won’t stop them) or any other disability, there will be the same pressure exerted to terminate. Unfortunately for people with Down’s syndrome, the decoding of the syndrome has given scientists something to play with.

However, just because someone invented a gun, doesn’t mean we have to use it to kill people. Likewise, having the science to detect Down’s syndrome does not mean that we should use it to kill unborn babies, just because we can. As with all aspects of our lives we must balance our understanding and our knowledge with our actions.

People with Down’s syndrome have had a raw deal. They were not legally obliged to an education until the early 1970s and having had a daughter with Down’s syndrome in the education system since 1996 I can categorically confirm that our society continues to fail people with Down’s syndrome by not meeting their needs adequately. All of this means that we have not seen the best of people with Down’s syndrome yet! But over the past 20 years we have seen people with Down’s syndrome make huge strides in qualifications, jobs, independence, relationships – pretty much everything the rest of us do. So why have they been demonised? Because there are too many people who still relate to people with Down’s syndrome as they were before they were allowed an education.

I have friends with a child with Down’s syndrome who will say until their very last breath leaves their body, that having that child, yes that child with Down’s syndrome, has made them a better person and they would not choose an alternative way of living even if they could. And I stand alongside them in this.

When will these people who have set themselves up as a god realise that people with Down’s syndrome make a huge contribution to society? When will they realise that every life is valuable and worth far more than any of us see from the limited perspective of a man-made label?

So whoever you are, show yourself. Stop hiding, you coward.

But you won’t. You can’t. You dare not admit that you might, just might, be wrong. So instead of taking an opportunity to change the world and face up to an uncomfortable truth you will continue to sacrifice the innocent and hide behind a convenient lie.