Saturday, 16 January 2016

A Call to Arms

Just last week Emily stood in front of a meeting of medical professionals including midwives, junior doctors and consultant pediatricians, and gave some insight as to what her life looks like. Just an ordinary life; an ordinary young woman. But it was a tremendous insight into the life of a young woman with Down’s syndrome.


One of the consultants stated how important it had been as they only ever get involved when there’s a problem. So it can’t be overstated how important it is that medical professionals get to hear about all the things they never get to see – what happens when there isn’t a problem. What happens when it’s just an ordinary day. Or even a good day. Or even a great day. Yes people with Down’s syndrome do have ordinary, good and great days, just like you and me. They also have boring, crap days – just like you and me. 

So now we’ve got the news that the NIPT screening will be offered on the NHS, thus saving many potential miscarriages as invasive tests will not be required for a diagnosis of Down’s syndrome. I welcome this. Anything that saves lives has got to be good in my book.
However, I am sad that actually it won’t save lives. It will mean that the lives of many healthy babies with Down’s syndrome will be lost through termination as parents will not receive balanced information prior to deciding whether to continue with a pregnancy following diagnosis that their baby has Down’s syndrome. The lack of good information about Down's syndrome has been all too evident in the media this week.

This makes me sad.

More than that it makes me mad. I Won’t repeat what I said in A Convenient Lie but come on people, we’re supposed to be an intelligent life form but we go on believing the lie that Down’s syndrome is something which we have to eradicate. The way that information about Down's syndrome is presented at the moment just adds another layer to the lie. Read Emily’s Room and tell me that she doesn’t deserve to live. No, we’re no better than Hitler - the tyrant of Nazi Germany who wanted to create a perfect race by eradicating all that didn’t meet his criteria for life. 

Have we become Hitler? Did he win?

Is the war over? Or does it just look bleak out on the battlefield?

In 1940, when faced with almost inevitable invasion by the might of the German forces who had already overtaken most of Europe, Winston Churchill stated the case for standing up to Hitler. It seemed a hopeless task against overwhelming odds. But Churchill knew he had to act to ensure the survival of our nation.

With apologies to Churchill, let me remind all advocates of people with Down’s syndrome and advocates of truth and justice everywhere, that today we too face a tyrannical enemy – ignorance and misinformation. 

It must be remembered that we are in the preliminary stage of one of the greatest battles in the history of Down's syndrome, that we are in action at many points on social media and through blogging, that we have to be prepared, that the media battle is continuous. I would say to the advocates of Down’s syndrome everywhere, "I have nothing to offer but blood, toil, tears and sweat."

We have before us an ordeal of the most grievous kind. We have before us many, many long months of struggle and of persevering. 

You ask, what is our policy? I will say: It is to wage war - by blog, social media, TV, radio and by speaking in our hospitals and to our politicians - with all our might and with all the strength that God can give us; to wage war against ignorance - a monstrous tyranny, never surpassed in the dark and lamentable catalogue of humanity. That is our policy.

You ask, what is our aim? I can answer in one word: victory; victory at all costs, victory in spite of all opposition, victory, however long and hard the road may be; for without victory, there is no survival for people with Down’s syndrome. Let that be realized; no survival for people with Down’s syndrome, no survival for all that people with Down’s syndrome ask for - acceptance, no survival for the urge and impulse of the ages, that mankind will move forward towards its goal.

But I, as a blogger and Down’s syndrome advocate, take up my task with buoyancy and hope. I feel sure that our cause will not be suffered to fail among men. At this time I feel entitled to claim the aid of all other bloggers and Down’s syndrome advocates, and I say, "Come then, let us go forward together with our united strength”.

We shall go on to the end. We shall fight with crowing confidence and growing strength. We shall defend our children, young people, friends and family who have Down’s syndrome, whatever the cost may be. We shall fight on the beaches, we shall fight in the hospital grounds, we shall fight in the fields and in the streets, we shall fight in the hills; we shall never surrender.


This is no war of chieftains or of princes, of dynasties or of national ambition; it is a war of education and of a just cause. There are vast numbers, not only in this land but in every land, who will render faithful service in this war, but whose names will never be known, whose deeds will never be recorded on blogs, Facebook or Twitter. This is the War of the Unknown Warriors, but let us all strive without failing in faith or in duty, and the dark curse of ignorance will be lifted from our age.



Friday, 8 January 2016

From the horse's mouth

Tell It Right, Start It Right.

You’ve probably heard of it. It’s the accredited training course run by the Down’s Syndrome Association for midwives and other health professionals. There’s a clue in the title as to what it’s all about – delivering the news that your child has Down’s syndrome in the best way possible. 

This is for anyone involved in the process from pre-natal screening through to midwives, junior doctors, consultant paediatricians, health visitors, therapists, etc.
Part of the day includes time for parents to share their story; their experience. This always goes down well and is invaluable for those in the medical profession to get some feedback from the parent’s side.

Today we’ve been involved in Tell it Right, Start it Right training in our local hospital. It’s been great. A room full of people and much banter and learning along the way.

Probably the best part of the day though was when Emily got her chance to talk. Oh yes, as well as having parents speak there’s also room for someone with Down’s syndrome to have their say. With a few photos on screen as visual prompts and me asking some basic questions, Emily shared with the room about her life, what she does, what she likes, etc.

She was fab! Not an ounce of nerves, she just stood there, nonchalantly, with her hands in her pockets and got on with it. When I got to the end of my questions and asked her if there was anything else she’d like to say (expecting her to say “no”) – Emily said “yes” and went on for a bit longer about how fantastic her life is, finished it with “that’s it, thanks for listening” and went off to re-take her seat to rapturous applause.


There really is no better way to tell it, than straight from the horse’s mouth!



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.

Beautiful.

Independent.

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?

Dillon.

Dylan? Bob Dylan? Wow - amazing!

No. Dillon. 

Cara Dillon.

Who?

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.

Stop.

Pause.

Look.

Smile.

Breathe.

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……

BOO!!!

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:

Introduction 
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?


IT’S TIME THE NHS AND MEDICAL PROFESSION WORKED ALONGSIDE PARENTS TO TURN THE LIGHT ON!!




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