Thursday, 28 April 2016

Quality of Life

How’s your life? 

Are you living on Quality Street or in Desperation Alley? 

Was it different last month? Last year? Ten years ago? Do you think it will be different in ten tears time? 

How exactly do we measure quality of life? Is it possible to measure the quality of life of someone else?

When we consider people with disabilities, in Emily’s case, with Down’s syndrome, it would be easy for some who don’t know her to question her quality of life. And of course this argument can be used in an attempt to justify termination of a baby with a disability. People like our old friend Richard Dawkins who I’m sure you’ll remember caused a stir a couple of years ago when he stated:

"If your morality is based, as mine is, on a desire to increase the sum of happiness and reduce suffering, the decision to deliberately give birth to a Down's baby, when you have the choice to abort it early in the pregnancy, might actually be immoral from the point of view of the child's own welfare." - Richard Dawkins
Thankfully, we don’t all have the morality of dear old Rich.

However, The Abortion Act 1967 states that provided a pregnancy has not exceeded its 24th week, an abortion may be carried out if:
  • continuing with the pregnancy would involve a greater risk to the woman's life than ending the pregnancy
  • continuing with the pregnancy would involve a greater risk of injury to the woman's physical or mental health than ending the pregnancy
  • continuing with the pregnancy would involve a greater risk to the physical or mental health of any of the woman's existing children
  • there is a significant risk that the baby would be born with a serious physical or mental disability

There are also a number of rarer situations when the law states an abortion may be carried out after 24 weeks. These include:
  • if it's necessary to save the woman's life
  • to prevent grave permanent injury to the physical or mental health of the pregnant woman
  • if there is substantial risk that the child would be born with serious physical or mental disabilities

So Down’s syndrome falls into this category – serious mental disability. Personally I think that it is way out of date and the narrative of the life of a person with Down’s syndrome is vastly different to 50 years ago, when they weren’t even legally entitled to an education!

The World Health Organisation (WHO) defines Quality of Life as an “individuals’ perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns”.

So ask Emily what her perception of her life is. In fact ask anyone with Down’s syndrome and I think they’ll tell you that their life is pretty darn good. The difference between people with Down’s syndrome and the rest of us is that they actually show the world that they’re having a good time!

Emily loves being part of our family, our community, our church. She loves going to college. She loves having a part time job. She loves going to Zumba with her friend. She loves a gingerbread latte in Costa. She loves having the freedom to catch the bus on her own. She loves giving away some of her money every month to support a child orphan in Uganda - something she did at her own request after seeing an African Children's Choir. She voted in the last election for the party she believed promised to do the most to help people who had cancer. She cares. She loves. She has high expectations and aspirations.

So on the basis of the WHO description it is not possible to determine someone else’s quality of life as it is down to the individuals’ perception.

Consider this scenario, two babies born on the same day, Child A to an affluent middle class professional couple in suburbia, he has blonde hair blue eyes and perfect health. Child B has Down's syndrome. Her mother is a drug addict and B is immediately taken into care.

By now most people will have made a judgement about what those two babies quality of life will be.

However, it turns out A has no time given to him by his busy parents and he rebels, drops out of school, starts drinking, progresses on to drugs which leads to stealing, he loses his job and ends up in and out of prison all his life.

Meanwhile B is fostered and then adopted by loving parents who embrace her into their family, providing for her every step of the way. B goes on to get a good education and got a job in a hair salon. She's now living independently and in her spare time she’s on the speaking circuit, encouraging people of all abilities to make the most of every opportunity in life for you never know where those opportunities will lead.

I wonder which one would say they had a good quality of life. Not for us to judge though. Whilst in prison A repented of his past life spent his time teaching other inmates how to read and write. He’s happy helping others to improve their lives.

It’s not our job to judge others.

I’ll end with a children’s story, I think you’ll like. It encourages us to help others see the potential they have and the “beauty in the broken”.

Leaky Bucket story
There was once a man who lived on a hill and every day he had to go down to the river to collect water. It was a steep climb so to save time he took two buckets which he carried at each end of a pole which he held across his shoulders.

The bucket on the left was shiny and new, the one on the right was old and rusty with a few small holes. Every day the shiny bucket would still be full by the time the man arrived home, while the old rusty bucket was only half full.

The old rusty bucket was sad, “Time to get rid of me – I’m useless” he said.

The shiny, perfect bucket said to the man, “I keep all my water. You must be pleased with me”

(Please do remember this is a children's story and it's perfectly normal for buckets to talk!)

The man stopped, he looked at the two buckets, looked back at his feet and said to the shiny bucket, “You’re right! You do a great job, you do just what I need – I am well pleased with you!”

The shiny bucket smiled. However, the rusty bucket looked sad. “Rusty Bucket”, the man said. This was the moment the rusty bucket thought he was going to be thrown out. “Rusty bucket, every day I endure this is long walk down to the river and what seems like an even longer walk back. A while ago I realised you leaked and so I planted some seeds - if it wasn’t for you leaking I wouldn’t have all these flowers to look at and smell as I walk back. I am delighted with you!”

The rusty bucket looked down – the water which had leaked out of his holes had watered the ground and caused a beautiful pathway of flowers.

You see friends where some see only damage, uselessness and failure, others see wholeness, potential and success. It’s impossible to the measure quality of life in someone else. There is potential and value within all but sometimes we just need to wait for the flowers to grow. 

Saturday, 9 April 2016

I'm not a kid anymore

I wish I’d kept a diary or journal when our children were young. The internet didn’t exist then (how old do I sound!) so there was no blogging, no Instagram, Facebook or Twitter which could be used to capture a moment and record it for posterity. If we wanted to record something it was good old fashioned ink and paper and a camera with 24 shots per roll of film. Nobody took pictures of their dinner from a hundred different angles when you had no way to delete them!

So it’s no surprise that, having not been organised enough to keep a journal, I have forgotten so many stories about all three children until something happens or I see a photo which sparks a memory. That happened this week when I was reading the wonderful blog Downright Joy by the lovely Alison Morley. You should check it out after reading this.

Alison helped me to remember a story from when Emily was about seven or eight. James and Amy, friends from America had come to stay for a time. One day we were travelling up the M1 on our way home. This must have meant we’d been somewhere wild and gorgeous like the Peak District or somewhere exotic and expensive like Meadowhall shopping mall (because you’ve got to show Americans a shopping mall right?).

Over the years Emily has had a few different soft toys with which she has had a special relationship. Around this time The Tweenies were a big hit on TV. No I can’t remember their names, sorry. However, I can name you all of the firemen from Trumpton and tell you how Camberwick Green’s Windy Miller got his name…but that’s another story!

No, back at the turn of the century – there I go sounding all old again – Emily was into The Tweenies and she really liked Bella. Bella was the blue one, this I know because Emily had a Bella doll. She loved Bella and she came everywhere with us. It was never a good day when we couldn’t find Bella to come on a journey. Thankfully on this occasion, Bella had been able to join us…

(Was there a dog called Doodle? A big shaggy St Bernard type thing?...sorry for the interruption - that just came to me)

Anyway…Bella had been with us to Castleton or Dovedale, or perhaps House of Fraser, wherever we’d been I can't remember, but a good day had been had. Amy, our gregarious and ever so lovely American friend, was sat in the back seat chatting with Emily and Bella. They decided (I suspect Amy decided…) to wash Bella’s hair. I have no idea why Bella would need her hair washing in the car going home, especially as we were all out of water and shampoo which meant that this had to be done in the salon of imagination. However, it kept Emily entertained and that was all that mattered.

Of course when one has had one’s hair washed in the car and there’s no towel available, you need to improvise to get it dried. Amy was clever. She spotted we were doing 70 miles per hour and with the air being warm this time of year it could be the fastest hair drier in the world. She wound the window down a little and popped Bella’s head out, just far enough to ensure that her spiky yellow hair blew in the wind to help dry it off.

Disclaimer: Please, please don’t employ this hair drying method with your own children – even in the salon of imagination!

Amy then made the fatal mistake – this could be the one reason she never progressed to having her own salon – she passed Bella back to Emily while the window was still down a little. Emily, being Emily, decided she’d quite like a go at the hairdrying thing herself and proceeded to pop Bella’s head out of the window, closely followed by her arms, legs and body as she tumbled on to the tarmac which was already way down the road!

“Oh no!” shrieked Amy, putting her hands to her head, “I can’t believe she did that!”

The next turn off was a few miles up the road and it was getting dark. There was no way of going back to see if we could find Bella tonight so we headed home with Emily saying “Blew away…she blew away!”

Indeed she did.

The following morning I was up at first light on the Bella rescue mission. I jumped in the car and headed for the motorway. Having got there I scoured the northbound carriageway, whilst travelling south as slowly as I could get away with, trying to remember where we were when this happened. To my amazement I spotted something blue over on the other side, it was only half a mile from the next junction so I rounded the roundabout and headed north. Sue enough I had found Bella – she’d had the good sense to wait on the hard shoulder! I pulled up, fully aware that I was probably committing an offence by stopping for a non-emergency, opened the passenger door, leant out of the car and pulled Bella in.

I set off home, Bella strapped into the passenger seat for safety, with memories of Emily saying “blew away” and gesturing with her hand as though Bella just flew off into the air of her own accord.

I’ve just pulled Bella down from the loft and re-united her with Emily. Emily said “I don’t want her, I’m not a kid anymore” – it’s a bit like Toy Story 3 all over again – but do you know what I’m so proud, so pleased that Emily now sees herself as an adult. She doesn’t need the toys of her childhood, she needs empowering as a young woman to lead the life she wants. And that my friends, is the challenge we have. Those of us with children, whether they have Down's syndrome or not, whether they have any kind of learning disability or not, whether they have passed exams, graduated, learned life skills...or not, each will have dreams, ambitions, hopes for their life as an adult and we must be prepared to release them to be the person they want to be...just don't release them in the way Emily released Bella ok!!

The final irony…Emily is gaining some (ahem) paid work experience in a real hair salon – thankfully her hair drying methods have improved!

Wednesday, 6 April 2016

Turn, turn, turn

You may know a song by The Byrds called Turn, turn, turn. Actually, you’re probably all far too young to remember it unless you heard it on Pick of the Pops – ask your parents to sing it to you! (Ah, if only this were a Vlog I would sing it for you! Alas, you are spared!) It goes like this, “To everything (turn, turn, turn), there is a season (turn, turn, turn) and a time to every purpose under heaven”. It got to number 1 in America.

Ha! You're singing it, I can hear you!
The song was written way back in the 50s by Pete Seeger and is actually based on a Bible passage from the book of Ecclesiastes “There is a time for everything and a season for every activity under heaven, a time to be born and a time to die, a time to plant and a time to uproot”. It continues with more examples but later says “a time to be silent and a time to speak”.

I’ve not written for a while. It’s not that there hasn’t been anything to say – quite the opposite in fact – no, it’s that this has been a season of quiet; a time to be silent. Sometimes we need to have these times, not just to re-charge our batteries but to re-calibrate ourselves, make some adjustments, re-focus, step back, breathe, be refreshed, take a walk in the rain and remember that we’re alive!

So now, here I am writing again; a time to speak up. And it seems there’s much to speak up about when it comes to Emily and matters of Down’s syndrome generally. There’s so much happening in Emily’s life that it’s hard to keep up sometimes. Changes to college education, the Educational, Health and Care Plan, cuts to adult social care which has affected her ability to volunteer at a project she has been working at. Then there are the small matters of adult relationships and other “big people” stuff like how to deal with grief when people die (too much of that already this year). She does amazingly well to adapt to so many different situations and so many changes and challenges.

The world we live in is not at all kind to those who may be vulnerable, especially vulnerable adults. When your kids are small and in education there’s a statutory bubble of protection around them. It provides a framework for the here and now and the coming years, there’s support; strategy. In adulthood much of this is stripped away, leaving our young adults to be tossed around by the waves in a sea of apathy, rejection and dereliction of a duty of care by local authorities and central government.

So it’s time to speak up; time to make some noise, rattle some cages, demand some changes and try to remember to enjoy the journey. Any small victories are ours to share with others and with those who follow along this same path. In the words of George Bernard Shaw:

"This is the joy in life…being used for a purpose recognised by yourself as a mighty one…being a force of Nature instead of a feverish little clod of ailments and grievances complaining that the world will not devote itself to making you happy…I am of the opinion that my life belongs to the whole community and as long as I live it is my privilege to do for it whatever I can. I want to be thoroughly used up when I die. For the harder I work the more I live. I rejoice in life for its own sake. Life is no brief candle to me. It’s a sort of splendid torch which I’ve got to hold up for the moment and I want to make it burn as brightly as possible before handing it on to future generations.”

Thursday, 24 March 2016

Meet Emily

So much has happened already this year, I'm hoping to tell you all about it soon when I can get some time to write.

In the meantime I produced a little video for Down's Syndrome Awareness Week. Hope you like it.

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.



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.