Friday, 12 August 2016

A Glorious Adventure

Emily was born 24 years ago today, on the twelfth of August 1992. The Glorious Twelfth as it’s known.


What have I learned over the past 24 years?

What advice would I give to a parent whose baby is born today?

What are the things I know now that I wish I knew then?

Firstly, and most importantly, the birth of a baby, a new life, is a reason to celebrate! If you’ve just had a baby, Congratulations! If your baby has Down’s syndrome you will probably experience a myriad of emotions, hopes and fears, joy and despair, elation and dejection. This is perfectly normal. However, the main thing is to love your baby with all your heart, soul, mind and strength. Love your baby today and each and every day. Consider today, without letting the cares of tomorrow rob you of this moment as a dusty curtain drawn across a sunlit room.

When any baby is born none of us has any idea about what the future may hold. Will she be an artist? Will he be good at sport like his Dad? Will she be a daydreamer? Who will she marry? Will he understand his place in the world? Will he want to travel the world and see all that I have not been able to see?

The answer is, we don’t know. So it’s important to let them just be who they are one day at a time.

Of course, when your baby has Down’s syndrome your thoughts of tomorrow may be a little different. For us it was, Will she live? Will she be able to have a faith? Could she really understand who God is? Will she read? Will she write? Will she be poorly? Will she be bullied? Will she have friends? How will this affect her sister? Who will look after her when we’ve gone? Could she live on her own?

Right from day one, dark thoughts flood our very being like a river cascading down a waterfall.


Of course, we had no way of knowing what the answers to those questions would be or what was ahead of us. However, twenty four years later I can tell you this (consider me a voice from the future if your child is young) I would not trade this glorious adventure for another. Emily having Down’s syndrome has opened up our world to things we would never have dreamed possible. We’ve had opportunities to do amazing things, we’ve become friends with people we would never have otherwise encountered. Some of these friends are true, loyal, supportive, lovely friends and we have never even met them in the flesh – it sounds crazy but it’s true. We are a genuine community which exists to support, to love and to care for one another.  

Emily loves life! She does! She has learned to grasp opportunities that come her way. Her world is so much bigger than many people with no disability who choose to live a small, secure, safe life. You know, the people who consider an adventure to be switching the central heating off in March instead of April.

Emily reads all the time. She loves reading. She can write. She loves to sing and dance and act. She loves to do musical theatre, not in a special needs group (not that there’s anything wrong with that) but in a mainstream group where she can hold her own with the others. She’s got a part time job working in a hair salon. She has a strong faith, she absolutely loves church and understands who God is. She has friends. She can travel independently on known routes. She has hopes and dreams. She wants to get married. She wants to live away from mum and dad.

She knows that she has Down’s syndrome. And whilst Emily understands what this is and what causes it, she chooses to not let it define her. She knows that she needs additional support but she does not allow that to prevent her from doing the things she wants to do.
Babies grow to be children and children to be adults. No two people are the same whether they have Down’s syndrome or not. So I can’t tell you everything will be ok. There are times of struggle and challenge for us all. Tears of hurt, disappointment, tiredness, fatigue, joy, pain, anguish, hope. Tears of pride. When you see your baby, your child, however old they are, achieve something for the first time. This is the same for all our children, whether they have Down’s syndrome or not.

Emily has a riotous sense of humour. She can be silly but so can I. Mostly though she is sensitive, caring, compassionate, aware, discerning and working hard to live life to the max. She is my inspiration to be a better version of who I am. Rather than the world dragging Emily down, she is raising others up. Society would have us believe that people like Emily are weak. If that is true, I don’t want to be strong for there is a beauty made perfect in weakness. There is acceptance, there is tolerance, there is joy, there is hope, there is peace, there is grace, there is love.

Twenty four years seem to have flown in the blink of an eye. Remember to take time to enjoy your children, your family, your friends. 

Stop. 

Breathe. 

Relax. 

Smile. 

Laugh. 

And remember on the bad days it’s ok to cry, for tears have a healing quality. But don’t live there. Don't allow the worries of the future to permeate your every waking moment. Seek support. Seek those who lift you and they will often not be your family, who may not understand. Families are often the ones we expect to provide the support we need but it's not always the case. You may feel let down. Find a time to sit down and have the conversation where you allow them to speak and for you to listen without interrupting or being defensive. Then switch it round so you get chance to speak. It may take time but you're giving yourself a chance of progress when you agree to listen and to try to understand. It's not always easy but it's worth some effort with those you love.

Finally, surround yourselves with people who “get” you, who love you for who you are, people who support you and who love you unconditionally, just as I know Emily loves me.

I wouldn't trade this life for another. Those who believe Down's syndrome should be screened out of existence are like an ancient people who believed the world to be flat. And the only way this theory was proved wrong was when the brave adventurers left the safety of the known world, the proven and the familiar to seek out that which is unknown, untried, and unfamiliar and they discovered a new world, they plotted a new course and re-drew the map of the world. 

We ARE those adventurers, we need to show the "Down's syndrome denying flat earthers" the bounty of the new world, the REAL world, a world where people with Down's syndrome are educated, pass exams, get jobs, contribute to society and live life to the full. We long to live in a world where they are accepted, included and embraced simply for who they are, not how many chromosomes they have.

The Glorious Twelfth led to a Glorious Adventure. Here’s to a Glorious Future! Happy birthday Emily xxx




Wednesday, 25 May 2016

When tomorrow comes

I’d wanted to see the West End production of Les Miserables for years. The recent film version only increased my longing.

(If you've never seen the film, invite me round, I'll happily watch it again if you provide the popcorn!)

A couple of weeks ago, on a damp Tuesday evening, we happened to be standing outside Buckingham Palace (that’s another story) – all dressed up and nowhere to go. Sheron suggested we pop up to Leicester Square to see if we can pick up a last minute ticket for the show due to start in an hour. So off we popped.




Soon enough we were in the dress circle of the Queens Theatre (where else!), takeaway latte in one hand, box of fruit pastilles in the other – Oh yes people, I really do know how to show a girl a good time!

Right from the start Les Miserables grips you. It grips as a vice grips a piece of timber ready to be planed by a master wood craftsman. Every act, every song another shaving removed. I remained completely entranced, enthralled, involved. Unashamedly I cried pretty much from beginning to end, such is the power of this story.


If you don’t know the story Les Miserables is set 200 years ago in France. It is the story of Jean Valjean, released from 19 years hard labour, he broke parole and spent his life on the run, pursued by his nemesis Inspector Javert. Along the way Valjean receives unexpected kindness and mercy and promises before God to live a better life. Indeed it is the story of Valjean’s redemption and salvation and his determination to extend the same grace and mercy he received, to others.

One night Valjean, having been pursued by Javert for years, had the opportunity to take the lawman’s life. Instead, he gave Javert his life back. Javert, a good man who always sought to do things correctly and justly, could not live with the consequences of receiving such grace; it was alien to all he knew, and subsequently he killed himself. Valjean’s final confession to his adopted daughter of his past life was watched through a lens of tears.
It was everything I’d expected and more.

The finale however, opened the floodgates before everyone rose to their feet, cheered, clapped and roared their appreciation to the amazing cast and musicians.

The finale was so powerful I can still sense how it made me feel as I sit two weeks later typing at a keyboard on a chilly evening in Yorkshire. You see the words of the final song had me wanting to shout Yes! Yes! Yes! Pretty much like Meg Ryan in When Harry Met Sally.

The lyrics are these:

Do you hear the people sing
Lost in the valley of the night
It is the music of a people
Who are climbing to the light

For the wretched of the earth
There is a flame that never dies
Even the darkest night will end
And the sun will rise.

They will live again in freedom
In the garden of the Lord
They will walk behind the plough-share
They will put away the sword
The chain will be broken
And all men will have their reward!

Will you join in our crusade?
Who will be strong and stand with me?
Somewhere beyond the barricade
Is there a world you long to see?
Do you hear the people sing
Say, do you hear the distant drums?
It is the future that they bring
When tomorrow comes!


And right there, through salt stained tears, I cheered. I cheered for the people who are fighting to bring justice for those with Down’s syndrome, and especially for those yet unborn. I sang that last chorus as a rousing anthem for the fantastic parents and families who are fighting to change the way that Down’s syndrome is perceived by others, especially those who deliver the news that “Your baby has Down’s syndrome” and those who would seek to eradicate Down’s syndrome through increased testing, without sharing accurate information
about what Down’s syndrome means in the 21st century.

I sang for my friends, my fellow crusaders who stand strong to overcome the barricades of ignorance; the barriers of discrimination. The world I long to see is one where people with Down’s syndrome are welcomed, accepted, embraced, loved, wanted, included. A world without prejudice, stigma, discrimination, even hate. That’s the future I long to live in when tomorrow comes.

If we don't do something now tomorrow may not come at all for many unborn babies with Down's syndrome. And for those already with us, their lives will be downgraded, they already are downgraded by many, simply because they have a 47th chromosome. The law says they can be terminated at any point up until birth! Babies can survive at 24 weeks which is the cut off point for abortion for those who the world deems "normal". How ironic that we spend billions looking for life on other planets but won't protect that which exists right here on earth. 

It is wrong!

The scientists would say that they are just producing the information and the possibilities and it's up to us as a people to decide how we use that information. Well that's like saying "I'm just building a nuclear facility, you choose if you want to fire it!". There must be an ethical review of abortion in this country. It is wrong that people with Down's syndrome suffer such discrimination in a world where we have learned to tolerate so much yet we have learned to hate so much also.

That's why we fight. That's why we crusade. That's why we sing a song of freedom. That's why we rip apart the barricades. That's why we long for a tomorrow where love triumphs over hate, grace triumphs over law, mercy triumphs over judgement.

When tomorrow comes.

Listen...

Shhhh...

In the distance...

Do you hear the people sing?...

Will you join in our crusade?
Who will be strong and stand with me?
Somewhere beyond the barricade
Is there a world you long to see?
Do you hear the people sing
Say, do you hear the distant drums?
It is the future that they bring
When tomorrow comes!



Join our crusade
*Have your say about the future of ethics and testing for Down's syndrome by completing an anonymous survey for the Nuffield Council on Bioethics. You can complete the survey here.

Saturday, 21 May 2016

I love nature

Today I have a very special guest post from none other than Emily herself! 

We were out walking at a local country park this afternoon and half way round Emily started telling us how much she loves nature. It was brilliant but I had no way of capturing what she was saying. So I asked her to remember this moment and when we got home to write down her thoughts. And she did.

It's by far the best post ever to feature on this blog. It's completely unedited, except for one or two minor spelling corrections. I am as proud as can be. There are no mistakes, scribbles, re-writes, etc in Emily's notebook - these are her thoughts as she thought them.

Let me know what you think. How does it make you feel?




I love nature by Emily Critchlow


I love nature because

I have faith in myself

Joy

Love

Peace

Happyness

Life

Calm

Quiet

And see the beauty in nature is all about building up my life

And fashion of fresh air and freedom

I see the water glistening around me

And I hear myself laughing

And picture this

I feel blessed

That God offer me wonder and beautiful

For me

To open up at the stars and planets and fill me with smiles

And I am perfect with it

It makes me feel proud again

It feels so much and my dreams come true to be me

And anyway I like rainbows


Thank you Lord xx





Friday, 13 May 2016

Bingo & shelly

Seeing a picture of a friend's son at work with her today reminds me of the day that Emily came to work with me. Emily was just 18 and it was school holidays. It was a Tuesday. I know it was Tuesday because in those days part of my weekly work pattern was to go help at a lunch club for the elderly on one of Sheffield’s most difficult estates.


Emily loves old people – what could possibly go wrong?

Although it’s a lunch club, cooking for 30 people means getting there early to peel and cut dozens of potatoes and carrots, set the tables, get the bingo ready (more important than food here in the north) and have a bit of a chit chat with the other volunteers.

Emily did really well. She’s not a natural with a veg peeler but she got stuck in in any way she could.

As the elderly residents from the estate arrived they were delighted to see a new volunteer in the shape of a young 18 year old. Down’s syndrome was nothing new to them as there was another volunteer with Down’s syndrome, Gwynneth, who loved being there. Her main job was serving the dinners after they’d been plated up. Some people liked a standard portion (known as big) and some had a smaller portion (known as small).

You’ll understand.

First up it was bingo. Now I had the dubious pleasure of being bingo caller this particular morning which meant I couldn’t keep a close eye on Emily. Of course this played strongly into Emily’s hand and she milked it for all it was worth. Sitting with the old dears she marked her bingo card as fast as lightning.

“Yes” she whispered as another number was covered.

“Get in!” as another one fell.

 “Shush”, I tried to catch Emily’s attention as we cranked up to play for the full house.

Emily just looked at me with a twinkle in her eye, knowing I was not close enough to do anything about her game-making.

 “Come on! Who’s the daddy?”, followed by a huge “Yes - THANK YOU JESUS - hooray!!!”

Usually they don’t like any noise between numbers but on this occasion they all thought it was funny. I didn’t. Gwynneth looked across at Emily, not amused. Soon enough it was time for dinner.

Gwynneth was a non-nonsense kind of young woman. She’d emerge from the serving hatch with another dinner. “SMALL!!!” she’s shout at the top of her voice. If there wasn’t a quick enough response she’d shout again with greater fervour.

“SMAAAALLLLL!!!!!”

Emily soon caught on.

“BIG”

“BIG”

“SMAAALLLL!!!!”

Shepherds pie followed by apple crumble was soon consumed and we’d normally have a coffee to finish. Except today was somebody’s birthday and she’s brought a bottle of sherry to celebrate.

I was washing the pots before I’d realised what had happened. They’d poured Emily a large one and down it went in one! “Aaahhhh!” followed by lip smacking and “Gorgeous! I love shelly!” said Emily.

Emily was not used to alcohol. She still isn’t. I wasn’t to know what was to follow.
It was soon time to leave. I decided I’d take Emily on to the office for the afternoon – it had been a fun morning, despite the sherry episode. I sat Emily at an empty desk while I got on with checking emails.

“Hey dad!” said Emily, as she delved into an unlocked draw, pulling out a lanyard with a name badge for Will, the CEO’s PA, who was on annual leave. “Look at me – I’m Will”. Emily put Will’s lanyard round her neck.

“Behave!” I gave her something to read as I sat back down to delete more emails.
There then followed one of those moments. You know, those moments where everything happens in slow motion.

Will’s phone rang. Emily, quick as a flash, leaned across the desk to answer it. 

Simultaneously, I jumped to my feet to dash across the few feet between me and Emily. I wasn’t quick enough. “Hello, good afternoon, Emily speaking”, giggled Emily as I tried to wrestle the phone from her hands. I could hear a voice on the other end as Emily was nodding and saying “Yes. Yes. Mmhmm. Yes.”

“Give it to me”

“No”

Oh flip. I’m going to get sacked. The CEO has some very high profile contacts. This could have been the Archbishop of Canterbury for all I knew!

Eventually I wrestled the phone from Emily, apologised to the caller and managed to smooth things out. I then took Emily off to our work cafe where I was due to meet my boss, who is very laid back and loves fun and good times, so I figured a meeting including Emily would be a good idea, despite her increasingly loud and inappropriate for the workplace behaviour!

It got worse. So I quickly got Emily’s coat and drove half an hour home, went through the door, told Emily’s bewildered mum, “I can’t cope – she’s drunk on sherry and I’m going back to work!”.

Emily just stood there grinning.

“Hmmm. I LOVE shelly!”




Wednesday, 4 May 2016

Informed consent

Congratulations!
So pleased!
When are you due?
Amazing!
Aww lovely!
I knew, I just knew!
A boy or a girl?
Do you mind?
Course you don’t
As long as it’s healthy
Right?
As long as you’re both well


Emotions erratic
And this sickness
Who knew?
Ecstatic one minute
Then tearful
Head stuck down the loo
Nursery
Needs painting
In pastels or bold?
This bump
A true miracle
Can’t wait to hold


Visits
Appointments
Check-ups and tests
Routine
Right?
Doctors know best
A problem?
You’re sorry?
You’re not making sense!
Trisomy?
Down’s syndrome?
YOU'RE NOT MAKING SENSE!!!


Tearful
Fearful
What does it mean?
Genetics
Confusing
Explain what it means!
Why did it happen?
Why me?
Why now?
Chance?
Or my fault?
And what happens now?


Choices
Head spinning
Abort? Try again?
Disabled?
What option?
But to try again?
Wait
Don’t be hasty
Show me the life
Of someone
With Down’s syndrome
Before you take this life


A baby
A toddler
Her eyes are so blue
A gymnast
An artist
Amazing - who knew?
OK, not all plain sailing
Health issues
I see...
Delays with some learning
Help needed
I see...


Mainstream education
College
Friends
Exams
Aspirations
Vocations and plans
Talent
Inspiring
Haidresser? For real?
These photo’s
Professional
This kid's a big deal!


Perhaps life
With Down’s syndrome
Is not quite what they say
Health issues...
Challenges...
But there’s much more to weigh
On the scales
Of life
A decision with intent
Needs balanced
Information
To gain informed consent



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!