Saturday, 13 December 2014

Emily's Christmas List

Emily is a list girl. She is very much like her mother and elder sister in this. Emily will write pages and pages of lists, or perhaps I should say pages and pages of a list. One list at a time, nearly always longer than Santa’s list for all the good boys and girls. Her pen often churns out ink faster than the vidiprinter churns out the football scores on a Saturday afternoon.

Last year, Emily’s Christmas List contained such treasures as a nest, a carpet, Ant & Dec and some spinning plates – a fairly eclectic collection of wishes I’m sure you’ll agree. So I waited in eager anticipation of this year’s Christmas list. What could she be after this time? – a newly seeded lawn maybe?, a pair of curtains? or perhaps a cutting from Demis Roussos’s beard? Whatever it is, how on earth could she top last year’s wish list?

Well the truth is she couldn’t. She didn’t even try. After reading the list I was strangely disappointed. It looked like the Christmas list for any other 22 year old (if 22 year olds made written lists that is). Well, perhaps not, any other 22 year old but it was generally quite sensible. I mean, which young lady doesn’t want perfume, a new dress and some diamonds? (Hands up if that's you!)

And this has troubled me for a week or two. Why am I disappointed that my beautiful, yet slightly crazy, girl has written a Christmas list which is more in line with her age?*

*(At this stage I should put a disclaimer in and say that, whilst it is largely sensible, there are one or two exceptions, some of it is not age appropriate, some of it is just plain bonkers, but that’s what makes Emily Emily. Yes Emily has a learning disability; but she also has a wacky, crazy, endearing sense of humour. She wants to make people laugh. And she’s very good at it. She’s always lived in a house full of loony tunes so it’s perfectly natural that she would want to follow suit. No somewhere along the way the line between learning disability and a crazy sense of humour has become very blurred.)

Oh dear, I shouldn’t go off on tangents, I always struggle to find my way back. 
*makes a note to leave a paper trail for next time*

Yes, yes, I was wondering why wasn’t I? Why was I feeling disappointed with Emily’s list this year?  Why did I consider asking Emily to write it again? The answer is simple. I was hoping that by having a list to rival 2013 it would prove how crazy Emily is. I was thinking that if I publish this list it wouldn’t be as funny as last year; that it might be letting other people down. Now that really is crazy. I was treating it as though she was writing it for my benefit so I could say “look at my girl – nutty or what?” etc.

However, I completely missed the point that Emily is growing up. She’s not trying to make me laugh with the list, it’s just what’s in her head and on her mind. And if that means she is being entirely sensible, or slightly bonkers, that’s fine. She has nothing to prove; nobody to impress. She doesn’t care whether anyone else reads the list or whether they find it funny. She’s just being herself. And that’s the best any of us can be; ourselves.

So here it is, unapologetically Emily's own random thoughts and wishes (with my comments added in brackets):

Emily’s Christmas list 2014

Perfume
New phone (she’s great at texting and I’m proud to say makes every effort to spell every word correctly)
New book of fairy tales (we all want a fairy tale life)
New hair band
Bikini
Poster of B*witched (she’s a 90’s chic – what can I say? C'est la vie)
New waist band (yes, on many Christmas lists this year – lol)
Hair colour
Kesha outfit (I admit I had to look this up – I had no idea who Kesha is…hope Santa does)
New boy (DO NOT let on to Jono!)
Toilet seat that plays the Eastenders theme tune when you sit on it (this is her joker card - make of it what you will but I think she may be on to something)
New DVD
New CD’s
Clothes
Chocolate (obviously)
Dance mat
New dance DVD
Some new pants (nice)
New gift card for New Look
A new leather jacket (she’s turning expensive)
Frozen gift set
A Girl Talk magazine
New girly dress
Cocoa butter body cream (she’s turning into a woman)
Diamonds (Gulp - she’s turned VERY expensive!)
A new mini skirt
A new lavatory pass (this is something they use at college to use the loo during class apparently - the mind boggles what happened to the old pass!)


And there you have it for another year. What’s on your list this Christmas?


Friday, 5 December 2014

Diagnosis

Thunder in the distance
And it’s rolling down the track
I got a one way ticket
I won’t be coming back

At least you’re here beside me
As I’m standing in the rain
So come with me and climb on board
My runaway train

Now we’re speeding up, better hold on tight, just can’t see a thing, is it day or night?
This is not the way it was supposed to be, I’ve read all the books, so how come this is me?

Lightning strikes all around us
We’ve not been here before
Don’t know where we’re going
I’m falling through the floor

All the plans I’d made are useless
There’s darkness in my pain
I need your love to help me
Stop this runaway train

Now we’re speeding up, better hold on tight, just can’t see a thing, is it day or night?
This is not the way it was supposed to be, I’ve read all the books, so how come this is me?
This is way too fast, I was not prepared, what’s the future hold, now I’m really scared
Now I’m nowhere near where I’m supposed to be, I’m not in control of my destiny

As I slide down my rainbow
I don’t see a pot of gold
This bouquet of broken promises
Is all I got to hold

Did you hear a distant crying?
There’s a baby over there
I think she’s calling out to me
She’s all alone and scared

My head is undecided
But my heart is overwhelmed
In the midst of my denial
I forget about myself

Through the storm I see tomorrow
I don’t need yesterday
Sunrise casts a shadow
Is this a brand new day

Now we’re slowing down down, it’s gonna be ok, still can’t see the light, but night’s becoming day
Who knows the way it’s supposed to be, I didn’t read the book of twenty one and three
This is not so bad, with you at my side, let’s enjoy the view, let’s enjoy the ride

This must be the way it was supposed to be, now I'm not afraid of twenty one and three




Wednesday, 3 December 2014

The Gift of Confidence

How is it December already? I mean, seriously, where on earth has this year gone? I keep thinking, I’ll get round to writing about when Emily was a bridesmaid soon, and yet, here we are eight months later and it’s still unwritten. So here goes….


Emily’s big sister Laura decided she wanted to marry a handsome young man from America and that their wedding was going to be held across the water in North Carolina. Not a bad place to start. North Carolina is a land of simple beauty and it is simply beautiful; the long sandy beaches of the Outer Banks, the majestic wonderment of the Great Smoky Mountains, countless lakes and forests and the kindest, most hospitable people you could ever wish to meet. 

Emily had never been a bridesmaid before so she was thrilled to be a key part of Laura’s big day. She took the rehearsal extremely seriously and knew exactly where she was supposed to be at any given moment. Not only that, she knew where everyone else was supposed to be too!

On the day itself Emily was faultless. She looked stunning; every inch the sensible, mature adult and the bridesmaid all the groomsmen wanted to walk down the aisle next to. In then end she walked with the grooms brother who is significantly taller than Emily. They looked like little and large or Mick Fleetwood with Samantha Fox for anyone who can remember the Brit Awards from a couple of years ago. Ok so it was more than a couple of years ago but, like I said, where does the time go?

The reception was very informal. It was a lovely, very warm Spring day. We were in a small rustic barn on a beautiful golf course – fairy lights and candles, hay bales and burlap. Speeches were short and appropriate…until my speech that is. Not one to miss an opportunity to say a few words I decided that my speech could be a little bit different. So I invited Emily up to the front, to take the microphone and say what was on her heart.

“Hi everyone! Do you wanna build a snowman?” she began to sing. She’d picked up that someone earlier had mentioned Frozen in their speech so Emily figured it was a great way to get people laughing. Clever.

Emily then went on to deliver what was the most beautiful wedding speech I have ever heard in my life. She had no notes, no preparation, no gags looked up on the internet, no rude jokes, crude statements or carefully crafted stories. Just Emily being Emily, saying what was on her heart. She thanked everyone for turning up. She thanked Laura’s husband Mac, “I want to thank Mac…..I love you Mac…..you’re the best brother in law I ever had!”

Everyone was laughing or crying or both. She was in no rush to give up her place in the spotlight. She went on and on. It was delightful and serendipitous in that it was an off the cuff moment, unplanned but charming and made the day even more special. I was the proudest Dad that day. My first born daughter married, happy, stunningly beautiful. Proud Dad. Emily though, had shown something that so many people today do not possess – confidence. She was confident to stand on her own two feet. Confident to stand in front of a crowd, some of whom she didn’t know. Confident to take a microphone, hold it to her mouth and begin to talk, knowing that every word was being amplified around the barn. Confident to say what was on her heart. Confident to open up, be vulnerable in the right kind of way. Confident to say aloud the words “I love you”. Confident to be who she is and not who she thinks other people want to see.

Proud Dad.

In all our trials and tribulations, in all our chores and challenges, when the days seem long and the nights even longer, remember that everything you are doing is helping to define the person your young one is and who they are going to be. So my encouragement to you is this; create a space where young people with Down’s syndrome can have a go; a safe space; a space where if they don’t get it quite right, it’s ok. Create opportunities for them to try new things. Give them the freedom to explore. Allow an amount of measured risk. Give them a voice. Allow them to speak. Let them be who they were created to be. Give them the gift of confidence.

Now don't get me wrong, there are unfamiliar circumstances in which Emily struggles. If you read my recent post One of those days you will remember that Emily is undergoing independent travel training and she is not confident in this area, especially as the evenings draw in. Confidence is gained in different areas of our lives at different times. It's something we all have to make an effort to grow into. It's also something we can help others to learn.

The gift of confidence is one of the greatest gifts we, as parents and teachers, can bestow upon our children. Maybe then we will begin to learn from them how we may begin to apply it to our own lives.  







Friday, 28 November 2014

The Miracle of the Moment

Black Friday. The day when greedy stores pile it high and sell it cheap to people who can’t afford to buy things they don’t really need. If you joined the scrum and managed to get a bargain, that’s great but I can’t help feel sorry for the people who’ve been trampled on, pushed and bullied out of the way. There’s something about this day that’s very unsettling. It brings out the very worst in human nature. It’s consumerism gone mad and quite frankly I was glad to be working and away from it all.


By contrast it seems to me that people with Down’s syndrome bring out the very best in human nature. The simple things in life suddenly become much more important, more tangible, more real.

As I type I’m listening….no that’s not true…. as I type I can hear Emily singing at the top of her voice to the Christmas songs she’s listening to in her headphones. To the discerning vocal coach there may be one or two pitching issues but to me it’s just delightful;  the sweet sound of someone living life to the full. Emily really doesn’t care whether Shakin’ Stevens is able to sing with the same nasal tones that she specialises in. Neither has she the slightest interest whether Boney M can manage to keep to her immaculate timing. She’s belting it out and loving life, right here, right now. A smile draws across my face. It’s such a lovely thing to be reminded of the simple pleasures of life.

I love that about people with Down’s syndrome; the ability to live in the moment. To be totally and completely in the moment. Who cares about tomorrow? Now is where it’s at. And whilst you might say it’s an ignorance of the truth or a failure to acknowledge what’s going on in the world around, I really do think it’s the sweet innocence of life. I wish I could live in that moment. I hope I learn to live in the moment more, rather than worrying what’s happening tomorrow, next week, next month or next year.

That said, I am a much nicer person for having Emily in my life, and for knowing so many other people who have Down’s syndrome, and their fantastic families. To me it doesn’t matter whether I’ve met them in person or chatted through social media, I’ve met some wonderful people who have enriched my life and continue to do so.

As I walked in the city on my way home from work this evening, I was thinking how blessed I am to be part of this amazing local and online global family. I passed a guy busking. He’s there every day rain or shine wearing a red sparkly cowboy hat, tapping a tambourine and singing just as beautifully as Emily. He also has a learning disability. I smiled and thought of a way to bless him at Christmas. Would I have done that before I knew Emily and joined this amazing family? Probably not. That thought alone made every step of a drizzly November evening stroll through the city centre a much better way of spending Black Friday; working out how I can be a blessing to other people.

I also remembered a great song which sums up everything that Black Friday is not; giving something away to help someone else. I receive so much from Emily it’s only right that I give something back, isn’t it?

You can watch the video here.

What if we all just give this Christmas away
If there’s love in your heart, don’t let it stay there
Give this Christmas away
And your life will be changed by the gift you receive
When you give this Christmas away

Maybe, just maybe, the simple pleasures of life are worth far more than anything the shops were selling today. Let's learn to live in the moment.


Emily? She’s now watching I’m a Celebrity… she’s totally in love with Ant & Dec – I think it’s because they’re about her height! Watch out Jono!



Friday, 21 November 2014

The Road to Progress

Once upon a time there were three trolls that lived under a bridge. Their names were Ignorance, Intolerance and Indifference. The three trolls were very stubborn. They refused to let anyone pass over their bridge, knowing that the road to Progress passed through the towns of Education, Awareness, Compassion and Discovery.

The trolls would do anything to stop anyone from travelling along the road. They would use all kinds of tricks – lies dressed up as truth, bigotry dressed up as scientific knowledge and so on and so forth. Often Indifference would invite so many of his friends along to just stand on the bridge, going in neither one direction nor the other, that nobody could actually pass, in fact nobody could see that the road led anywhere at all.

So many times weary travellers would get as far as the bridge, be deceived by the tricks of the three trolls and turn back. Time and again, the same travellers would arrive here, only to be thwarted. Every time their energy decreased. This was the road upon which Motivation had been lost more times than anywhere else. It seemed that one moment the sun was shining but the next there was a thick fog, where any traveller could lose all sense of direction and purpose. Indeed the road to Progress seemed to be a very hard road to navigate.

One day two new friends were travelling along the road and there they met a third standing at a crossroads wondering which way to turn. “Where are you going?” they asked. “I’m not sure” said the third traveller. “I had intended to keep going along the road to Progress but I keep being stopped by Intolerance and Ignorance. Every time I end up back here down the road at Frustration or sometimes I wallow in Discouragement – places I’ve been to many times before.”

“Why don’t you come with us?” they said. “My name is Hope and this is Expectation – what’s your name?”

“Aspiration” said the third traveller. "I really want to get on the road to Progress but just when I get passed Ignorance and I get passed Intolerance, I just can’t overcome Indifference."

“I know what you mean” said Hope. Indifference is the greatest enemy of anyone on the road to Progress. I’ve met so many people along this road and they all say how Ignorance can be challenged and beaten by Understanding, Intolerance can be defeated by the twins Grace and Forgiveness but they all say how hard it is to get beyond Indifference.”

So the three friends set off together – they’d only just met but it seemed like they’d known each other forever. Along the way they met others who joined them on their journey – their names were Encouragement, Strength, Determination, Courage and Tenacity. With every step Love was bonding the travellers together. Hope was shining in each of their eyes. Expectation seemed to have grown beyond all possibility. Determination and Tenacity just kept on going no matter what they encountered. Courage had enough cloaks to cover everyone’s fears. These friends, this army marched on together. Every small step seemed like a leap forward.

As they approached the bridge Aspiration chuckled. He could already see that Future was in the distance on the other side of the bridge, along with Possibility and Potential. Their pace quickened. The friends ran towards the bridge. Ignorance and Intolerance were soon overwhelmed. Indifference and his legion of followers wandered around aimlessly not caring one way or the other where they went. They formed what appeared to be an impregnable barrier. The friends kept bouncing off Indifference and his army. Surely there would be no way to get through. The fight went on and on all day and all night until Determination and Tenacity along with Encouragement and Persistence opened up the way for the friends to storm passed the all of the trolls to the other side.

The battle was won, for now. It wasn’t long Wisdom and Discernment whispered in the ears of Perspective to pass on to the friends that the road to Progress has many bridges, many trolls, many twists and turns and bumps and diversions. Sometimes the climb is so steep you lose your momentum and start to slip back. Sometimes the way is so slippy you lose control.

But as long as the friends moved forward together they knew they could endure and even learn to enjoy the journey on the road to Progress.







Tuesday, 18 November 2014

It's okay for you to cry

I'm not really sure who this is for but I do believe there's somebody out there that needs to hear this right now.

Is it you that needs to hear these words?
It’s okay for you to cry
There’s no need for excuses
Or to tell the reason why
For there’s strength in your weakness
And there’s healing in your tears
Don’t be afraid to open up
And let go of your fears

It’s alright that it’s not alright
The days are long and hard
The nights are never ending
You’re always on your guard
But know my friend you’re not alone
I’m here to hold your hand
When you’re feeling weak and helpless
I’ll give you strength to stand

It’s okay that you’re not feeling brave
There’s courage here for two
When your heart is broken; you’re overwhelmed
I’m always here for you
This season that you’re in will pass
There are brighter days to come
But know for now how much you’re loved

You’re one amazing Mum!



Friday, 14 November 2014

One of those days

What happened to you on Tuesday? How about last Thursday? Or maybe 3 weeks ago? What did you do at the weekend? There are so many days we can’t recall. The I’m-just-getting-through-life-days. Routine. Run of the mill. Soon-forgotten days.

Then there are the days that linger. The days we might always remember. Special days. Exciting days. Terrible days. Days of celebration. Days of grieving. Days memorable for a specific reason, feeling, occasion. Today was one of those days.

It started off quite ordinarily, except that Laura wanted picking up to be taken to the doctor’s so I drove the two miles to her house, picked my way through the melee of cars as mum’s hurried their little ones into school and off we set to the doctor’s surgery.

Now the route took us within a hundred yards or so of our house and as we drove down the lane, through puddles and splashes and driving rain, I noticed a short huddled figure walking with purpose along the footpath. It was a particularly miserable grey day. The kind of day that makes you want to stay home and do some baking or sit down in front of a crackling fire with a good book and a mug of hot chocolate. Dressed in such gloom South Yorkshire does not put on a good show. I’m sure a Friday morning could never look quite so dull and dreary in the south of our green and pleasant land - Morwenstow, Devizes or Upton Snodsbury would turn their noses up at the mere suggestion. No, we seem to have a shade of grey that doesn’t exist on any colour chart anywhere else in the country. But I digress….

“Emily!” I shouted as I tapped Laura several times, “Emily, Emily….it’s Emily” By now Laura was wondering what the heck was going on. She nearly choked on the crumpets she’d sneaked into the car to scoff on the journey. I couldn’t get my words out. “Laura, Emily!” Sure enough, the figure walking up the path at the side of a busy road, was Emily.

Alone.

All alone.

Emily alone!

There’s nobody with her!

Hello!!!

In that moment my world seemed to freeze. My mouth went dry. My heart began to race. We were already 50 yards passed…..now a hundred. I couldn’t just stop, we were on a busy road with traffic right behind. And I shouldn’t want to stop. This was part of Emily’s travel training. There would be an occupational therapist nearby keeping an eye on her from a distance. Wouldn’t there?

“You’re not used to seeing that are you Dad!” Laura said.

“I’ve NEVER seen that” I replied, “in 22 years I’ve never seen that” and I must confess it was horrible. I dropped Laura at the doctor’s surgery and then drove back to where I knew Emily would be meeting her guide. Nobody there. I drove further and they were already together, on the way to the bus stop. Relief! Phew! Heart still pounding. But such a relief.

You see, Emily is so very capable in so many ways. She’s great at speaking, writing, dancing, singing, acting. She’s also really good at being grumpy, selfish, eating things not good for her and many other things besides. She’s particularly good at forgiving; making the first move to be friends after a fall out. And she can light up a room with a smile.

But she’s never been independent. She’s always been reliant on others. So when we heard of other people with Down’s syndrome having a door key, letting themselves in and out of the house, walking independently, catching a bus and making their own way to school at just 14 years of age we couldn’t quite believe it. I’m sure we’ve probably been part of the problem, limiting her instead of allowing a freedom to discover. But above all I have wanted to ensure that Emily is protected, that’s a natural part of being a parent. Finding the balance between protection and freedom is so hard for any parent with any child, but when the child has a learning disability? Really hard. And yes we’ve probably been over protective. But I’m not going to beat myself up over that!

So this day, Friday 14th November 2014, this day will be a day I shall never forget. This was the day I saw Emily taking her first real steps towards independence. There are many more steps still to come. Many more challenges lay ahead but we shall take one day at a time; we shall meet one challenge at a time. We shall celebrate when things go well and we shall learn lessons when things don’t go quite as we had planned. However, I know that Emily is capable of so much. She has a lot of self-belief and determination. She’s an adult; a woman.


I’m learning just as much as Emily through this and I’ve so much yet to discover. The greatest fear I have is learning to trust and let her go.