Wednesday, 31 December 2014

Footprints

(Rat-a-tat-tat)

“Hello? Oh…..2015!!! Is it really that time already? I'm not quite ready....

Hi, yes of course you can…….come on in, let me take your coat……sit down……...no, there’s no need to take your shoes off……are you staying long? ………Oh, really?.……..Better take your shoes off………If I’d known I’d have tidied up. You don’t mind me just getting on while you’re here do you? There’s so much to do. I remember telling your old friend 2014 the same thing about this time last year………What happened to her by the way? 2014? ……….Couldn’t take the pace? Unable to cope with change? …………….Well she certainly left the place in a bit of a mess, what with her Christmas parties and all…..shame she couldn’t stay to welcome in the New Year……….”

Happy New Year! Can you believe it’s already 2015? 15 years since we said goodbye to the 20th century and welcomed in the dawn of a new millennium? Each year that passes seems to be packed with so much happening that it’s difficult to keep up – am I the only one who feels like they’re running on a treadmill, putting in loads of effort and using copious amounts of energy yet getting nowhere? Probably not.

Each year holds good things – moments, days, seasons, which we wished we could hold on to forever and never let go. Sometimes they’re just the small victories of getting to an appointment on time or a holiday where the weather stayed fine. Sometimes, they’re the seemingly huge victories where justice is done, getting a child into the school you want them to attend or finally receiving the benefits you’re entitled to but have never been able to access before.

However, each year also holds its challenges. Sometimes the challenge and the victory are related, intertwined even. Sometimes the challenge appears to have the better of us, we feel like we are a failure and we stop and we weep. And that's ok. But we never give up ….because every time we get back up again, every time we dry our tears, we overcome those feelings and we begin to live like we are already victorious before the battle is even won and that's a great attitude to keep. 

What will 2015 hold for your family…… for your situation…..for your challenge…..for you?

I went for a walk last week with Emily. We didn’t go far, just up the field next to our home. It’s not somewhere we go usually but it just looked so beautiful dressed in snow (and Emily didn’t want to go far – home bird that she is). So off we toddled. It was a lovely cold, crisp, sunny day; the kind of day where your breath freezes on your lips. A glad-to-be-alive day! The snow had met a particularly sharp frost the previous night, which created a crystal carpet of sheer beauty. Everywhere we looked the sun caught these crystals and the refracted light made it look like a diamond studded landscape. All those years as children we spent making Christmas cards, dabbing bits of glue all over the front and pouring silver glitter over it until it was completely covered, before shaking it off to reveal a glittery picture. Well here we were walking in our very own picture created just for us.

As we reached the top of the hill I looked back and saw Emily walking just behind me. Then it hit me. I guess I needed the snow to give me a visual point of reference. Emily had made it to the top of the hill, not because she was walking in my footsteps. No…she had made her own way. She had trod her own path. Her footprints were very evident. This is Emily’s life. She walks her own path through life. In this town, in her own way, she is a pioneer. Emily achieves things that others have not achieved eg. she is the only person with Down’s syndrome in her musical theatre school of well over a hundred and can draw a tear as she signs the lyrics whilst someone else sings Over the Rainbow.

She is the person who has pioneered and continues to pioneer in other ways regarding her education. You know, being a pioneer is not an easy path to tread. You've got nobody else to follow. It's like the old explorers who set off on an adventure and literally drew the map as they went. In the world of disability, especially Down's syndrome, there's still an awful lot of map drawing to be done. 

As Emily’s Dad, I will always be there, as will her Mum, to show her the way, to walk alongside, to guide and to encourage, but ultimately it is Emily who walks her life out. They are her footprints, it’s her achievement when she gets to the top of the hill, she has her very own challenges, her very own disappointments and her very own victories.

Amazing, don’t you think, that when something like the snow comes along to cover up and conceal what is familiar and recognised, at the same time something is revealed which is equally familiar yet not always recognised or acknowledged. I feel a little like John Newton, the slave trader, who wrote the hymn Amazing Grace - "I once was lost but now am found, was blind but now I see".

Whatever 2015 holds for you and your family I pray that it is a year of rich blessing, unmerited favour, amazing grace, incredible progress, joy, abundance, prosperity and growth; a year where strangleholds are broken, strongholds are torn down, barriers are removed, boundaries are re-drawn; a year of health where you and your family flourish and thrive. May this be a year where we all recognise the potential within each one of us and then do all we can to release, and fulfill, that potential. May it be a year where more and more opportunities arise for people with Down’s syndrome, and other learning disabilities, to enable them to fulfill their potential and to be free to be who they are. May we help them, and release them, to walk their own path and to make their indelible mark upon this earth with the footprints only they can make.

Before you know it, 2015 will be putting her shoes back on and closing the door behind her. What kind of story will she tell, I wonder……?






Monday, 29 December 2014

Christmas Reflections

"And so to winter at last we head, its crystal carpet once more we tread..."

I have always loved snow. I love watching it fall. In an instant I am transported back to my childhood, hoping that it will be heavy enough to be able to go out to play, to build a snowman, to throw snowballs, to walk and hear that unique crunch you never hear at any other time. I love the way snow transforms the most desolate of landscapes into something beautiful; magical almost. And, as I’ve got older, I’ve grown to love the way an unexpected snowstorm can change our day, put on hold our plans, cause everything to become still.


Silent.

Well not quite everything. For those of us with families at home, snow can cause chaos. It can mean we are unable to take our car out which is usually inconvenient, especially as we get down to the last six pints of milk and two loaves of bread and immediately begin to panic about how we will survive another 24 hours!

(what is it with the milk and bread panic shopping?)

And I’ve always loved Christmas. I love what it means, as a Christian it’s an important time of year, the celebration of the birth of my saviour. But I’ve always loved the way that Christmas makes me feel. Christmas has a unique spirit that is not evident at any other time of the year. It’s hard to capture it in a sentence but I’m sure you know what I mean.

Yet for many who have children with additional needs, Christmas can be a particularly stressful time of year. I know it has been for us over the years. As a younger child, Emily was not particularly interested in opening her gifts. Once the presents were opened Emily was usually far more interested in the wrapping paper or cardboard boxes than ever she was with the contents. And more often than not she would spend most of Christmas Day up in her room playing with her “old” toys, watching her “old” DVD’s, uninterested in anything that Santa has brought. Many times we tried to coax her back downstairs to look at her toys.

Quite stressful.

It was such a relief when we came to the realisation that the best thing to do was to leave her to enjoy Christmas her way, not our way!

To get snow at Christmas this year was truly magical. The car journey home from Emily's Nana’s house was not especially enjoyable, especially as we had our new baby granddaughter with us. However, once we were home and safe and we watched the snow fall and could see it transforming our world into something resembling Narnia, it was truly beautiful. If Mr Tumnus or Aslan had appeared that would have made it perfect. Alas that was not to be but it was still fabulous to get snow at Christmas, it gave us an unexpected opportunity to spend more time with our family than we had planned.

Christmas can be the most amazing time but ultimately can feel something of a letdown after all the hype, the shopping, the food, the presents, it seems to have gone before we stop long enough to enjoy it. Yet the snow this year held up our plans, slowed us down, changed our thinking and enabled us to really enjoy what’s best about the season, spending time with our family.

As I reflect upon this Christmas, yes I’ll be thankful for the gifts and the food and the time off work but the best thing, the most memorable time, was having our plans interrupted by the snow. I’ll remember running outside with my adult children and having a snowball fight, I’ll remember us building a seven foot snowman, I’ll remember us having to fix spare beds as everyone had to stay, I’ll remember standing in the kitchen, alone, listening to the hubbub from the lounge of the “kids” getting excited playing scrabble at midnight, looking through the crack of the door to see my beautiful granddaughter asleep in her Nanna’s arms.

And one thing I will never ever forget was seeing Emily’s face when she excitedly opened a gift to find the new phone she had been hoping for. The look of wonderment on her face was worth a million Christmases. 

Sheer joy!

A Christmas Reflection


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.