Tuesday, 31 December 2013

Happy New Year!

As the last few hours of 2013 disappear like a wisp of smoke into the night sky, I wanted to stop for a moment, pause, reflect, and give thanks.

It's easy to just rush on into another year without actually stopping to say thank you for the past year. And sure enough I know that there have been challenges, there ARE challenges, and yes there will be challenges in the future too. And life is not at all straightforward, simple, uncomplicated and 2013 has borne witness to that in many ways. I'm sure for many, if not all, parents and carers of people with special needs, 2013 will have had its ups and downs, tears and tantrums, triumphs and disasters, heartbreak and celebrations.

Yet it is in these moments that our friends come to us, to share with us in whatever it is we're enjoying or enduring. And when I say friends, I include the many people I have never met personally, but whom I have only met on social media platforms. Isn't it amazing that we can receive more encouragement from a parent we have never met, who lives in another part of the country, and sometimes overseas, than we have ever received from friends and family who we see regularly, who know our struggles, who see our stress, our pain and sometimes they may even see our tears, yet seem incapable of extending the hand of help or word of encouragement we so desperately need.

I'm not saying this to do anyone down; rather the opposite. I wish to lift people up and honour the wonderful, amazing people who have made a difference to me in the past 12 months. And if you're reading this and wondering if I mean you, then I probably do. I won't single anyone out. But there are people who have inspired me by writing such wonderful blogs, newspaper and magazine articles, sent messages of encouragement and challenge through Twitter and Facebook. Some of you I have met, and the pleasure was all mine; others I would love to meet at some point in the future. Some are personal friends, some are even relatives! 

To you all I say a heartfelt and mighty Thank You!

Your words make a difference. There's a wonderful piece of poetry which begins:
 
"My heart is stirred by a noble theme
as I recite my verses for the king;
my tongue is the pen of a skillful writer."
 
So your words - our words - make a huge difference to someone, whether we speak or write let our words be the words of a skillful writer - someone who knows their craft, someone who knows that in our words is the power of life or death, to build up or to tear down, to encourage or to discourage. Thank you, my friends, for choosing words of life, words of affirmation, words of love, words of inclusion, words of challenge, words of strength.............words of hope.

May you enjoy a peaceful and blessed 2014 and beyond.

Love,
Paul (and Emily) x



Friday, 6 December 2013

All I want for Christmas is......

I was sitting on the settee with Emily last week and I noticed she was writing for all she was worth – smoke bellowing from the tip of her pen as it screeched across the page, line after line after line of her notebook. Every now and again she would look at me through the corner of her eyes, the edges of her mouth would curl up, I’d look at her and she’d giggle.

This all sounds rather cute, and yes it is. But what you need to understand about Emily is that when she does things like this it normally means she’s having rude thoughts or, more than likely, she’s hatching a plan – a plan which usually has mischief written all over it. Emily you see (and I hope this comes as a comfort and an encouragement to those with young children fearing for the future) well Emily is a bit…..how can I put this?......well she’s a little bit bonkers, she’s crazy, she’s daft and enchantingly so. But then she shares the same genes as the rest of us here and we’re all slightly fruit loopy too (although we do manage to trick people fairly regularly into thinking we’re quite sensible – actually nothing could be further from the truth and if you invite us round for dinner, you do so at your own peril!). So rather than sitting rocking in a corner, which was pretty much what we were told when she was born, Emily is forging her own way in the world in her own inimitable style and has developed a personality so huge she should come with a public health warning.

So there I was sitting on the settee wondering what on earth Emily could be up to now. “What are you writing?” I asked.
“Ssshhhh It’s my Christmas list” came the reply.
“Oh, I see” I said, knowing that this was going to be fun. Emily loves to make lists you see – just like her Mum and her big sister (genes you see – there’s no getting away from them). Emily’s birthday present list last year was amazing. And she loves to write to Santa. And why not? To be honest the only reason I don’t write a list anymore is because I’m fed up of Santa always bringing me the wrong presents. I remember a Christmas not so long ago when my list specifically stated a new motorbike and a night out with Kylie and what did I get? – a skateboard and a Jason Donovan in concert DVD – now come on I know there’s been a recession and all but quite frankly…..

No, I’m sorry, you’re right, it’s not about my list. Where was I? Oh yes……   

“What’s on your list so far?”  I asked Emily.

At this invitation Emily cleared her throat and began to reel off the longest Christmas list that Santa is ever likely to receive. Not just the longest, oh no, the longest and the wackiest. This was a list that would have been well received in Narnia or Hogwarts. But I think even Aslan or Harry Potter might have struggled to rustle up the most eclectic and, frankly, insane stocking full of presents you are ever likely to dream up. And whoever might own a stocking large enough for these gifts is probably best steered well clear of. Surely even Hattie Jacques or perhaps Mo from the Roly Poly’s couldn’t have owned a stocking large enough for these gifts. No Santa, I think you’re likely to need many stockings for this one!

Anyway you decide. Here’s the list in its entirety. You might need to put the kettle on half way through so I’ll warn the national grid there’ll be a surge somewhere between “a shower cap” and “a photograph of Gary Barlow”.

Emily’s Christmas List 2013  


Drum kit
T-shirts
Hair dye
Poster of Ant & Dec
Hairband
Waterloo Road DVD
A Sooty book
Pom poms
Leather coat
Waist band
Guitar
CD
Handbag
New dress
Vacuum cleaner
Wood toy (Toy Story)
Disney back pack
Bra
Pants
New shaver
Ice cream maker
Machine
Bubble bath
Shower cap
Baseball cap
Ball of soap
Talcum powder
New outfit
New fashioned leg warmers
Funky belt
Scooter
Washing machine
Rags (like Cinderella)
Hair colour
Trousers
Cheeky skirt
Remote
Bible
Coat
Flowers
Sports bra
Thermometer
Photograph of Gary Barlow
Blossoms
Plates
New ribbon for my hair
Telephone
Chocolates
Selection box
Hair remover
Sandals
Bikini
Jacuzzi
Radio Hallam FM
Toilet seat
Onesie
Gel
Dancemat
Trampoline
Gym skirt
Tie
Orange cake
Wand
Bicycle
Spinning plates
Clips
Grips
Grapes
Pigtails
Angels flying around
Cheerleader uniform
Book shelf
Smoke
Fishing rod
Karaoke machine
Hair cream
Biscuits
Cleansing wipes
New floor
Braces
Frying pan
Wine glass
Rubber snake
Rubber
Pencil sharpener
Miss Piggy
Disney Princess outfit
Magazine
Sexy clothing
Lunch box
Hairdo
Football pitch
Boat
Raft
Jumper
Diving board
Whistle
Suit
Scary catwalk
Wig
Curly hair
Ant & Dec
Carpet
Puppy
Ice skates
Basketball
Racket
Face mask
Gate
Cathedral
Nest
Telephone box
Police scanner
A booklet of William


Santa, the ball is now well and truly in your court – the very best of luck!!!

And if I don’t speak to you before, have a lovely Christmas  x

Emily with one of her favourite gifts last Christmas - sprouts!!


Sunday, 1 December 2013

Is your child a runner?

I had cause recently to remember some of the stresses of raising a child with special needs. It’s amazing how seasons come and seasons go; sometimes we imagine that the current season will never end but then you suddenly realise you moved into a new season and didn’t notice the transition.

Emily was a runner. Now when I say she was a runner please don’t fall into the trap of thinking this is a good thing. I’m not for a moment suggesting she was Jessica Ennis’ training partner at Don Valley Stadium or that she won any certificates for the 100 metres on school sports day. Cast from your mind any thought of Emily wearing a running vest with a Bupa London Marathon number on the front. This is not the kind of runner I mean. No, Emily was a runner – at any given time, without any notice she could shoot off in any direction like a wayward rocket on a windy fireworks night.

For those parents who know only too well what I mean about Emily being a runner and have had similar experiences with their children, I wanted to draw the random threads together so that you know you are not alone and it is perfectly normal, albeit frustrating and stressful. If you’ve no idea what on earth I am talking about (well you won’t be the first and you certainly won’t be the last) please pull up a pew, pour yourself your favourite tipple, read on and understand what some parents have to go through. Although, having said that, I am sure you go through things with your children that I and others have not had to cope with. But the beauty of this little online enclave is that we can share experiences and learn from one another and, most importantly, be an encouragement to one another. Mine’s a large glass of Merlot please, thanks for asking!

Runners, escape artists, unintentional hide and seek champions – whoever said that children with Down’s syndrome are slow to achieve anything – they are geniuses when it comes to things which, perhaps, we would rather they weren’t. Perhaps a reminder that we all learn in different ways and at different times, and that we go at our own pace whether that’s convenient for others or not.

When Emily was about 6, forgive the lack of exact detail I’m getting on a bit and struggling to remember……sorry you were saying?  ……Oh yes, when Emily was about 6 she managed to escape from the school yard at play time. Not only did she escape, she turned up on our doorstep at home, having found her way out of the correct exit gate, crossed over two roads and remembered where she lived. “She did what?????!!!!!” I hear you shout. Yes, and to add to the potential for harm there was no-one home when Emily knocked on the door and she was only found by another local parent driving by and thought it looked a bit odd.

Well on one hand it’s absolutely horrendous that a young child with special needs could go AWOL like that and nobody notice, but then on the other hand you want to say, “Well done Emily – fantastic achievement!” Let’s be honest if school had suggested a spot of independent travel training for Emily we’d have all said there was no chance she’d be able to do what she did and of course the dangers would far outweigh the benefits. And of course, Emily’s Teaching Assistant was mortified when she found out. She was a delightful lady who we had the utmost respect for and who turned her back for a moment and Emily was gone. Of course it meant a change to procedures after that but it just went to show that with our children anything is possible.

I can’t tell you the times when we’ve had teams of people looking for Emily, like at church and she was eventually found hiding in a cupboard, or the time in Tesco when she decided to disappear into thin air before my very eyes. You can imagine the scene, we’re near the clothing section, one moment she’s there the next gone and I’m the responsible adult. (I use the word ‘responsible’ with a caveat so large it would quite easily win first prize in any village fete “huge caveat” category, if such a thing were to exist amongst the parsnips, runner beans and chrysanthemums) “Emily”, I whispered, “Em”, louder now, “Emily, Emily” panic overtakes me and dignity leaves me as I shout “Emily, Emily….” “Yes” as her head appears from underneath a clothing rail which she has been hiding in. Oh the fun we have had at times. Obviously Emily calls it fun, I call it something completely different but at the time of writing we’ve not reached the watershed so I can’t go there.

But here’s the good news. Emily is now 21. I don’t know when it happened but I’m no longer in a sense of panic when she’s not in the same room when we’re out. Well that may not be strictly true but that’s all to do with my own insecurities rather than Emily’s maturity. She tells me where she’s going and ….she comes back afterwards. She’s not running anymore. She’s not hiding anymore. She’s not trying to disappear just for fun. It’s easier. Yes! It is easier. Don’t get me wrong there are still concerns in other areas but in this particular area things have calmed down, changed, if you will. We’ve entered a new season and left the old one behind. Things do change. Things do get better. Things will get better. So take heart and keep going. Persevere. Be encouraged.  


The current season? Oh well as Emily said about Craig Revel-Horwood whilst watching Strictly Come Dancing, “Craig is so cute. I must have him!” Hormones. Help!!!!!

Saturday, 14 September 2013

Thrills and screams

It’s Saturday morning and I’m sitting on a coach travelling down the M1 in Derbyshire, just passing Bolsover Castle. The red digital clock above the driver’s head has just clicked over to 8.58am – and whilst I know this to be true – my eyes are clearly having a little difficulty catching up with the morning.

The scene out of the window does nothing to stimulate my eyes – heavy cloud providing a thick grey canopy above the murky, damp landscape. September has forgotten her smile this morning.

The coach is not quite full and everyone has settled down from the initial excited chatter to a calm, quiet conversation. Another hour or so to go – destination Alton Towers. It’s our local Down’s syndrome support group’s main trip of the year. It might be calm at the moment but I guarantee it won’t be like this by lunchtime!

I move to an empty seat in an effort to find some cool air – clearly our reliable and steady driver thinks that people with disabilities can’t cope with mid-September dank Derbyshire temperatures so has cranked up the heat to just above the “Tropic of Capricorn” setting on his climate control panel! Outside it looks more like Reykjavik than the tropics so I sit back thankful that at least for this part of the day I’m warm and I’m dry. It won’t be like that by lunchtime either!

Across the aisle Emily is sat with Lily. They’re both 21, both students at college and both have Down’s syndrome. They’re clearly enjoying each other’s company, excited for the day and doing lots of (probably inappropriate) chat and girly giggling. Emily had wanted to sit next to her friend Yas (who also has Down’s syndrome), but she came home from college yesterday saying Yas wasn’t coming. This is not uncommon. Yas says this every time. But she always comes. But today is different she arrived to drop her mum off and went home with her dad! She’s a sad loss to our day as she is full of fun and a vest for life so often missing from her generation (and she's also full of some very inappropriate language which keeps us entertained no end) but I’m glad that she’s been empowered to make an adult decision that’s respected as the final word.

So who is here? Well quite a number of families actually, it’s a trip to benefit mums, dads, brothers and sisters, not just the person with Down’s syndrome. Having someone with a disability in your family affects the whole family so we feel it’s right to provide something to benefit the whole family.

There are quite a few people who are by now happily into their iPod – no doubt listening to Lady Gaga or One Direction I suspect, with an occasional parent reminiscing over the new romantic era of Duran Duran and Spandau Ballet. What did people do on coach trips in a pre-iPod world? I seem to remember that to keep your kids quiet back and achieve parent karma back in the halcyon days of seaside coach trips, whether Sunday School or the Working Men’s Club, was the obligatory pop and crisps. This was generally followed by little Johnny being sick, lots of moans and groans and shouts of “disgusting” and a pervading stench of TCP for the remainder of the journey.

I think I prefer the world created by Apple! At least as far as coach trips go!

Looking around I see people at different phases of life. Young children, teenagers, and some in their twenties, then there are the thirty, forty and fifty-somethings. All have a story. All with this trip because of someone in their life with Down’s syndrome. Some are struggling with school issues, some have family problems. Some are parents who have had a child die. All have a story. All in need of support. And all happy to support one another. Community.

It’s a privilege to be on this coach as it struggles up the hills of the leaden skied Peak District. I wouldn’t want to belong to a world where we didn’t recognise one another’s hurts, where we couldn’t see the fragility of life. I love having that tug inside that implores me to do what I can to respond to the need of my fellow man, to make a difference in a world where so many are indifferent.

The excited chatter increases as we pass more and more brown signs pointing us in the direction of thrills and screams. And I wonder that is actually life all over for parents of someone with a disability. There are thrills and screams often as the tide of life ebbs and flows. So much to celebrate, yet so many challenges. It’s the silent scream that’s loudest. At least as far as today is concerned I’m certain Emily will be thrilled and I’ll be doing the screaming!

It’s 9.59am according to the red digital clock as the driver pulls into the car park. In a few minutes time my eyes will be bulging as my body is thrown across the Staffordshire countryside at speeds and angles it was never built for! Time to wake up I think!

Love,
Paul

Thursday, 5 September 2013

Slipping through my fingers.....


They say that life is like a toilet roll – the further you get into it, the faster it disappears! It certainly seems that way. Is it me or is there more to fit into 24 hours than there used to be? Seriously, one day merges with the next and one week with another and I’m still not sure what I managed to achieve sometimes. Well maybe I just achieved survival but that’s kind of a minimum expectation and I don’t know about you but I don’t want to just survive – I want to thrive!

The year has flown by, the snow giving way to a late Spring and finally a glorious Summer. Yet before we know what’s what here we are marching relentlessly into a new school / college year, blackberries bursting in the hedgerows and the cool early morning watercolour sunrise meeting a low lying mist, giving the game away that Autumn cannot be delayed much longer.

And I love Autumn. I love the changing of the seasons. I love cold frosty mornings and a warm fire and good company. But seasons change, and the seasons of life change, time moves on and I am no longer the young dad I once was – the mirror mockingly tells me so every time I try to outstare it. (Note to self: remove all mirrors)

But sometimes I want to put everything on hold, press the pause button, stop to look around. If you were born anytime before the 70’s you might remember a song called Slipping through my fingers by Abba: “sometimes I wish that I could freeze the picture, and save it from the funny tricks of time, slipping through my fingers all the time, I try to capture every minute….”. Even before having children I was aware of the poignancy of the lyrics, which were matched with a melancholy melody. And I have tried to capture every minute of all my children growing up but sometimes it’s just so all-consuming just surviving the days, weeks and months that you forget to celebrate the beauty that exists even in the most difficult of days. But there are many who would gladly swap with us.

This year Matt has been to Afghanistan, Laura has become engaged (hurrah) and Emily has had her long awaited 21st birthday (with a fantastic party which I’ll tell you about another time). Those beautiful babies I once held have grown up…..yet I feel like I’m only just beginning to understand what being a parent is all about.

Remember the good days and not just the challenging ones

Am I waffling? I think I’m waffling. So I’ll cut to the chase. My encouragement to you is this. Enjoy your children, despite the difficulties that there will inevitably be. Remember the good days and not just the challenging ones. Use your camera to capture moments that you will otherwise forget. Allow your senses to touch, hear, see, smell and taste every moment of every day. Enjoy your children. Allow them to bring out the very best in you even when you feel at your worst. Parents of children with learning disabilities often feel like we’re not good enough, like we’ve failed, like we’re not being the best we can be for our children. But there’s nobody quite like you and there’s nobody quite like me (thank goodness I hear you say!) – and there’s nobody quite like each of our beautiful children.

I see many parents who often look worn out. It’s no surprise because there are so many battles to fight and we only have strength for so much. That’s when we need to rely upon each other. Get alongside someone who will help practically and someone else who will offer words of life and encouragement. We need one another and the family of online parents is amazing, supportive and the very best of humanity even amongst people we may never meet. You were born for a purpose. You were created to prosper, flourish and thrive so give yourself a break!

I’ll leave with this. 21 years ago Emily was born, we didn’t know anything about Down’s syndrome, we didn’t know much about parenting, we didn’t have a clue how we would get through. But we did. “She might not be able to speak”, we were told. Well today the phone rang – again. It’s been ringing a lot recently since we put an advert in the paper to sell a piece of furniture. “Hello” said Emily, “no I’m sorry we don’t want any today - bye!” And with that Emily terminated the call and put the phone down!!! “Who was it?” asked Sheron. “Oh, just someone selling something” said Emily. She was articulate, confident and quite certain that then caller was another sales call. (a few minutes later Sheron answered the phone to a bewildered caller who was asking about the advert but had just received a good dose of Emily at 21…..)

Then as I got in from work Emily proudly showed me her certificates from college which had arrived in the post this morning. With that she shouted, “Hey Dad, I stripped my bed when I got up this morning…….I know,  I could get a certificate for changing bed skills”.

Despite us being told all about the things Emily wouldn’t be able to do, she has already done so much more and has not just survived – she has thrived! She’s amazing!

Now where did I put that Abba CD?..........


Love,

Paul
 
Emily in Northumberland 2013
 

Tuesday, 20 August 2013

Who is your real-life Superhero?


 Super-sheron!


Learning Disability Week is an annual awareness-raising campaign organised by Mencap. This year it is taking place from 19-25 August 2013 and will celebrate people with a learning disability, their families and supporters by asking the question; who is your real-life superhero?


Earlier this year I wrote a blog entitled “Who wants to be a superhero anyway?” about how we parents shouldn’t feel like we have to change the world – we just need to be there for our family, do what we can and not feel guilty about what doesn’t get done. Now those lovely people at Mencap ask me to write a piece about our family superhero……..hmmm (scratches head) – how do I do this without appearing to contradict myself? (image of broken egg and shell dripping down face).

Well, it’s simple.

Superheroes are recognised as such by others. They themselves think what they’re doing is normal, nothing extraordinary, no super powers - just getting on with life and being themselves. Superheroes don’t have to try to be superheroes just like chickens don’t have to try to be chickens* – they just are! (*insert your own animal if chickens are not to your fancy but at least I’m sticking with the egg theme!)

Our family superhero is my wife Sheron.

Sheron is amazing; she gave up work to be a full time mum and by the time our son was born we had three children aged 4 and under - one of whom had a learning disability. Here we are 20 years later and I can honestly say our family would be nothing without our superhero.

Would she recognise herself as a superhero? – No

Would she think she was anything other than any other wife and mum – No

Does she dress up in a catsuit or shiny boots like Wonder Woman?....... (ahem)


Our daughter Emily has Down’s syndrome. She turned 21 last week. She’s fantastic, loves life and lives it with confidence and a freedom which many others could only dream of. Emily is living proof that people with learning disabilities contribute more to our world than they receive back. She has taught me so much about acceptance, tolerance, humility and love and I am so thankful my eyes have been opened. Yet when Emily was born we knew nothing about Down’s syndrome and very little about parenting! Sheron was the one who wanted to learn as much as she could about the condition and do all she could to help Emily develop her potential. She was the one who learned Makaton, arranged Portage sessions, took Emily to the Down’s group at our local hospital to meet other families. She was the one who sought out other local families who’d been through the same, who visited them to see what experiences they had (no internet back in 1992 remember).

Yet Sheron was the one who wanted to make life better for others by leaving her name and contact details with the hospital, making herself available to visit new parents who needed encouragement and inspiration. Not only was she a great mum but also a great advocate for people with Down’s syndrome and a great source of hope for strangers who became friends.

Sheron was the one who helped pioneer our local Down’s syndrome support group and has been a Trustee and Secretary for the past 16 years; everyone knows if a job needs doing Sheron will get it done. She was the one who fought to get the schooling Emily needed despite the oft repeated refrain “but we’ve never done it like that before”. Sheron’s typical response was “well there’s a first time for everything”.

Sheron had to cope with the sudden and untimely death of her Dad when Emily was just 3 months old and then lost her Mum to cancer aged just 58. Since then there has been little family help, little respite and little support but Sheron has helped Emily to thrive and flourish.

And in all this Sheron would say that her life has been enriched by Emily’s presence and she’d be right. But Emily simply could not have achieved so much in her life without Sheron’s determination, generosity and unconditional superhuman love.


And as her name shows she’s definitely got a hero inside her - SUPER sHEROn!
With love,

Paul


Me, Emily & Sheron at Emily's 21st party

 
 

Saturday, 23 March 2013

Dad, when did I first have Down's syndrome?


“Dad, when did I first have Down’s syndrome?”
 
There are some events, some moments, some days you will always remember. Your wedding day, the birth of a child, the death of a loved one. Perhaps England winning the cup, the 9/11 attacks, your child’s first day at school, a special birthday, being told your child has a disability. Whatever the reason, there are those times in all our lives. Some of them we cherish and long to cling on to, thinking of them often, replaying them in our minds; others we despise and long to let go of, but can’t; the hurt, the shock, the anger, disappointment, the loss too real, the pain too raw.
Well last night’s conversation with Emily was one of those moments. A memorable occasion I will never forget and I’m sure in years to come I will look back with a smile, mixed with a tinge of sadness. I’m not sure when I expected this conversation to be but it wasn’t now.
This may come as a surprise to anyone with younger children but as the months and years go by you just get on with being a parent, without so much emphasis on Down’s syndrome. Of course there are the obvious challenges that come with having a child with a disability – health, education, respite, vulnerability and other day to day needs but in many ways our other children have their own individual needs also. So you get that busy doing life, your focus is on the person not the disability (just as it should be). Down's syndrome takes a back seat.
Then along comes a bolt from the blue. A question that suddenly stops you in your tracks. It's as though the earth stops turning on its axis. We had been watching Born to be different and when one child was introduced as having Down’s syndrome, Emily said “I’ve got Down’s syndrome”. We’ve had previous discussions so we knew Emily was aware of Down’s syndrome and that it was something she knew she “had” and that other friends also had Down's syndrome, like her boyfriend Jono.
Then as Emily was getting ready for bed, she said,“Dad, when did I first have Down’s syndrome?” – I couldn’t immediately think of an answer I wanted to say out loud so, trying to buy myself a few precious seconds I asked Emily to repeat the question, which she did so I knew it was something she wanted to talk about. So we sat down on her bed and we chatted. What did I say? Well, I had no time to consult the book of Perfect Answers for Parents (if only there was one!) – in fact, on second thoughts, if there was one I would throw it away and write my own because all our children are individuals, unique– so there’s no perfect answer – only honest conversation between parent and child.
Well Emily listened to my stuttering. I told her she didn't catch it, it's not an illness but that she had it from birth - I even gave her the science – telling her she was special as she got an extra chromosome– one more than any of the others in our family. She liked that as she is just as competitive as her elder sister Laura and likes to think she wins. So she won! She got the extra chromosome and that means she deals with things differently to some of us. She finds it more difficult to do certain things like catching a bus on her own, crossing a road, counting money etc. But then she finds other things easier than the rest of us –forgiving wrongs, loving unconditionally, giving a hug when she sees someone is down. I told her that just as she learns from us, we learn from her. In fact, I've said before, I believe Emily teaches me far more than I could teach her.
Emily listened, she asked me to clarify when she didn’t understand my stumbling words, she nodded and made me feel like I knew what I was talking about (she is very generous like that!).
It was a beautiful moment. But then I wonder how I would feel if I kept hearing words about me and I didn’t know what it meant; didn’t fully understand. And that’s why there’s a tinge of sadness. This conversation brings back fully into focus the difficulties which Emily copes with day in day out. I feel my heart swell when I consider how much she has triumphed over since she first received that special extra chromosome.
She’s a champion, an overcomer and my inspiration.
 
 

Saturday, 9 March 2013

Emily's song


When you’re told that your baby has Down’s syndrome it can be a devastating blow. It can come as a shock; it can come as an earthquake shaking our world to the core. The perfect baby we might have expected, we are told is imperfect.

Of course, with time, you come to realise that having a child with Down’s syndrome is an enormous privilege. Being a parent of any child is an enormous privilege.

But I’m sure all of us who have heard those words, “your child has Down’s syndrome”, or indeed any other disability, have dealt with the emotion in very different ways. And that’s fine. Some may cry, that’s natural and expected, after all it is a shock and tears can be a great release. I cried. But then I’m a bit of a big girl’s blouse. I cry at anything. Don’t come with me to the cinema, it doesn’t matter what I go to see, I’ll end up with soggy popcorn!

Others may shout, others may get angry – that’s ok. The important thing is that emotions are not bottled up, that there is a release, because then we can begin the healing process. For me a way of getting my emotion out has always been to write things down, whether it’s a song or a poem. I find it very cathartic. I know many other parents do the same.

I recently came across a song I wrote shortly after Emily was born. It’s by no means a classic, I’m no Gary Barlow or Bruce Springsteen, but it’s my record of what I felt at the time. It’s a backward glance at my life 20 years ago so I thought I would share it with you.

 
Emily's Song

Emily, I’ll never forget the first time I saw you
Emily, it meant so much the first time I held you
A new life in you and a changed life for me
Right at that moment no-one could see
Just how much our lives would change

Emily, the doctor said that you had Down’s syndrome
We couldn’t see what the future held after we’d taken you home
A new life in you and a changed life for me
So many questions, just how could it be?
That you came to us – had you chosen us?
 
A meeting of angels in heaven above
Decided on you to bring down God’s love
They loaned you to us so together we’d be
Stronger in love and charity

Emily, it’s a pleasure to know you, you bring so much joy
Now I can see, there’s a plan behind the birth of every girl and boy
A new life in you and a changed life for me
Right at this moment I’m so proud to be
A guide to you, but you’re the light in me

A meeting of angels in heaven above
Decided on you to bring down God’s love
They loaned you to us so together we’d be
Stronger in love and charity

A meeting of angels decided on you
To bring down the message we now know so true
That we’ve got to stop taking and learn how to give
And only then can we start to live

Ó   Paul Critchlow 1992
 
 
 
 

Tuesday, 29 January 2013

Sisters

Today 29th January is Laura's birthday. She is 4,000 miles away in North Carolina so here are a few pictures of Laura & Emily down the years - sisters together or "tisters" as Emily always used to say.
No more words required.....



















 


Wednesday, 23 January 2013

A DATE TO REMEMBER

How many parents can say they were there on their child’s first date? I can...…keep reading and I’ll tell you more.


Have you been watching Channel 4’s The Undateables? C4 describe it in the following way “people living with challenging conditions are often considered 'undateable' - this series meets a few and follows their attempts to find love”.

It’s an awful title for a TV programme, particularly as it is so inaccurate. I mean – they are often considered undateable by whom? If we’re honest we’re all undateable if the spotlight were to be put on particular aspects of our lives, our eating habits, bad language, fashion sense, rudeness and that we fart in bed when we think our partner’s asleep! However, we usually hide these aspects of our lives away while we are in the throes of courtship and bring the bad stuff out once we’re married! Anyone with me?

If you can manage to get past the title there are some great people on there - and I watch almost squirming, hoping against hope that it will all be positive but knowing somewhere there's likely to be a portrayal of disability that says "odd, different, weird" that many of us parents are working so hard to overcome. This week The Undateables featured the wonderful Kate (aged 29), looking for love and finding it with the help of a huge personality and a cunning plan to woo her man with some beautiful poetry she’d written herself especially for the occasion. What was so undateable about Kate I hear you ask? Well - Kate has Down’s syndrome! Er.. hello! – this is the 21st century, people with Down’s syndrome have equal status with anyone else, as do all people with disability or special needs. So, yes, they can have an expectation of love, happiness, marriage and a life of fulfillment. Kate is a beautiful young woman, with a home, a job, independence, personality, wit, charm, humour……and the need to love and to be loved. I have seen many young people on a night out staggering from one gutter to the next, vomit down their chests who are far far less dateable than Kate or anyone else on this programme.

It soon became apparent to their teachers that there was something in the air (and it wasn’t the chicken korma drifting through from the dining hall).

So let me tell you about my daughter Emily & her boyfriend Jono. Emily is 20 and has Down’s syndrome; Jono is one year older and also has Down’s syndrome. They met at school when Emily was 16. It soon became apparent to their teachers that there was something in the air (and it wasn’t the chicken korma drifting through from the dining hall). No, Emily and Jono had hit it off. Laughing together, wanting to be with one another, being in a better mood when the other was near. Sound familiar?

So the staff suggested to us that Emily & Jono might want to go on a date. A date? Wow that sounds scary. I’m ultra-protective Dad! There must be another way. But Emily decided that this would be a good idea and who are we to stand in Cupid’s way? How could it work though as both Emily & Jono need a carer when out in public so we contacted Jono’s parents (who we had never met) and fixed a date at a pub on neutral territory.

We approached the evening with trepidation. It could go so terribly wrong – what if we have absolutely nothing in common except a child with an extra chromosome? Well, we need not have feared. We arrived on time. Jono was already there looking as smart as you could wish - hair gelled, shirt, jacket and presented Emily with a kiss and a lovely bouquet of flowers. Parents are not supposed to be there to witness such things on first dates but this was just priceless. Some things you see and wish you hadn’t and others you don’t but wish you had. Well this was one of those moments you’re not supposed to see but are so glad you could say “I was there”.

Emily & Jono ate their meal and snuggled up, faces covered in the remains of a shared chocolate ice cream, chocolate fudge cake and chocolate sauce dessert.

We introduced ourselves to Jono’s parents and put the lovebirds on one table together while we sat down to eat a meal with Jono’s parents - complete strangers until two minutes ago and chat as though we had known each other for years. It was quite surreal. Emily & Jono ate their meal and snuggled up, faces covered in the remains of a shared chocolate ice cream, chocolate fudge cake and chocolate sauce dessert. A successful first date!

I asked Emily this evening if she could remember her first date with Jono and she told me the name of the pub and told me, "When Jono touched my heart it made me feel like a confident lady."

Suffice to say that over 4 years later Emily & Jono are still going strong. They have all the desires that any young couple would have – yes all the desires! They have it all planned out and regularly ask each other to marry – they expect to get engaged, get married, find a home and build a life together. They are very very dateable! And I challenge Channel 4 to film them and tell me they’re not!

And when they are married, no doubt the following words will be read, as they are in so many wedding ceremonies. And as they are I will shed a tear and thank God that he brought Emily into my life to show me what love really is – why don't you join me and say these words out loud, and think of your beautiful child as you do:

Love is patient and kind.
It does not envy or boast and is not proud.
It does not dishonour others, it is not self-seeking or easily angered.
It keeps no record of wrongs.
Love does not delight in wrongdoing but rejoices with the truth.
It always protects, always trusts, always hopes, always perseveres.
Love never fails.
 
My ongoing unwritten 20 year study into living with someone with Down's syndrome so far comes to the following conclusion - people with disabilities have the same hopes and dreams as anyone else, the same desires, the same needs, the same craving for independence, acceptance and understanding; the same expectations of life. And here's the thing, they deserve nothing less. So here’s to Kate, to Emily and Jono, to all our children who hope for love and to be loved – however far off it may be - may they find their hearts desire and may we allow them the freedom to do so.
 
With love
Paul   


Emily with Jono on their first date