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!!!!!