Today is World Down Syndrome Day. People all over the world are celebrating the unique character and personality of people with Down's syndrome. We're celebrating the colour they bring to all our lives. I'd love to put together a really clever tome to inspire and encourage everyone. But I simply want to say Thank You.
Thank you to everyone who has been blogging, tweeting, posting, youtubing, emailing and generally all things ending with ...ing, the world over, for raising the profile of people with Down's syndrome and helping to challenge outdated thinking and perceptions.
Thank you to the organisations, charities, support groups who do so much to support people with Down's syndrome, their parents and carers, friends and family.
Thank you to the forward thinking media planners and producers who give air time, column inches and a voice to people with Down's syndrome across many media channels.
Thank you to health care professionals who do so much to care for people with Down's syndrome when they need it most.
Thank you to teachers, teaching assistants and all people connected with education who make education a possibility and a reality through creative planning and inspirational teaching.
But most of all, thank you all those beautiful people who have Chromosome 21 in triplicate - our friends with Down's syndrome. Quite frankly I am a far richer person for knowing you. You bring light, life and colour into the world. You make me see things in a completely different way.
You make me slow down. Stop. Look. Breathe.
You challenge me. You challenge my thinking. You challenge my hopes and my fears. You challenge my prejudice. You challenge my patience. You challenge my learning and my desire to learn more. You inspire me. You bring out from within me something that would otherwise have remained buried deep down; compassion. You help me realise that the most important person in the world is NOT me.
Friday, 14 March 2014
What do the parents of a 20 something get up to on those days when your loved one is staying at Grandma's? - or Nana's as it is round our neck of the woods. Well those days don't come around very often for us but last weekend Emily was having a weekend off - giving Nana the full Emily experience - so we decided to head for The Smoke!
Our excuse was that we wanted to show Mac, Laura's American fiancé, the bright lights, the hustle, bustle and general mayhem that is London, that way he may be even more grateful when he gets back to Yorkshire (just joking London friends before you all close the page!). Just for clarity, Mac is Laura's fiancé and he's American. By saying he's her American fiancé, I'm not for a moment suggesting she's got fiancé's of other nationalities - we don't live like that up here in then North you know! Glad we've cleared that up.
Where was I? Oh yes, Emily's having a weekend off so like any other sane family we were up at 5am and heading for the 6.29 Sheffield to St Pancras, first class if you don't mind! We'd tried to book a taxi to take us to the station but we'd have had more luck asking for a fleet of unicorn's to pull us in a chariot of gold. Instead, I was nominated to drive us in, drop the passenger cargo at the station and then go and park where I work - a good mile away. So by 5.50 I'd dropped them and was on my way to parking when I got a missed call. Laura was ringing to tell me the 6.29 was now the 6.09 due to a landslide and East Midlands trains do apologise for not letting me know! Oh, and it's an hours wait if we miss this train.
An early morning run in shoes and leather jacket through the city centre was not top of my list for Emily's weekend off, I must confess. And my family must have wondered if I was actually going to survive those last few metres before I staggered onto the station concourse, clutching at my chest and pointing like a madman for everyone to get to the platform. Not quite the first class start to our first class travel day but it had to get better from this point right? Hmmm....
I could tell you all about Westminster Abbey, the Whispering Gallery at St Paul's or the beautiful walk along the South Bank in glorious Spring sunshine but, quite frankly, nothing London had to offer compared with a First Class train journey on East Midlands Trains. Let me tell you why.....
I quickly nicknamed him Safety Steve
We'd not been going long when we were welcomed aboard by a confident man over the tannoy letting us know we'd be stopping at Chesterfield, Derby and London St Pancras. He also told us in no uncertain terms that this being a Saturday, First Class passengers would not be getting a trolley service and if we wanted our complementary drinks we'd jolly well have to go and get them ourselves. However, if we dared to go without our tickets, or if we ordered a drink before showing said ticket, we would be served a chargeable beverage and there'd be no going back. He proceeded to terrify us with so many health and safety instructions we were looking for tin hats, life jackets and inflatable dinghy's just in case. I quickly nicknamed him Safety Steve.
Laura and Mac were the first to venture to the buffet car. They returned carrying their coffee cups in brown paper bags, saying that the European gentleman (I later discovered his name was Ivan, as in Lendl) serving them, insisted it was carried this way. I suggested it would be a health and safety thing, you know what it's like. Sheron and I were next up. We got to the buffet car and were about 5th and 6th in the queue. Suddenly from behind us the slide door drew back and in rushes a fortysomething, portly train employee, along with ticket machine, shouting for us all to move to one side and make way as he has top get through. What could have happened? Surely he must be going for a defibrillator for a collapsed passenger?
No. He was going for Ivan (that's I-van, not Eye-vern - these things are important) serving beverages in bags. He drew Ivan out from behind the counter and proceeded to tell him, in front of us all, how he had seen a customer walking along the train without a brown bag. Poor, humiliated Ivan, began to protest but his colleague, Darren, said that if the drink was spilled he, as train manager, would get into trouble but Ivan would get the sack. At this point he rushed to the tannoy next to us and announced that no hot drinks could be served as there were no more brown paper bags for them to be carried in. This was a health and safety requirement. And THIS was Safety Steve! Real name Darren. Safety Steve suited him better I couldn't help thinking. He went on to say that paper bag reinforcements would arrive when the train pulled into Derby!
.....faster than the steam from a boiling kettle
Well, the queue evaporated faster than the steam from a boiling kettle. However, *light bulb moment* we knew such a bag existed and was back with Laura in First Class. I rushed back and grabbed the bag and held it close as I made my way back to the buffet car, it was strangely like I'd found a golden ticket in my Wonka Bar! I entered the queue-less buffet car, smugly showed my First Class ticket and ordered two coffees, whipping out the lucky bag like I'd pulled a rabbit from a hat!
"Where did you get that?", Ivan enquired, smiling broadly. We told him and he said there were only three such bags on the whole train. You'd think it was the Polar Express and had been travelling through time to get to Chesterfield. Only three bags! The train started at Sheffield. They probably thought that by sneakily setting off 20 minutes early we'd all miss the train and they wouldn't need to sell any health and safety drinks! I felt sorry for poor Ivan, being told off in public like that, so told him he was doing a good job, shook his hand and began the hazardous journey back to First Class, sweat beading on my forehead, with nothing but my own guile and a brown paper bag between me and potential disaster. At that point I considered getting everyone involved in a treasure hunt for the other two bags but ran out of time as the train began to slow.
Soon we were pulling into the Paper Bag Depot, aka Derby Station. I sensed a loud cheer from all aboard the train, but maybe that was my over fertile imagination. I looked at those poor souls waiting to board, not knowing how close they were to not getting a drink before St Pancras. Hang on, what's this? A lady getting on carrying a Costa cup, presumably containing a latte, without the aid of a paper bag. Does she know what she's doing? What if Safety Steve comes along now? Thankfully, his attention was diverted counting the bags on board, and she found a seat. Phew! That was close.
Here's another announcement. It's Safety Steve again helping all those who got on at Derby to understand how important health and safety is, that this was HIS train, and they'd better not forget it. Oh, he also told us bags were on board but anyone caught carrying a drink without one would probably be shot by the time they got to Luton. Well, perhaps not, but you get the gist.
Caught up in a frenzy of excitement we couldn't help but go for another coffee. A longer queue this time but just like Groundhog Day here comes Safety Steve again. Surely not. No. Please no. Well actually this time his finger wagging and general "mentoring" for Ivan was to say well done. A customer had dared to complain that Ivan insisted on a bag being used even though he didn't want one. Steve let us all know that he'd told the customer, "well, you won't want to pay my mortgage when I get the sack will you!"
You couldn't make it up. This was the best train journey ever. I was at this point disappointed we were soon pulling into St Pancras, I'd have happily kept going and back up to, I don't know....Inverness!
Oh we're not done yet. Costa lady was ahead of us in the queue. She wanted to dispose of her Costa cup but couldn't find a bin she could fit it in. Ivan pointed to our side of the buffet car but again she said it wouldn't fit. He asked her if she was in First Class, which she affirmed. Understanding he was talking to train royalty Ivan agreed to take the cup and place it in HIS large bin! Jaw-dropping stuff but you couldn't help like Ivan.
Eventually we reached Ivan and asked for two coffees. Ivan smiled and said how about tea? Ok no coffee left, two teas. Ivan's face dropped. He didn't have two teas. He searched and searched and found only one tea bag. However, we could see he know had plenty of brown paper bags - he just had no hot drinks left to put in them!
All aboard, all aboard the Laughter Train...... next stop Chuckle Town....................
Posted by Emily's Dad at 14:35
Sunday, 2 March 2014
I am sitting in Emily's bedroom; sitting on her bed actually, trying to find some space, some peace, some quiet in a busy family home. It's early evening and as I look through Emily's window there's still some light left in the day but dusk is falling quickly.
Do you ever just go and sit in your child's bedroom? (even if that child is now an adult!) If you haven't done it - and you can get permission to do so - I'd encourage you to take a few moments to do just that and see what life looks like from their perspective. It's very revealing.
Emily's room is not large, it's as much functional as it is comfortable, but it's hers and there are signs of Emily all around. There are numerous pictures of Emily and Jono - her boyfriend of five years - heart shaped picture frames, some with added sparkles and flowers and pretty things. Every picture tells a story. They are happy.
My eyes begin to examine the room, not just looking but seeing, there's a difference. Perfume and make up. Books and bunting. CD's and DVD's, hair brushes and GHD's. More photo's of Em with Sophie (one of her best friends who happens to NOT have Down's syndrome), Em with Laura and Matt, her sister and brother. And a photo of a dog - I have no idea whose dog that is!
"Keep calm, the kettle's on!"
There's a sign above the door which reads "Keep calm the kettle's on!" which gives away Emily's liking for an early morning cuppa!
Teddies, more books and a camera - ready to capture memories yet to be made.
Favourite boots and an iPad (I wish I had a pound for every minute Emily has spent watching Ant & Dec on there!)
An invitation to a disco at the school she left nearly three years ago, where she'll meet up with old school friends.
Lots of pink things.
Certificates for passing stages 3 & 4 of her (mainstream) Musical Theatre "Performing Skills" course.
There's another picture of Emily & her Mum snapped having the time of their lives on one of the big rides at Alton Towers.
There's a radio, a CD player, cushions, a make-up bag.
Oh, look at that, I almost missed the large calendar of a certain Mr Gary Barlow, hanging on the back of the bedroom door.
So, okay, I hear you say. What's so different about this room? What makes this room worth writing about?
Well, that's the point! It is no different to any other young woman's bedroom. The photo's are unique, just as we all are, but this is a room that belongs to a 21 year old young woman. A young woman with friends and a family, a young woman with hobbies and who loves music. A young woman with a desire to look nice, to smell nice. A young woman with a crush on a pop star and TV personalities. A young woman with a steady boyfriend. She is happy. She has hopes. She has dreams. She has fun and she has memories. She loves life and she brings life to this room, even when she's not present.
And as I sit here and ponder a shiver runs down my spine. Literally. I wonder what is so terrifying about Down's syndrome that makes this bedroom scene unimaginable for parents who are diagnosed in pregnancy and feel they have no option that to terminate? There are many statistics to say just how many babies with Down's syndrome are terminated in the womb. I'm not going to repeat them here because too many times people with Down's syndrome are reduced to a statistic. Quote the statistics often enough and we take away the character of the person, the personality, the unique individual, the humanity. When I look at Emily I don't see a statistic, I see a beautiful human being who is loved dearly and who loves unconditionally.
And even as I write (yes I'm doing it the old fashioned way with pen and paper) - as I write and think and ponder, tears well up in my eyes. Just to imagine life without Emily takes me to a dark place; darker than the view outside as dusk is replaced with a late winter's evening. What if we had not had the joy of knowing this beautiful young woman? What would this room look like? Probably a guest room or full of storage boxes and things we'd bought but never really needed or used.
But the tears in my eyes and the shiver down my spine are for those parents who miss out. For their babies who are never born. And the beauty of living in the UK is that we have freedom to choose. Every day we make many choices - what to have for breakfast, what clothes to wear, what car to drive, what job we have. Life choices - should I get married? Should we live here or there? Who's parents do we go to for Christmas dinner? How many children would we like? What do we do when we're told there's a risk our unborn child may have a disability? May have Down's syndrome?
"What? That's not a choice I expected to have to make." Shock. Unexpected question. Uncertain future. Still in shock. "But I know nothing about Down's syndrome!" Choices. Decisions. Head spinning. Counselling. Still in shock.
The ultimate decision is placed into our hands. The power of life and death. No-on is prepared for this. What are you going to do? Continue with the pregnancy and face an uncertain future or terminate? Life or death? Let me say right now I sit in judgement over no-one. I am far too aware of my own failings to judge another. I know I make choices that sometimes hurt others. But why do those frightened expectant parents choose termination rather than to proceed with the pregnancy? I believe there's an expectation within society that we can't bring an imperfect baby into this world. What hypocrites we are! Who is without fault? Which one of us is perfect? Yes, there are many wonderful people out there but I have yet to meet anyone who is perfection personified. So why dare we not bring an imperfect child into this world? It is entirely plausible that most people spend longer gathering information on a car before deciding to buy it than they do about Down's syndrome before deciding to continue or terminate a pregnancy.
Does being able to identify Down's syndrome in the womb give us the authority to terminate that life? In 21 years I have never met a parent of someone with Down's syndrome who has told me they wished their child had never been born. Science still cannot find the trigger for Autistic Spectrum Disorder (ASD) but when it does, will that be another choice offered? I certainly hope not.
Look around the room.
I forgot to mention the full length mirror on the wall. As I stand in front of that mirror I see the reflection of someone who has seen the highs and lows, the challenges, the difficulties, then joys, successes and the pride of being Dad to three wonderful children. Some of the issues we've faced as parents have been extremely difficult and completely unrelated to Emily. Some of our greatest challenges as parents have had nothing to do with Down's syndrome. Thank God there's no test in the womb for those things!
None of us are perfect
Whilst none of us are perfect, we are human. And our humanity accepts one another's faults, imperfections, our fears, weaknesses and failures. We do this recognising that others are overlooking our imperfections in their humanity. And we cope, we improve, we support. We learn from one another. We teach, we educate. We bind it all in love.
The irony is that I learn more from Emily, and others I've met who have Down's syndrome or other "disabilities", than I've learned from anyone else. The trouble with pre-natal testing for Down's syndrome is that you only ever get to find out about the extra chromosome. It reveals statistics. But it doesn't reveal the personality, the character or the life of the person with the extra chromosome. All people with Down's syndrome are individuals, unique, just like you and me.
Of course, there are things that people with Down's syndrome find difficult. I'm not suggesting for a moment that life is without its challenges. But there are things I find difficult too. There are unexpected challenges which arise whatever the abilities of our children, and the same is true even if we don't have children.
I urge healthcare professionals everywhere to ensure that balanced information is given upon detection of an increased chance of having a child with Down's syndrome. I say chance rather than risk, as risk is often related to something bad. The language we use often leads others towards certain conclusions:
Risk = Bad = Terminate
Wouldn't it be amazing if, along with the counselling and conversations which take place during the time after initial screening and diagnostic screening, parents were shown a picture of Emily's room?
Posted by Emily's Dad at 13:05