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