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