My Down's Decade (Disability Dads series)
Stan Palmer has Down's Syndrome. As his tenth birthday draws closer, his dad Steve blogs about the first decade in 'Down's world', for the first of our series on dads and disability.
Ten years ago, my sometime blokey self was looking forward to a date later in 2002 when I imagined both of my perfect children, my three year-old and my yet-to-be-born son, would be sleeping through the night and everything would be going smoothly. But, now I know what I know, I'm grateful for Stan, arriving - with an extra chromosome - like a juggernaut through my hopes.
I would probably have hit middle age with an air of unattractive parental smugness had it not been for him. It's amazing what a massive change of perspective can bring.
Flash forward. On New Year's Eve 2011, a totally different me, with ten years Down's dad experience under my belt, I found myself in a pub disco with Stan, dancing to the camp classic 'It's raining men' by The Weather Girls. And I was blissfully happy.
So, how did I get from 'pipe and slippers' to becoming an active and positive 'disco dad'?
It's 2002. I'm holding my son and I've just been told he has Down's Syndrome. I place him in his cot, and I'm a bit shocked ... I'm not sure I can deal with it.
I've always been haunted by this memory - at the moment he most needed me, just after he came into the world, I appeared to be rejecting him.
When I think about how we reacted on the day he was born, I feel silly. After being told, I spent the first few hours in a denial phase, looking to see if the fold in his hand went straight across - apparently a sure-fire confirmation of the syndrome - when in fact I just needed to look at his face.
A day later, the silliness stopped. I had my 'get it' moment in Homebase. I don't know why I'd nipped out to the DIY superstore with all that was going on around me, but I did. And I fell in love with Stan whilst there.
I was at the till when I suddenly realised that I had two sons now, not one, and that Stan needed me. I got my act together just in time. Right there, amid the tools and hardware, Project Down's Dad had begun. I was on The Mission. 'The Mission' was to achieve the best life possible for my son and to teach people along the way.
If the ghost of birthday future had appeared and listed what Stan and we, his family, would accomplish in the following ten years, I wouldn't have believed it.
• When Stan was four, our experiences were turned into Petal's story on EastEnders, when a child character with Down's was born to Honey, one of the main characters on eastEnders at the time.
• He's been the star of two Christmas pantos.
• He's conquered electronic devices with ease.
• He's been horse riding.
• He's received many awards at his school.
• And more besides.
A mate of mine reminded me today that when he heard Stan had been born with Down's, he was concerned, but that he knew that I was the man for the job. You know, Down's Dad. And once I'd had the DIY store / road to Damascus moment, I suppose I just got down to it. The Project. The Mission.
In the last ten years, I've written blogs, appeared on radio shows and generally been a Down's activist much like Eva Longoria from Desperate Housewives, but without the looks. But it's equally important to have a normal family life, and to be seen to be having one.
If we all go out to eat, Stan isn't the centre of attention. He tries to be but he is included equally, one part of our family. The extended family all love Stan; they've all watched him grow up to be a cheeky, exasperating, lovely boy and they contribute to his life.
We also have support from a local group. It's great that we can all get together and share ideas, and, at times, our worries.
Looking back at this decade, there is one thing I'm particularly proud of, that's bonding with other Down's dads.
A group of us now regularly go out for a curry and it's just a really good time to have a chat, about non-Down's stuff, and about Down's stuff.
Those dad conversations have been perhaps the most intense and satisfying discussions I've had about the issue.
I've written on my personal blog about why it's important for men to have their own time to discuss issues. We lads can be a bit backward in coming forward, and it's important for us to be fully involved with schools, hospitals, doctors and all the appointments our kids tend to have. And the really good news is that, this year, Stan has a male teacher too.
The other good news is that the Mums are so impressed, they're now doing their own curry night.
At Stan's tenth birthday party, many of his classmates will be there. We use to worry that he'd never have any friends but, these days, they're queuing up. And why not? We're so proud of both of our children.
And yes, in this blog I've left out some of the difficult times because, today, we celebrate ten years of a life less ordinary. He's survived two heart operations - a common complication in Down's - he's established himself in a school where he's part of the furniture, and he's single-handedly educated a whole swathe of people about Down's just by being himself.
At the disco on New Year's Eve, the other members of our party abandoned the dance floor and it was just me, Stan and The Weather Girls. And I had one of those dad-son moments that I dared not to dream about ten years ago.
I'm going to have to break off now. I've just got into trouble for not taking Stan his drink. Instead of being the great Down's Dad on The Mission and getting mucked in, I've been caught writing a blog entry about it.
Stan says hello.
The Disability Dads series continues next Friday.
Are you a dad to a disabled child? Do you have a support network like Steve or do you go it alone? Tell us in the comments below.