down's with the kids

Monday, 14 November 2005

First post


This was originally on the BBC Ouch! Website

I fell in love with Stanley in Homebase. The thing was, he wasn’t even there. It was 24 hours after he was born, and I’d spent that time wishing he HADN’T been born. Stan’s got Down’s Syndrome. My love for his brother was unconditional, from the moment I saw him. With Stan, it was just……..delayed for a day. Some people go into Homebase and think: “Oh, I must remember those plugs”. I thought: “My God, I’m in love with him”, because I suddenly realised that despite Stan’s disability, here was a little boy who needed a family. I must tell the manager. Maybe he'll give me free plugs for life! I can’t imagine why I had to pop into Homebase the day after the one of the most dramatic days of my life. I say “one of the most”, because ten days later, we were told Stan needed heart surgery. You see, with Down’s Syndrome, you often get cardio complaints as well. Now Stan is almost four, goes to the nursery attached to his brother’s school and will be included in Reception, school uniform and everything, in September 2006. He’s just had his school photo taken with his brother, a big moment for us because in 2002, he nearly died due to the heart problems. We want Stan to be treated as normally as possible. This is a brand new challenge for me because I’ve spent most of my life trying to be different. At university I’d walk around in ripped jacket, as a symbol of my individuality. (OK, perhaps I shouldn’t have bothered!) These days, we would rather not draw attention to ourselves. We get stared at enough out in public, or people say: “Isn’t he cuddly and funny?” Well, he IS. But he’s also: Telling me he loves me in sign language, stealing items from the kitchen and hiding them in impossible-to-find places, making great progress with his key worker and developing friendships with his schoolmates. I’m expecting him to do more than to be the “happy child”: I want him to drive a car, learn a foreign language, play the Glastonbury festival……If my expectations are shot to pieces, it’s only me that gets hurts. That’s not going to stop me having massive hopes for his future. Welcome to my blog. The Wizard of Ouch has asked me to write it, from the viewpoint of a father with a child with a disability. Do let me know what you think. Steve

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