What it's like to be the parent of a child with a learning disability. The blog was created in 2005 and discusses anything to do with Down Syndrome

Thursday, 24 November 2005

Three things

This was originally on the BBC Ouch! Website

1. The Man with the Child in his Eyes

My wife is fuming at the messages left after blogs 1 and 2. Not because they aren’t heartfelt. We’re both delighted that what we’ve got to say strikes a chord. Thank you from both of us.No, the reason why my wife is downbeat about Down’s dad is that she thinks I’m soaking up this adoration as a “great dad“. When in fact, in reality, I left the living room in a mess yesterday, with toys scattered everywhere. It’s true. I just treat the house like a big playpen. Tonight I’m “cooking at long range” whilst writing this and I’m sure there’ll be some need to explain the mess in the kitchen later! I need to be TOLD what to do. If there is a really important meeting at school about Stan’s future, I need to be informed on at least five occasions so that I’ll turn up. The shopping list has to be complete so that I don’t stray off course and come home with inappropriate items. I suppose my love for the boys is the thing that gets me through unscathed, but it needs to be channelled!

2. Danny Mardell

If there’s one other dad that I really looked up to it was Danny. He died last week, of a heart attack. Danny was my age and Danny jnr was born with Down’s Syndrome in 1995. Danny snr used to stand up before white-collar boxing matches in the East End and lecture the crowd on learning difficulties…..talk about preaching to the unconverted. I’ve just listened back to an interview he did on the Jeremy Vine Radio 2 show in June. He was in to talk about his book, “Danny’s Challenge”. Interestingly, he was talking about “Down’s kids”, so Danny wasn’t getting the terminology right. But so what? He was a massive, and forceful, advocate for the rights of people with Down’s Syndrome. We’d like to send our condolences to his wife Carol, Danny jnr and the whole family.

3. Did they mean to say that?

As you can tell, I am more impressed with someone who actually DOES something than someone who gets the language correct. What REALLY gets me is the clichés that folks come out with in relation to Stan. It’s time for some platitudinal rectitude! So, here are my top “remarks that the person opening their gob could have rephrased”:“If it had to happen (having a DS child) I couldn’t think of a better couple for it to happen to”. Well, thanks. (ie “Phew, it wasn’t me!”)“Whereabouts on the SPECTRUM is he”. There IS no spectrum for Down’s Syndrome, Stan can do some things another DS kid can’t do and can’t do things another DS kid can do. I think they’re confusing this with Autistic Spectrum Disorder, because it’s got the word “spectrum” in it.“He’s been five rounds with Mike Tyson”. (after his heart op.) I didn’t know that Tyson did heart surgery too!“You’ve been on a roller-coaster of emotions”. Well, we HAVE, but it’s still a cliché.“Isn’t he happy?” Yes, but I want him to be a drummer in a band or a office worker. Your comments don’t include MY expectations for him.So, there you have it. At the end of the day, clichés are only being uttered because people are trying to be nice, but only time will tell if I calm down over this, and if you think you’ve heard the last of this, think again. Til next time. Raise a glass to the wonderful Danny Mardell. I will tonight. Steve.

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