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

Saturday, 4 February 2017

The book, the audiobook & the podcast

Down's with the kids - The book / Audiobook / The podcast

Stan's 15: why completing the crossword became important on his birthday

Happy birthday 
I was stuck on the final clue: 'Heated to destroy bacteria'. 11 letters. About five times a year I complete the i crossword, without cheating. And here I was, about to 'complete-without-cheat', on Stan's 15th birthday. But there was no way I was going to get this fiendish clue. And then I had an out-of-body experience. 

First though, going back a decade-and-a-half ago, when Stan was a few months old, we sat by his hospital bed willing him to come back to us. Down's Mum spent the whole time egging him on to recover from two bouts of heart surgery. Breathing life into him. Willing him on. 

And, 15 years later, here I was on the Piccadilly Line, and I suddenly realised that I had to get this clue. I could do it. I could will it. And I did it. And we did it in 2002. And we're just so grateful that Stan's in our lives. Happy birthday mate. 

Thursday, 26 January 2017

Podcast: Down's Syndrome and employment

This episode it's time to look at employment for people with Down's Syndrome - Getting jobs is still a huge challenge for people like my Stan (although look - he's ready!) but let's travel to North Carolina, Boston and Derbyshire to hear from people with DS who are in the workplace. Attitudes are changing and it starts, not with what barriers are in place, but with what’s possible. I've got stories about how people, who have Down's, are getting into work and becoming more accepted in society.

It's a podcast about employment and Down's Syndrome. 

Saturday, 3 December 2016

Social media muscles

At the time of writing I'm looking at the picture of a baby born the other day - the baby has Down's Syndrome. I belong to a Facebook group for parents who have children with Down's. 

And a woman joined the group during her pregnancy. She's now a Down's mum having given birth to a gorgeous bundle of joy. The mum's been deluged with good luck messages and affirmations of the type you get when a typically-developing child has been born. 

It was different when Stan was born, pre-social-media. I said in my book that Stan's arrival drew in many less flowers than when his older brother was born. The whole thing was thoroughly depressing. I'm sure many people said that Stan was lovely but we didn't have access to a community that really meant it. 

One to show the heart surgeons 
How would it have been for us if social media had been around when Stan was born and when he had heart surgery? The other day a parent posted that their child was in hospital having a similar operation to the one Stan had in 2002. As this child was small and poorly, just as Stan was, I posted the photo above, encouraging her to have faith because they can all grow up. I hope it helped. 

But for us, when Stan was born we were given a VHS tape from the 1980s depicting girls with Down's wearing inappropriately frilly dresses. Yuk. And we had no social media to draw encouragement from. 

I'm just glad that new babies are being welcomed into the world in a way that all babies should be. And I'm sure it helps the family no end. 

Friday, 11 November 2016

One for the dads

I've stumbled over an audio recording I made exactly ten years ago in November 2006. I interviewed fellow fathers about being the dad to a child with a learning disability. It never went to air...until now. As one dad says: "My son's special because he's a wonderful kid not because of the technical term."

Steve talks about this on his latest podcast 

I made the recording at the launch of a report by the Foundation for People with Learning Disabilities – Recognising Fathers.  It discovered that some dads weren't given time off work for hospital appointments, some health staff ignored the dad – spoke through him, if you like - and talked only to the Mum - and the report alluded to a sense of desperation amongst some dads about how powerless and unsupported they felt. My testimony was included in the project. 

When you have a child with a learning disability – and as that child grows up it can be hard for the parents to cope. As far as men go the 2006 Recognising Fathers report was, I think, really important, because it identified that some dads do really struggle. I hope that men recognise that they’re not alone. 

Friday, 7 October 2016

I found my place in the Sun

I was a bit nervous buying the newspaper. I was pretty sure that Stan and I would be in there but newspapers can sometimes 'drop' items if bigger news comes along. So I got a copy of the Sun and our story was featured. (Printed edition below). 

The kerfuffle was started by actress Sally Phillips who asked on a BBC2 documentary: What would a world without Down's Syndrome look like? 

Steve talks about this on his latest podcast

I found it fascinating, not just because of the stuff about Down's Syndrome. But Sally goes on to look at geneticism generally and how we're on the verge of being able to choose kids who aren't disabled, aren't ginger and are good at maths. It's just that kids with Down's on in the vanguard. You can't tell if someone in the womb will go on to have an autistic spectrum condition...just yet. But perhaps soon you will be able to and that raises divisive ethical questions.

When the Sun contacted me I saw it as a good opportunity to spread the word about Down's Syndrome. As a parent, it can be hard work but it can also be rewarding. 

Stan watched much of the documentary with us. He was interested to see other people with Down's on TV. And Sally's love of Olly, and her passion about the issue, made for a really good show. I wish there had been more on geneticism more widely. But it was a good effort and it certainly got people talking.