We have just had a very emotional visit to Seb’s great grandma. At 99 (and a half!), we are never sure how we will find her and her health has markedly deteriorated in the last year. This year is the first year she will […]
All posts filed under: special needs
New Non-Invasive Testing for Down’s – Channel 4, October 2015
I was invited to appear on Channel 4 to speak about the potential implications of the new testing for Down’s. It was massively last minute and I arrived, straight from work and school pick up, at the train station with the clothes I had been […]
He’s Not a List of Characteristics….He’s My Son – Guardian October 2015
We were delighted to be involved in this wonderful piece written by journalist Olivia Kaye. It is wonderfully balanced and true to our words. Thank you Olivia and The Guardian and the other advocates involved. The full piece is here: http://www.theguardian.com/society/2015/oct/17/living-with-downs-syndrome-hes-not-list-characteristics
Seb, I’m sorry………
The Timehop / Memories apps are a nice touch. I’ve been on FB a long time and it often chucks up pictures and memories I had long forgotten, or even deleted. Photos and conversations from the past that often make me smile. But one just […]
Film Night…..
Every year our school PTA puts on a film night. The kids put on their pyjamas, bring a teddy and a pillow, and turn up after school to watch a film and eat treats with their friends. It is a really sweet and special evening […]
TESTING FOR DOWN’S – WHY DO I EVEN CARE?
Unless you have been living in a cave with no wifi access for the last few years, you will have heard all about the new prenatal testing for Down’s syndrome. Hailed as a modern medical miracle, the fact it is non-invasive ultimately means less “healthy” […]
Seb has made me cry today. Twice.
Seb has made me cry today. Twice. The first time was this morning at school drop off. What should, in theory, now be an easy thing has turned into a bit of a headache as Seb is very reluctant to go into his class knowing […]
MY FERAL HEART – “A FILM ABOUT ABILITY, NOT DISABILITY”, by DUNCAN PAVELING
Whilst I am not an advocate of the line “everything happens for a reason” I certainly believe that everything thrown at us shapes, moulds and influences who we are – and there is no doubt that life guides us down certain paths and chance meetings […]
Loose Women
Seb and I were invited on to speak to the Loose Women panel on Wednesday 10th June. The whole invitation came about after a thank you note I posted on TK Maxx’s website went viral. The interview felt like a car crash at the time, […]
“MY FERAL HEART” – Tiny Teaser (and ketchup for breakfast)
We have a running joke in our house that if Seb *could* have ketchup for breakfast, he would. Well, today he did….and chips….. This morning we had the absolute pleasure of meeting writer and filmmaker Duncan Pavelling, in my home town in Essex. A chance […]
From the Asylum to the Palladium – The Music Man Project
Seb and I spent a wonderful afternoon yesterday with David Stanley, Founder and Director of the MusicMan Project, and Jenny Hitchcock, the project’s Regional Director. Based in the place I still call “home”, The Music Man Project is run by Southend Mencap and Seb and […]
Graffiti on His Precious Book
It’s just a few scribbles but the words and the handwriting from Seb’s little red book are indelibly stamped in my memory. I stared at them so many times and for so long. Graffiti on his precious notes. Holding my breath so as not to […]
