Seb is 7 years old.
When he was born I was shocked to my core when we were told he had Down’s syndrome. I knew nothing about the condition, aside from outdated assumptions and stereotypes, and I was full of unnecessary fear of what the future had in store for us. I imagined a lifetime of “difference”, disability and exclusion. In those early days every time I looked at my baby I saw “Down’s syndrome”. I missed precious time with my first born baby worrying needlessly.
The reality could not be further from that vision. We lead a really typical family life together with Seb’s Dad and two younger siblings. We face the same joys, wonders, challenges and experiences as any family, I don’t regard Seb as “disabled”, he is just Seb. I wouldn’t swap our lives or anything about it (well, maybe less washing would be good).
I started this page to allow people to see a snapshot of our lives together. I like to think it may help just one person deal with a new diagnosis and not miss out on those magical first weeks. I also hope that it spreads a wider message to those who don’t know much about the condition, or maybe have the outdated view that I had.
Seb is a typical 7 year old who attends mainstream school, loves reading, football, chips and ice cream……he is an absolute whizz on his scooter and hates having his hair washed. All of my children are a reflection of their family and their upbringing, they are as much alike as they are different.
Seb is not a list of characteristics in a textbook. He is not a condition. Or a label. He is more like our family than anyone else with an extra chromosome 21. This is what I want to communicate on this page.
I am passionate about inclusion – in schools, in communities, in sport, in advertising – in everything. I believe inclusion will breed a new generation of acceptance – people who will value every person on this planet as an individual.
As a result of my passion for inclusion and campaigning, Seb was the first child with Down’s syndrome in the UK to star in a major TV ad commercial and Christmas campaign for a high street retailer (M&S). He has also modeled for Jojo Maman Bebe, Kinder chocolate, the Sun newspaper and Mencap. After lengthy discussions with various retailers and creative agencies, and thanks to other warrior parents and champions, both here and globally, I am delighted to see more and more retailers following suit including Boden, the Co-Op, M&S Ireland, the Early Learning Centre, Boots, Mothercare and Sainsbury’s.
I have also been honoured to visit number 10 Downing Street to meet Samantha Cameron, as well as a trip to The House of Lords and the Lord Mayor of London. I am an ambassador for the Special Olympics, GB and a patron of Mencap’s Musicman Project. I was also invited to speak at a Tedx event organized by King’s College London on the subject “Beyond the Genes” and I am a regular contributor / writer for Mencap, The Huffington Post and BT.com.
But all you really need to know about me is, I am a mum.
Force of Nature 
Hi Caroline, I’ve just read your article for Ouch and, after wiping away the tears, just had to get in touch. My older brother has Down’s Syndrome, and you have expressed so beautifully how I always felt growing up … why did adults make such a fuss? He was just Ben, my big, quirky, funny, loving brother who was always up for making camps under the dining table or dancing wildly with me to my ‘Top of the Pops’ records (now I’m showing my age!) I am now working for the online community at Scope, and would love you to write a guest blog for us if you’d be up for that? Best wishes, Emma
LikeLike
Hi Emma, loved reading about you and your brother. Would be delighted to write something for scope. I have had a similar contact on twitter so will direct message on there as presumably you’re the same leeson! 🙂 x
LikeLike
I just wanted to get in touch to say I read your piece on the BBC Ouch Blog (http://m.bbc.co.uk/news/blogs-ouch-31421239) and thought it was fantastic. Nothing much to add – just wanted to let you know…thanks!
LikeLike
Thank you for your kind comment, I really appreciate you taking the time to write it (and read it!). So often my posts are responded to by trolls which can be disheartening and it’s uplifting to hear positive feedback x
LikeLike
I came across your blog on the BBC. I have a son who was diagnosed on the ASD spectrum. I live in Cyprus and people are very hush hush with disabilities and anything that is not conceived as “normal”. I have had to fight against looks and comments on his behaviour for the past 4 years when we go out. But it does not change the fact that he is my son and I love him. Children are the most accepting and often ask me why he doesn’t talk or way he likes to swing things continuously. My thinking is to educate the parents and the other children that not everyone is the same and you should not judge someone just by looks or behaviour. We mummys must stick together x
LikeLike
A lovely comment, many thanks for taking the time to write it. Yes I agree, united we are a string force and, as parents, we tend to be the most knowledgable of these things! x
LikeLike
Hi Carolina,
I think your blog is very good and that your son is beautiful.
We also have a child with Downs, you are very lucky that your son is high functioning, we have not been so lucky, we love Daniel who is going to be 12 years old this year, however he is non verbal, still in nappies and goes to a special school, he also has Autism. On top of this we have another son who is autistic and another one with dyspraxia. We used to go to the downs groups but stopped going after they started staring with pity to our son, we could not believe it. I am not trying to complain or take anything away from you, but I just wanted to bring to the table that Downs can be a very debilitating condition, we always thought our son would be talking etc…. and even people who have disabled children can be cruel. Finally just to add insult to injury, non of our extended family give a damn
LikeLike
Thank you Amir for taking the time to write your comment and kind words. I am really sorry you have not had support from your family and am saddened too ther those within your DS Community have not supported you either. I have had one experience of a cruel comment from a mother of a child with special needs. I was so upset that someone who I expected to have the greatest empathy had the least. I concluded she must not be a very nice or secure person herself. I am mindful that there are children who are dealin with bigger challenges than Seb wrh their health or development and I would hate to appear insensitive to that. It does however reinforce the idea that ALL children, special
Needs or not, are individuals. We are all different. I hope you get some support for your lovely family soon x
LikeLike
Just read your lovely post on BBC, what a super pair Seb and his little brother are, a credit to you.
LikeLike
Thank you Josh and for taking the time to post a comment. Lovely to hear such encouraging feedback!
LikeLike
Hi Caroline,
I’m a producer at BBC Brasil and we would like to republish your post on BBC News on our website. It is a very touching and inspiring article that we would love to translate to our readers, as we do regularly with BBC News’ content.
For that, we need your permission to use the pictures posted with it as well to send them to our media partners (some of the largest portals in Brazil), which republish our content, and to promote the article on our social media channels. Please, could you write back to me when you read this message?
Thanks.
LikeLike
Hi Rafael,
Would be delighted for you to use it and give full permission for you to use the photos. Best wishes, caroline
LikeLike
Hi Caroline
We just came across the article you wrote on the BBC – and tweeted about it https://twitter.com/adduk
ADD International has projects in some of the poorest countries in the world aimed at changing attitudes towards people with disabilities, also by promoting inclusive education. We love how passionate you are about this! Keep up the good work.
Virginia (admin)
ADD International
LikeLike
This is amazing to read, Virgina. What a great thing you are doing. I am aware that we are relatively lucky in the UK with how much progress has been made, compared to other countries. Thank you for taking the time to write your comment, and well done. Best wishes, caroline
LikeLike
Fantastic article on BBC Ouch, which i’m sure would make many have a think about their own experience meeting children with disabilities. Love the photos, your little boys are gorgeous. Thank you for sharing your story and spreading awareness. Maria Coyle, information editor, Brain Injury Hub http://www.braininjuryhub.co.uk
LikeLike
Thank you Maria for taking the time and trouble to leave a comment. I have been so delighted with the response to the article! Best wishes, caroline
LikeLike
Hi Caroline,
I write for a national newspaper’s magazine supplement and we would love to feature your inspiring story. Please get in touch so we can discuss this further.
Thank you.
LikeLike
Pingback: Meet the adorable 7-year-old with Down’s Syndrome who Marks & Spencer just couldn’t say no to
Hello Seb’s Mum. I recently read an article on The Guardian about Down’s syndrome in the UK etc and was appalled by the abortion statistics and dreadful lack of support for those with Down syndrome in their families. I work and live in Brazil on a social/cultural project for all kinds of disabilities called Embaixadores da Alegria. Every year we take 2,000 people (1,400 with some form of disability) to parade in the famous Rio de Janeiro carnival and throughout the year we provide free workshops. I could never imagine not having my friends with Down’s syndrome in my life. They are all such loving and honest people. It is amazing that quite often they are far more human with their extra chromosome than those of us who only have 20. I would love to exchange ideas as we plan on working in the UK. my email is eusouembaixador@gmail.com. I also work with the Special Olympics here in Brazil. And well done on your blog.
LikeLike
Hi Caroline, I just heard you speak on TV about your son Seb and it so reminded me of my gorgeous grandson Thomas, now 13. Like Seb he went to mainstream school and was a popular member of the school. When he moved to Secondary, I asked his younger brother whether it felt strange not to have Thomas at school. “yes” he said. “No-one at school talks about him now.” I must have looked puzzled because he told me that his brother was very popular and people were often talking about what he had got up to! When Thomas reached 10, my daughter-in-aw said that, if she had known how things would turn out, she would not have been so distressed when he was born. Thomas has a large and loving extended family and has enriched all our lives.
I have had longer experience of how a person with Down’s Syndrome can affect a family as my youngest sister, born when I was 16, also had Down’s Syndrome and has been a big part of my life, especially after my mother became ill. Sadly my sister died, aged 50, last year but when my siblings and I looked back on her rich life, we realised that we should not feel sad. This lady worked as a volunteer in an old people’s home, learned to ride a horse and play golf in her late 40s and moved into a supported living house four years before her death. She was so proud of learning new skills!
I’m in agreement with you. Early diagnosis of Down’s will result in far fewer of these special people being born and we will all lose so much if that happens.
LikeLike
Thank you so much Sheila for taking the time to write your comment and it is really lovely to hear about your family. I feel sad that most people will never know or believe how rewarding it is to have a child with Down’s in their lives. I feel blessed to have Seb in ours. Thank you for sharing your story.
LikeLike
Hi there, just saw you on Channel 4 news and thought you spoke with real clarity and calm. I don’t have a child with Downs but was completely engaged in your responses to Jane Fisher’s point of view: rarely do people get their point across as clearly as you. Just wanted you to know…
LikeLike
Thank you, what a lovely message to write, very kind of you to take the trouble to write it! i felt very nervous and missed so many points i wanted t make but live tv and being faced with a pro choicer on such an emotive subject made it hard!!
LikeLike
Hi Caroline, I wanted to say I thought you were excellent on C4 news last night. I only got to see it tonight (my wife taped it for me) as I was stuck at Gatwick airport last night. Yes you were nervous, but who wouldn’t be? Your message came across well and struck a chord with my wife and I. I put my airport time to good use to start to write a blog about my experiences, having been thinking about doing something like this for a while. It’s at http://www.downwithdad.com would be good to hear your thoughts as I haven’t decided if I can put my personal thoughts out there or not.
LikeLike
what a really lovely message, thank you. i WAS very nervous, i didn’t know until i got there that the other lady was going to be on (stupidly should have thought that one through) there are a million things i wish i had said and i hate that i got a little tearful near the end but hey, i am only human and i am not an expert or a media professional, just a mum! it is such an emotive subject, as you full well know. I have just read your blog and its wonderful. it made me well up and i could relate to it so much. there is such a massive gap and need for a blog from a dad’s perspective, i only know of two others so go for it is my opinion! thank you for getting in touch and look forward to reading more from you…
LikeLike
Thank you Caroline, I’ll give it a shot. Terrifying putting my thoughts down on paper (never mind on tv!!). Dave
LikeLike