Today, as I write, it is my daughter Rosie’s fifth birthday. It’s been a belly-laughing joyous celebration. As I sit here typing this I’m watching Rosie, her siblings and cousins wrap the day up on the trampoline laughing till they cannot breathe. And I find myself reflecting - it’s five years then, since the worst day of my life.

Rosie being born, unexpectedly, with Down’s Syndrome was the most pivotal event that has shaped the people my wife and I are today. It was a fork in the road that redefined us, forcing us into a new frame of reference never to be undone.

I still remember part of the worst day of my life included probably the worst telephone conversation of my life. It went something like this:




“Everything ok?”


“What's wrong?”


“Jamie, what's wrong?”

“The baby….”

(To my surprise, I couldn't get the words out. I think I realised at this point that I hadn't said it out loud at all yet.)


(I'm quite sure a basket of new-born-baby related shopping got dropped all over Marks & Spencer’s floor at this point.)

“She….has…...D…...D…..Down’s Syndrome”

I think of that conversation now and all I can think of is how appallingly ignorant my side of it was.

Fast forward to present day and I’m sitting on my couch texting multi-platinum selling pop star Christina Perri and her husband in LA about support for the World Down Syndrome Day initiatives that we’re working on this year. My social media pinging constantly with communication from PR professionals and print and television media.

My wife Victoria and I have been drawn into debates about the ethics of screening, campaigned about inclusion and diversity in schools and wider society and appeared in print and on radio. The experience has transported me personally from spouting liberal platitudes on the periphery to centre-stage first-hand experience of the major shifts against society’s most vulnerable in recent years.

In Rosie’s mere five years, we’ve witnessed the decline of the public sector support that helps her across countless important areas where early-intervention can make a life-long impact. We have watched as one-to-one support in areas like communication changed to become one-to-many group sessions then virtually nothing at all.

On the flip side, it’s been heartwarming for us to see our schoolteachers becoming perpetually more creative with their resources. No-matter what happens, our experience has been that Rosie’s school never lose sight of prioritising the provision of the right learning environment to all children regardless of their needs, and worrying about how it will be resourced next. Something which cannot be easy on a backdrop of these ever increasing constraints. I guess “easy” would be taking in only “easy” kids.

Nonetheless, creativity can only go so far. After a small number of decades of change that has resulted in those with Down’s Syndrome going from lifelong institutionalisation in the so-called “Asylum for Idiots” to a present day where independent living, work, marriage and even degree-level education for the highest fliers is a reality, it seems that the clock is under threat of turning back in the UK. Before long headteachers targeted on academic attainment may be forced to discourage those with special needs, integration will diminish, the discrimination of the past could reappear along with the government institutions.

We got first hand experience this year of an example of the creeping government contempt for society’s most vulnerable when we encountered the dreaded “DLA” application process. Not something I’d ever even heard of before Rosie came along and, thankfully, something most people never have to encounter. DLA (Disability Living Allowance) is also the rubber stamp from the government on a child’s additional needs that opens up access to the services that will help them throughout their life.

The first question sets the tone - enquiring whether or not your child is expected to live beyond six months so you know which section to fill out first.

The robotic nightmare continues from there, forensically analysing your child’s most negative traits to spot holes in the government’s obligation to help them, resulting in a document that would break your foot were you to drop it. Right now thousands of parents up and down the country are pulling together the exact same document in the exact same way in an attempt prove what are already established facts about the effects of one of the most well known conditions in existence. Then dealing with assessors so knowledgeable that parents report being asked questions as cerebral as “So, when did your daughter catch Down’s Syndrome?”

This year we’ve produced a video called “50 Mums | 50 Kids | 1 Extra Chromosome” which you can see on the Sunday Herald website right now. It shows 50 mums with their children who have Down’s Syndrome having fun doing “Carpool Karaoke” lip syncing to the Twilight Theme - A Thousand Years - by Christina Perri. The mums are also using Makaton Sign Language - the simplified version of British Sign Language, popularised by Cbeebies star Mr Tumble, designed to aid speech development for people with communication challenges.

I’ve been blown away by the community aspect of what made this possible. From a suggestion of a mum on a Facebook page we put together a few instructions, set up a dropbox account and a deadline and the videos started rolling in. After I spent several late nights pulling it together and privately shared the first draft behind a password we got 1500 views in 24 hours with virtually everyone crying happy tears within moments of watching. We knew we were onto something that crossed into a mainstream audience - simply, parents who identified with other parents who loved their kids irrespective of their differences.

The mothers on the Facebook page where the idea began then got together like a PR army with astounding consequences - a skilled and tenacious group of over a hundred people connected only by having a child with Down’s Syndrome. They wrote press releases, contacted the media and celebrities to promote their video as much as possible. Meanwhile, I took a chance and attempted to contact Christina Perri, the artist who’s song featured in our video, via her husband’s Twitter account. Not only did the couple declare their support but, in a serendipitous turn of events, it turned out that he himself is something of a Down’s Syndrome advocate, having made the iconic video “More Alike Than Different” for the exact same event - World Down Syndrome Day - 3 years ago.

Our video only went live on Friday and has got nearly a million views already, sending the positive message that I have always tried to get across in these articles - this condition is not something to be feared. People don’t “suffer” from Down’s Syndrome - 97% of people with Down’s Syndrome and their siblings and families report that they are happier for having the condition in their lives. So not only is it the case that “it’s not as bad as you think”, it actually brings its benefits and is likely to enrich your experience of life and that of all of your children. Hence our video’s campaign message: #wouldntchangeathing.

What an odd paradox then when you consider a similarly high statistic - 94% - of parents choose termination when they receive a Down’s Syndrome diagnosis during pregnancy. Imagine for a moment removing all of the stigma in your mind and just deal with the evidence - 94% of people are opting out of something that has a 97% chance of making them happier.

That’s not a criticism of those who make that choice. I’ve always been quite honest that, had I known, I’d probably have wished to make it too. The difference is that I now realise the ignorance that would have driven that wish. I am a proponent of people being able to make an informed choice and these statistics tell me that something is very wrong with the provision of information on this condition as it stands today. Because we, and every parent in our circumstances appear to be saying the same thing. They all, virtually without exception, want to shout from the rooftops how different this experience is from what they expected. They often describe it (given the odds of having a child with DS) as having “won the jackpot”. They want to let people know that it is not only fine, but good. For all the minor differences, our lives are far more normal than they are different. Something I am reminded of at dinner-time every evening when having to tell all three kids to stop saying “poo” at the table. And where our lives are different - I now realise that different does not equal negative. Differences can be highly positive experiences too.

I don’t want to sugar-coat things. Clearly there are challenges, of course there are. The type of aforementioned government battles you face are a good example. But there are challenges with all children. Your challenges are your life. However, now, when I see the ripple effect on others who experience Rosie - like her friends at school and teachers - I believe that, on-balance, the benefits of diversity outweigh the challenges that her intellectual learning disability brings. Intellect, in some ways, is a subjective notion. Aren’t we all, afterall, just above-average-intelligence monkeys ourselves? Sentient sacks of water wearing makeup and jeans with our highest ranking monkeys focussed on blowing things up? At least Rosie brings joy. She brings a character that is a force to be reckoned with that carries no-end of high-jinks, mischief and hilarity. Provided her condition in itself brings no pain then I struggle now to think why I would have an issue with that.

I often imagine life as the ultimate, cosmological fairground ride - as if we're all beings that chose a bespoke ride where you only get one go. I wonder sometimes, if that were true, what would I choose from the menu? Would I choose to be a Trump-esque billionaire surrounded by limitless money, a private airliner and sycophantic "yes men" at the expense of genuine friends and relationships? Definitely not. But, knowing what I know now, would I choose this journey I'm on? Honestly... I think I would. Every time.

Our fears in the early days were things like: Will she speak? Will she learn? Will she be totally dependant upon us forever more? How much of a drain will this be on our lives? None of which look like they will play out. Ironically, while we were worried about never-ending dependency, I’m quite sure now that when she leaves home we’ll be grabbing a leg each attempting to convince her to stay.

In reality, our energy now goes on the external environment. So it turns out that, while I thought I'd be teaching my child about the world, I find my energy goes into teaching the world about my child. One example of which you are reading right now.

Those of you who have followed my previous articles on Rosie’s birthday and World Down Syndrome Day these last five years may recall my description of one of my ugliest thoughts - comparing the experience to that of a new pet. In an attempt to get my head round things I thought “They’re not as smart as us but you can love them all the same.” Even now I still shudder at that.

I’ve learned that it’s possible to look up to your children. I find myself attempting to learn from my seven-year-old daughter Abigail when I see how she automatically sees past other’s disabilities at some of the events we attend. I want to take notes. Grab her formula. “How DID you just do that?” I think. I love that neither she nor her three-year-old brother Gregor nor their cousins and many friends will ever be cursed with the affliction of learned prejudice - simply because they have Rosie in their lives.

A friend told us the other day that her son, who has known Rosie since birth, simply couldn’t understand why she was in tears watching our online video. Because according to him (said with age-appropriate angst and disdain) “It’s only a bunch of ordinary kids singing in the car with their mums!” It’s an odd-sounding triumph, but it’s that type of nonchalance from someone from the next generation that simply cannot help but see Rosie first before her condition that has me high-fiving inside.

I read a positive quote online recently, which I Googled wondering what insightful scholar had said it. The quote was “we would never learn anything if we were all born the same.” I thought quite deeply about how the connotations of that phrase were so literally true.

When I couldn’t find it anywhere I went back to the source where I had originally read it. The woman who posted it told me that the quote was actually from her eight-year-old daughter, Emme.

How can someone so young be so much more insightful than you or I? Because Emme’s sister, Thea, has Down's syndrome. Well, fancy that.

To watch the video Jamie helped create for World Down's Syndrome Day, which falls on Wednesday March 21, go to