It wasn’t so long ago that babies with Down syndrome were immediately placed into institutions, and hidden away from society like dirty little secrets. They were viewed as something so terrible that shutting them away was viewed as the best option. But not anymore. NOT ANY MORE!!!
Now we get to share our children with the world every single day, and we get to show society the truth about Down syndrome. This opportunity has come in the form of social media, and I believe that it has had such a huge positive impact on the lives of those with Ds.
There has been some parent bashing on the internet recently, claiming that parents like me are taking advantage of our children and exploiting them. We’ve been accused of being in it for the fame, or the ‘likes’. So I gathered up a group of my favourite advocates and we want to tell you exactly why we have chosen to share our families with the world.
Hayley – I am River
When I first started writing it was because it helped me. It helped me process the emotions I was going through after learning my son had Down syndrome. I found that by getting it all out on paper I was able to stay positive and focus on our lives positively.
After learning that River had Down syndromes I did the worst thing I could do. I Googled ‘Down syndrome’. I found page after page of medical information, lists of negatives, and documents full of scary and very much out dated information. It was terrifying. And then I found blogs and Facebook pages and the whole experience changed for me because I was able to see reality. I was able to see families who were living what I was living and were really happy. I was able to see children who were thriving and achieving things people tell you are impossible. I was able to see the positives, and even when I saw the negatives I could see families who were coping and living fulfilling lives. I was able to see families who adore their children. I was so thankful for finding these websites and to the people who had created them, and I wanted to do the same for other families who may need that support. I really hope that we show people that Down syndrome really isn’t so scary at all.
I hope through sharing River’s life and our family, I am able to show people that being different does not mean worse, it just means different. I hope I am able to show people exactly what my son and others with Ds have to offer the world and that learning disabilities are really nothing to fear. I hope I can make other families experiences just that little bit easier.
And I hope one day when River has his own voice, that he is able to show the world himself just what he has to offer. I hope him and his brother are proud of me for trying to do whatever I could to raise positive awareness, and I hope he understands that I did it all for him. I don’t do this for fame, it was never about that for me. I had no idea we would reach so many people and gain a following like we have! But I would be lying if I said I didn’t want people to read what I have to say, because the more people we reach, the more people will learn. And that’s what it’s all about isn’t it? Learning and evolving to be the best people we can be, and that includes accepting others who are different from ourselves.
Sarah – Don’t be Sorry
I started writing initially, as I found it cathartic. An outlet of sorts I guess and one where I found I was able, to get all my thoughts and feelings down on the page. Once it was written, I felt somehow I could start making sense of it all. When I started writing, I didn’t think for a single second, the blog and social media pages would attract as many followers as it has. I just thought I’d share it with a few friends and family, who perhaps might have been interested in those initial feelings I’d first experienced, post Oscars diagnosis and that was that. But over time I’ve realised the blog and pages are as much about me, as it is about others. It’s about reaching out to new parents who may currently dealing with a pre or postnatal diagnosis of Down Syndrome. It might reach out to others who have a child with additional needs themselves, who somehow find my words relatable.
I’m told it’s read by professionals – doctors, nurses, speech therapists, occupational therapists, physiotherapists, SENCos, teachers, learning support assistants etc, who now see things from my perspective. A mum of a child who just happens to have Down Syndrome. I’m also told it appeals to others out there who don’t have any links to SEN but who have decided they might quite like to learn more. Those people mean a lot to me, for they are the people we meet in the street, in the shop, at the playgroups and in the parks and by following a blog like mine, now feel confident they have a better understanding.
So what would I say to the person who said that I’m exploiting my child by sharing his life on social media? I’d say that I hope that as Oscar grows up and sees exactly what I’ve done, I hope he understands it came from a good place. That it wasn’t about exploitation. It was about showing others how brilliant he can be. With the right support network, a little time, a little patience and a bucket load of love…. I hope he sees it was only ever about dispelling any misconceptions people might have about my beautiful little boy.
Carly – Force of Nature 21
When Seb was born I was completely devastated by his diagnosis. I had never known anyone with Down’s syndrome and I imagined a lifetime of “difference” and sadness. Reality could not be further from that vision. As I began to delight in the wonders of my little boy, I started to think about how I could share it wider and educate others that Downs syndrome is not something to be sad about, or fear – and that is when I started blogging and using Facebook to share my posts, and our lives together.
Seb has taught me, and those around him, so much. He is a really emotionally intelligent little boy with a sharp sense of humour who wafts an air of magic and mischief wherever he goes. He is also really sporty, something I was really keen to share with people. He was selected to be in his mainstream school football’s A team and can run as fast as his peers. Stupidly, when we were told he had Downs, I assumed he wouldn’t be the sporty boy I imagined I would have!
When Seb was younger I used to wonder why there is still such a negative and outdated view of Down’s syndrome – there are still so many myths and stereotypes, and despite my initial fear, Seb is undoubtedly one of the best things that has happened to me. I realised it was because I hadn’t grown up with anyone with Downs syndrome and never saw anyone in the media or in advertising. This is why I am so passionate about inclusion – in communities, schools, life – and what prompted me to contact retailers and push for more inclusive advertising. In 2012 Seb was in the M&S Christmas TV Ad campaign and all their supporting marketing. The response was massive – but also many people commented that he didn’t look like he has Downs syndrome. It was such an irony – as this was my point! Seb HAS Down’s syndrome – but he looks like Seb!
Amber – Baby Lemonade Blog
I believe social media is much more than sharing a simple picture of a smile.
It connects, it reminds, it reveals.
Social media is a tool & I use it to share our #LifewithDS because the last thing I want for my baby girl is for her to grow up in a world where society looks down on her & assumes her abilities (or lack of). Wouldn’t you feel the same about your child?
Kara is amazingly smart. You might be surprised by that because she has Down syndrome & that’s okay because that’s what we’re working to change. She is 17-months old and knows over 20 signs, understands countless words & phrases and loves singing several different songs. Just because she’s hitting some milestones later than you’d expect, doesn’t mean she isn’t busy hitting others.
This is why I share what I share. So maybe when you run into me & Kara (or someone else with special needs) on the sidewalk, you look at them as a person first. I don’t think I could possibly overshare that concept on any platform.
Kimberly – Colton Strong
It took months for me to come to the decision to begin a public page for Colton. I had finally decided that the pros for our family outweighed the cons. Firstly, it’s simply easier to update those who care from a page that they “choose” to see. A place where the central focus would be on Colton. Another reason is that Colton’s rare condition made it extremely difficult for me to locate others in our situation. I had thought making a searchable page would instead bring others to me (& it worked.)
Putting Colton in the spotlight was also a way to bring awareness to not only his conditions, but to the “hospital life” as well. Showing others that their normal is not the only normal. Being in our situation can also be lonely and updating actually turned out to be very therapeutic, like journaling.
Lastly, I thought it would’ve been a way to remind the future Colton that even on his rough days, he is & has always been so very strong & greatly loved. Now, with his passing, we have no regrets with the decision we made & we return to his page often.
Tom – The Future’s Rosie
My wife and I found out during the pregnancy that our baby would be born with Down’s syndrome and I recall it being a very distressing and confusing time initially. We were being constantly reminded by healthcare professionals at each hospital visit that we could terminate the pregnancy at any time – even as late as 36+ weeks. That wasn’t an option for us personally and I wanted to find out as much as possible about Down’s syndrome to try and prepare, to put a positive spin on what I thought was terrible news at the time. It soon became apparent that attitudes were very negative, particularly in the healthcare professionals we had to deal with, stating an endless list of potential health problems and issues which she ‘may’ have. We wanted to read positive real life stories from a parent’s viewpoint and found very little available at that time, with even less coming from a father’s perspective so this is one of the fundamental reasons I starting writing my blog The Future’s Rosie and sharing stories about her on social media. I hoped (and still do) that by writing so honestly and openly it might help one or two other new parents feel less overwhelmed after a Down’s syndrome diagnosis.
I would love nothing more than a world where I didn’t feel a genuine need to share our life with Rosie to help break down barriers and show a life that (in the main) is relatively normal and a far cry from the life I had feared – the fact I don’t blog about my two sons who don’t carry a ‘label’ speaks volumes of where we are as a society in terms of acceptance and understanding.
Sharing thoughts and images of Rosie on social media helps educate those that know very little about DS (like myself pre-Rosie) and maybe even make some people think twice before judging the worth of someone with DS. Rosie teaches myself and those around her everyday about the wonders of her life – she’s also so darn cute it seems selfish not to share her with the world!
Courtney – Bringing up Emmy
Emmy really is my purpose for using social media, and I’ll do whatever I can to advocate for her and all her friends. Her milestones are huge and I want to show them off to the world! I have lived under these suffocating blanket statements since before her birth. She’ll never do this, she’ll always do that; her tongue this, her eyes that; she’ll have this; she’ll never have that. I’ve simply had enough. By sharing in her milestones and her accomplishments, I’m cutting holes in all those blankets. Pretty soon there will be nothing left of those statements but a bunch of hot air. There will be a day when my little girl will look back and see how much her Mommy, Daddy, and sisters adored her. She will see how crazy we were about her and how we believed in her from the very beginning. On that day, she’ll already understand who she is and she will already be confident in our love for her. But to look back and see that we were always her champions will give her all the more strength and perseverance.
Emmy doesn’t have a voice yet. When she does, I have no doubt that she’ll use it to change perspectives and inform in her own perfectly beautiful way. But for now, I’m her voice to show the world anytime she breaks out of an ill-conceived, fragile, or misinformed mold. Anytime she displays her own personality, her intelligence, her adorableness, I’m going to share it. The world needs to see that she is unique and perfectly made.Before her diagnosis, I knew absolutely nothing about Down syndrome. If I did hear anything, it was negative or ugly, filled with low expectations for my child. Emmy does more at her age than I was given hope for her to do. I know I’m not the only person out there who has a child who wasn’t given much hope to succeed.
I share because there are countless other Mommas out there just like me, and it feels really good to know that there are others out here who understand. We are not always up. We face sadness, disappointment, and heartache. But we are a blessed minority to take every single moment captive and celebrate those little moments, which are never really little.
Harps – Baby Brain Memoirs
I’d started my blog before I knew I was going to give birth to a baby with Down Syndrome – long before then. I believe in “everything happens for a reason” – I truly believe I started my blog when I had Arjun, my first born, to connect with other mothers suffering with post natal depression but also to build a foundation (that I didn’t know at the time) which would quickly enable me to be connected with other mothers that had been in my shoes when receiving an unexpected Down Syndrome diagnosis. Those mothers that quickly held my hand during a very dark period. I had open access to thousands of children just like mine and was able to take a glimpse in to our future and see that life wasn’t over.
Social media is important to me because I want to be able to do the same for other parents with a wide and accessible reach. When we first had Saajan, I had no desire to attend support groups, my support group became the wonderful people I met through social media! I can’t change Saajan but I wish I could change the world for him – one person at a time, we are most definitely trying! The power of social media.
3 thoughts on “This is why we choose to share our children on social media”
Loved reading all your pieces about why you have blogged. We had Bruce in 1984 long before social media and the Internet was around. Our experience of DS, before Bruce, was very limited and, in my case, had been the two girls (twins) who lived on my estate who we saw very rarely when they were playing in their garden.
It took a week for the hospital to give us the news about Bruce. He was floppy after the delivery, which had been a bit of a struggle as Tracy had a cold and he kind of slipped back into his home before finally bursting out. So we just thought that was why he was floppy.
We had dreams of how he’d be, what we wanted for him as he grew up when Tracy was carrying him, we’d talked about names but couldn’t decide on one we really liked.
Once we got the news, the pediatrician came to see us at home as she wouldn’t tell us over the phone.
As we had been at home with him for the week, with the nurse popping in to see Tracy and Bruce, we kind of knew something wasn’t quite right as Tracy had a daughter who was now 6 and I had been around enough of our family to know what a baby was like and how they behaved at the new born stage, also I’m the eldest of four. It was just a case of what was the diagnosis. It was no use tying ourselves in knots as to what it might be, but it doesn’t stop you imagining all sorts of things.
So the news was he had Downs Syndrome. Then followed the list of problems we could potentially expect both physical and mental. The worst was when we were told he could be life limited and may not even see his teens. Way to destroy the dreams and ambitions of two young parents.
It got worse as our GP came to see Tracy and Bruce a couple of days later and referred to Bruce as a Mongol. Tracy grabbed him by his collar and removed him from our home before calling me in tears. I rushed from work and straight into the surgery, it was in same block of flats where we lived. I stormed into his office and grabbed him by the lapels and went full mental Scotsman on him, verbally. Needless to say we changed GPs.
Anyhoo, Bruce has completed school, college and has gained an NVQ Level 1 in landscape gardening thanks to the support of the Shaw Trust who he worked with as a volunteer when they ran the gardening at the local cemetery. Ironically a place we were led to believe he was likely to be in by the time he was a teenager, if he lived that long! (Dark sense of humour).
At 33 he has done many things that some his age haven’t he’s gotten his yellow belt and was moving upto orange at Karate but due to a hernia of the stomach muscle he had to retire. He has driven a car, age 13, whilst sat on my lap, flown birds of prey, is an accomplished horse rider. Almost drowned me when we tipped a jet ski, has been back on a jet ski to overcome the fright of the tipping. Plays football with a group of mixed special needs adults. Has been to many football matches and followed my refereeing career and learnt the Laws of the Game.
Has two tattoos, wants more, can sign and uses the swearing signs to me when I upset him. Loves a drink and can hold his own in the best of company. A wicked sense of humour, usually I’m the butt of his digs. Can cook a mean spaghetti bolognese, and will make any dish with some guidance.
Wherever we have taken him in the world he has captured the locals hearts with his politeness, courtesy, humour and helpfulness.
So despite the doom mongering of the medical profession at the time, which doesn’t seem to have changed that significantly, we have a great man. One who has achieved much and continue to do so. One we are proud to call our son and who constantly surprises, annoys, delights and loves us. A man we would not trade even if someone said would you do anything differently.
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A brilliant post. I can relate to so many of the reasons for blogging on here x
I agree, can also relate to the reasons for sharing. Better to share our stories than to keep them hidden. Social media may have a difficult side, but it has brought us a lot of joy, and more importantly, understanding x