Welcome to wonderful

Yesterday saw the official launch of the Mencap 'FamilyHub' – A new online community for parents and carers of children (young and old and yet to be born!) with a learning disability. This will be a great resource for people to exchange ideas, share experiences and offer support to those in need. It's not always convenient to visit a local group for support and many people are afraid to ask questions face-to-face for fear of sounding silly or selfish or even being judged. An online forum is the perfect place to ask such questions at a time and place that suits you.

As a Family Ambassador for Mencap I am very proud to be a part of this community and as such was asked to write the first post for the forum. I actually found parts of it difficult and distressing to write as I had to take myself back to a time when my ignorance of Down's syndrome knew no bounds but I want other parents who may be struggling to come to terms with a diagnosis to understand that they are not alone and however bad they feel the journey will get easier.

I have included the post below however I urge you (if you are a parent or carer of someone with a learning disability) to read it in the forum and sign up by clicking here – you never know you might just have that burning question answered or be able to help someone else.

Welcome to wonderful – my story as Rosie's dad

I’m proud to be a family ambassador for Mencap and as such was asked if I would write a post aimed at other parents who may be in a similar situation to the one I found myself in when my daughter was diagnosed with Down’s syndrome. Hopefully the following post can offer some positivity or at least reassurance that no matter how afraid or confused a new parent find themselves, they are not alone.

I would assume there are many different reasons that you may find yourself here reading this post, a fear of the unknown, a need for reassurance perhaps? Whatever your reasons I can almost guarantee you are not unique or alone with your current situation.

I’m a Dad of three – my two sons, Harry and Joe, and their younger sister Rosie who happens to have a learning disability – a SEVERE learning disability if you go by the often negative words used to describe Down’s syndrome (DS).

Rosie is 5 ½ years old and has not only opened up my eyes to a wonderful new place (I was once afraid of) but also everyone else’s around her, to see beyond the myths associated with DS that I once believed to be reality.

My wife Karen and I knew pre-natally that our daughter would have DS and so my story began before I’d even set eyes upon my baby girl.

I remember the emotions well, deep shock and anxiety and a complete fear of the unknown. Some of my feelings which I have kept locked-up (until-now) were not only irrational but completely selfish, even disturbing to me at times. Perhaps they say more about the person I was then or perhaps (more likely) they are a perfectly normal part of the rationalising process the mind takes when trying to digest such life-changing news. Whatever the reasons, they were real and I’m sharing them here now to maybe reach that person who is equally disturbed by their own similar feelings.

It isn’t easy for me to write these things down let alone share them publicly because really the ‘pre-Rosie’ me is referring to Rosie, her friends and anyone else I’ve ever met or now have the pleasure of knowing who has DS. I feel ashamed I ever had such ignorance, but I am learning not to beat myself up about it as it’s a life-lesson that has enlightened me in such a positive way.

My ignorance of DS knew no limits back then and I remember thinking thoughts like, I hope she doesn’t look really ‘Downs’. I searched hundreds of pictures trying to find reassurance that ‘they’ don’t all look the same and that ‘they’ can look beautiful too. I couldn’t have been more selfish in my thoughts and this continued certainly for the first few weeks post-diagnosis.

Finding out pre-natally gave my wife and I the time to get used to the idea that our daughter has special needs. As a result I can’t talk from any experience of a postnatal diagnosis but I would imagine the shock is similar – it’s just you may be taking time to adjust and learn in the first few weeks after the birth rather than before.

At some point the time will come where you see past the diagnosis and see the person – the beautiful, unique child that looks more like you as parents than someone else with DS.

For me the shift in change began a few hours after Rosie was born, she wasn’t just the ‘Downs baby’ my wife was carrying but my daughter who happened to have a little extra (chromosome in this case!).

Many of those selfish fears and concerns turned to feelings of protection for Rosie. I won’t lie, things hadn’t changed so dramatically that I was in full ‘moving on’ mode but it was a solid step forward towards seeing beyond the syndrome.

However, even after all these feelings of overwhelming love for my new baby I had pangs of guilt as I realised they still couldn’t totally overrule the fears. It was at this point that I knew this process of acceptance was going to take me some time.

I decided I would clear my head and re-jig my thoughts by allowing myself to enjoy the wonderful life that lay there right in front of me, a life that needed and wanted me – take it hour-by-hour I thought, at least for the time being because consuming myself with anxiety really wasn’t the answer. I convinced myself I was on the right track at least by taking steps – yes they were tiny but at least they were forward ones and so stopped beating myself up that I was some kind of terrible Dad.

Things really changed significantly for me six months after Rosie’s birth. In September 2011 Rosie had to endure over seven hours of open heart surgery which as you can imagine was a very traumatic time for the whole family. It wasn’t a bolt out of the blue, it was something we knew would be on the cards shortly after her birth but nothing really prepares you for the moment.

As I sat by her bedside in the intensive care unit at Alder Hey Children’s Hospital I held her tiny hand and gazed at her in total awe of the strength and bravery she had shown – it then dawned on me that for the whole time in hospital I hadn’t thought once about the fact she has Down’s syndrome, it had, at this point become totally insignificant for the first time since we’d had the diagnosis. All I wanted was to get my baby girl home safely.

Even now though, over six years on from the diagnosis I still have fears for Rosie’s future, I worry about my two son’s too though if I’m honest – but that’s just being a parent I guess?!

When time permits I write on my blog 'The Future's Rosie' which covers all aspects of her life and I recall one particular post which covered a list of ‘What ifs…?’ some of which may sound familiar:

• What if I don't ever get used to the inevitable stares from the ignorant corners of society?
• What if Rosie can't ever walk?
• What if Rosie attends school and she's the only person in her class not to get a party invite?
• What if she's bullied and picked on by her peers and she thinks they are her friends?
• What if name calling leaves a lasting mental scar on her and/or her brothers?
• What if she becomes too dependent when she's older?
• What if I become so protective it affects her ability to become independent?
• What if I can't do enough to help her reach her full potential?
• What if I can't afford the extra classes or development tools she could really use to her benefit?
• What if...and the list goes on.

Thankfully the majority haven’t materialised and those that have (the odd stare now and then) have been so minor they’re as good as insignificant.

Rosie has been a breath of fresh air to our family and the highs (so far) have most definitely outweighed any lows.

She’s in a mainstream school now, has lots of friends both with and without DS and has so many people around her who love and care for her and want to see her reach her full potential as much as we do.

Her brothers both dote on her as they would any younger sister and have shown nothing but pure affection and pride in her – I have yet to see them struggling or finding life too restricting – as is often the worry for siblings of a child with a disability.

Whilst there are still society stigmas associated with learning disabilities, charities like Mencap have really made a difference and are pathing the way for more and more people to reach their ambitions and receive the support they need to achieve these goals. We all deserve the best chance at life no matter what our situation and my daughter who happens to have DS is no different in my opinion. She deserves to be given the chances she needs and she will.

So, if you are a parent struggling with a diagnosis I’d say remember that for many, the process of making sense and coming to terms with things can be a marathon not a sprint. No matter how frightened, confused or worried you are you can guarantee you’re not alone and these feelings are totally natural. I’m almost sure every one of us has been through them, and yes, whilst we’re all different and will manage the ‘coming to terms with’ process differently, it’s important to know it is a process and it will get easier.

If it takes you longer than others it doesn’t make you weaker or any less a person it simply makes you human.

Dear Rosie, Thank you.

In the weeks since the BBC documentary A World Without Down's Syndrome? there has been a great deal of discussion around the subject. As with any good debate there have been many opinions shared, however there was one comment I read after an article in one of the leading online news sites that particularly upset me. It upset me because it was uneducated nonsense that someone at a vulnerable time may well read and believe. They were making fleeting statements as if representing 100% of families living with Down's syndrome in their lives.  Implying that all siblings of children with DS suffer and are burdened by it somehow.

I'd like to share with you here a letter that my 13 year old son Harry wrote a couple of weeks ago. The school he attends had asked them to write a 'thank you' letter to someone, literally anyone, it could even be someone they don't know personally like a sports star / musician etc. Harry chose to write his letter to Rosie – A letter which I think goes a fair way to explaining how he feels about his sister and her 'disability', a viewpoint that is real, un-prompted and the voice of real-life experience and not one of an outsiders 'assumption'.


Dear Rosie,

I would like to say thank you to you because you have taught me how to be a more understanding, well-rounded person. When you were born, despite how proud I was, I hate to admit that I was nervous, mainly because I did not understand the learning disability you have – Down's syndrome. You have taught me that having a learning disability is nothing to worry about and I also now see everybody as loving human beings no matter what learning disability or physical disability they may or may not have. I would also like to thank you for understanding me. Although you may not be able to communicate through fluent English with me, I really appreciate you smiling with me when I'm happy and comforting me when I'm sad. As well as that, pictures, videos and the presence of you make a lot of people happy. So, thank you from myself and a lot of other people.

Harry 


Yes it's true and natural that as parents we will worry about our children and whether or not they will feel burdened by having a brother or sister with a disability, however nobody can tell you their reality like a sibling themselves. I'm under no illusion that this letter represents every child who has a brother or sister with a disability but it certainly illustrates that they don't all suffer and don't all feel a negative impact.

I'm extremely proud of Harry for writing such a lovely note and for the fact it comes straight from the heart with no agenda other than to thank his sister for being who she is.

No hidden agenda's

Well that was quite something...

I  hope those of you that tuned into watch "A World Without Down's syndrome?" enjoyed it as much as I did. 

A quote that struck a real chord with me came when the Icelandic geneticist spoke of the manger of their building (whose son has Down's syndrome):

 "There is hardly anything more beautiful than seeing the two of them together, because there is such a strong bond and so much love"

As I mentioned in my blog post, Sally has shown great courage to make this documentary. Why? well because aside from all the amazing responses she's now exposed herself to debate with which comes an onslaught of 'doubters' who thought last nights programme had a hidden agenda – to guilt trip any new parents into keeping their unborn child with Down's syndrome.

The only 'agendas' I saw were:

A) to spark a much overdue and vital society debate as to the ethics of the new non-invasive screening for Down's syndrome (DS), because let's face it, if it starts with DS where does it end up heading? We are all, every single last one of us imperfect in so many ways after all.

and

B) to show the side that has almost no voice at the point of diagnosis. The real life stories of families living with DS. The side that might help take the fear away at a time when you are led to believe your world is caving in. It's this kind of more balanced information that will help a couple to make a more INFORMED choice. The scales just aren't fairly tipped at the moment.

As a parent and advocate for DS (with a pretty small voice) I am so happy this documentary was made and aired. The tireless hard work so many people have been doing over the years has now been given a fair hearing and reached more people than we could ever have dreamed of and been delivered in such a brilliant, compelling, sometimes funny and above all, non-patronising way with zero hidden agendas.

A big thank you to Sally for taking the gutsy plunge, for Hayley (Down's Side Up) for being brave enough to share her emotional story so publicly, to all the people involved from both sides for having the courage to share your thoughts on a sensitive subject and for the BBC for airing such a groundbreaking documentary.

Now the debate has started the hard work really begins :)

A World Without Down's Syndrome?

Some of you may have noticed (many of you won't care!) but it's almost a year since I posted on here. Not something I'm proud of nor ashamed of but it has made it harder each time I approach the keyboard to know where to start with all of Rosie's achievements (and mischiefs) in the past 12 months.

So I’ve chosen the eve of a potentially groundbreaking short film to ease back in and write a quick post to help spread the word…

Tomorrow (Wednesday 5th October 2016) BBC2 will be airing the eagerly awaited documentary from Sally Phillips, 'A World Without Down's Syndrome?'

"Driven by the experience of raising her son Olly, who has Down's syndrome, Sally explores some of the ethical implications of our national screening policy."

This could be an important documentary for something that is so so important to me when new parents are faced with a pre-natal diagnosis of Down’s syndrome. That something is, ‘choice’ and not just choice but INFORMED choice. This was one of the primary reason’s I started The Future’s Rosie and it continues to be the driving force behind why I (albeit sporadically now) blog and share personal moments of Rosie’s life on social media. This in itself isn’t easy as I question myself daily about whether it’s the right thing to do – do people really see why I do this or do they carry the opinion I’m exposing what would otherwise be personal family moments as a selfish need for attention?

I can answer those that think the latter by saying in all honesty life would be much simpler and less hassle for me if I didn’t do it at all, I’d much rather live in a world where Rosie’s condition wasn’t something I felt I needed to share to show ‘it’s okay’.

Too many people are afraid of the ‘unknown’ with Down’s syndrome – yes I was that person too once which is why I know it’s a very real problem. I’m not and never intend to be a part of any ‘PC brigade’ most DS advocates don’t either. For me it’s always been about educating in a non-patronising way and if that means sharing my daughters life to help the cause, then for now at least I’m still positive it’s the right thing to do – even if it is a mere drop in the ocean of change.

I, along with so many other parents am very grateful that Sally, who is already in the public eye for professional reasons has used her platform to reach people on a much grander scale than someone like myself could ever dream of. This isn't a small gesture either I would imagine it's taken an awful lot of hard work, careful contemplation and courage. Sally is now exposing herself to inevitable debate and criticism which can’t be easy – all for the greater good of educating society to the 'other' side of 'Down's syndrome, a side that many healthcare professionals would have you believe doesn't exist – and as you may or may not know I say that from first-hand experience.

If you get the chance please do tune in to watch or set your record buttons! The more people that see this short film the better so please share and spread the word too! A world without Down's syndrome would be a world without my baby, my beautiful girl, 'Daddy's little Princess' and to that I say a resounding no thank you.

http://www.bbc.co.uk/programmes/b07ycbj5