Thursday, 6 October 2016

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.


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 :)

Tuesday, 4 October 2016

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.

Thursday, 15 October 2015

You are my sunshine

You may have picked up from my last post that little Bud is becoming much more demanding at home and as a result much harder work for us. It’s not so much the behaviour as the relentless need for attention. This hasn’t stopped our positivity it’s more of a ‘testing time’ to be honest and with that comes tiredness, with tiredness everything seems harder, any worries seem to quadruple and become almost irrational. Feelings like, ‘will she always be this demanding? Can we cope with the constant need for attention?’

My theory on why Rosie is being so demanding is that it's down to her own frustrations – wanting to do more and probably getting annoyed when we don’t fully understand what she’s trying to communicate.

I know I’ve said it before but we really are so lucky to have the support network we have around us and at times like this, when it doesn’t always feel like the future’s going to be rosie it certainly plays a huge part in enabling us to grind out the more difficult days.

All that said Rosie’s as adorable as she’s ever been which just strengthens my feelings that much of this is temporary and not something we should be worrying about too much as yet.

This last couple of weeks I seem to be in favour with Rosie – which I absolutely love! She knows exactly how to play me and how to pull on my heart strings. A great example of this occurred last night when I returned home. She heard my voice as I entered the front door and she was shouting out, “Ello Daddy!” at the top of her voice whilst kicking her legs in excitement. Such a welcome home after a below average day at work was the perfect tonic. She put her hand out and patted the sofa, indicating or rather ‘instructing’ me to sit next to her. As I did, she reached her tiny arm as far as she could around my waist and rested her head on me. Those overwhelming feelings of love surged through my stomach as if strengthening our already tight bond – it’s hard to explain but it really was a lovely father/daughter moment.

We continued cuddling and then she leapt up suddenly and decided she wanted to put her dolls to bed next to us. As she tucked them in using the cushion as a duvet I played along and stroked her baby’s face and began to sing it a song – the same song I sing for Rosie when I tuck her in. “That’s probably more like torture” I hear you say but Rosie seems to love it or at least pretends to anyway! It's a Daddy-to-Rosie adapted version of ‘You are my sunshine’.

“You are my Rosie, my little Rosie,You make Daddy happy when skies are grey... etc”

It’s our little thing we have and she sings along with me as I stroke her tired face… Anyway I’m losing where I am… Oh yes, so I start to sing our song to her baby doll when Rosie suddenly reaches out to me, her eyes welling up and bottom lip quivering and say’s (in a really sad and desperate voice), “No Daddy, no”. I really wasn’t prepared for that reaction and I hadn’t realised just how much it mean’t to her but she was clearly upset that I was singing it to her doll and not her. I felt awful and proud all at the same time! She really is one in a million and I feel so lucky she’s my daughter no matter how tough things can get and will inevitably get in the future.

Just before I sign off I wanted to let those interested know that there is an article due out in Saturday’s Guardian (17th Oct) which we should feature in after being interviewed alongside other parents of children living with DS. I have no idea how it will come across or what will be written but fingers crossed it will be another positive piece that can hopefully change a few more opinions about Down’s syndrome. You can now read the article online by clicking here: The Guardian

Friday, 18 September 2015

Summer Respite

No sooner did Summer come and it's already gone. For those of us living in the North there would be a strong case for questioning whether it ever came at all. Thankfully we were fortunate enough to manage two weeks camping with close friends in the beautiful and sunny Vendee area of France. This holiday marked Rosie's first ever trip abroad which was both exciting and a little nerve wracking as we didn't know what to expect. As it happened there were very mixed reactions towards Rosie and her obvious 'difference' but that's a discussion for another time!

We had a fantastic time in all and met some truly beautiful families camping next to us from Amsterdam and Yorkshire respectively. The children of both families really took to Rosie and enjoyed entertaining her as well as being entertained! Rosie certainly made an impression on others too as she became the 'on-site alarm clock' with her rather loud morning vocal performances (my apologies to those that wanted a lie in).

I was really proud to hear that one of our neighbours had recognised one of the songs to be from the film 'Frozen'. Whilst understanding the words Rosie sings may be tricky at times, you can't mistake how tuneful she is!

Rosie especially loved the swimming pool and (eventually after many attempts) the crashing waves in the sea too.

One thing the holiday taught me was just how demanding Rosie is now becoming. Being in full-time employment (like many parents) means I only get snippets of time with my kids in the mornings and evenings, so having an uninterrupted two weeks together opened my eyes to how much time Karen spends being at Rosie's disposal with almost no time for a break.

There was a brief moment of alarm at the beach one afternoon when Rosie had somehow dissappeared from sight of our group – like some sort of Houdini act. There were six adults and umpteen kids so how she managed it is still a mystery. It was only a matter of seconds realising she wasn't there amusing herself in the sand, before two young French ladies a few meters away were waving for our attention. Sure enough there was Rosie – blissfully unaware of our panic and happily rifling through one of their handbags!

As funny as the beach scare was (in the end) it also made me realise just how desperate both Karen and I were to find rest (even if for a few seconds) from the constant need to entertain Rosie. I know I've said it before but aside from the hospital visits and the open heart surgery, Rosie really has been the easiest of our three children in the early years, so it always came as a surprise to me when I read advice from other parents stressing the importance of respite for parents/carers – something I could never really relate to until now.

We are seeing huge changes in Rosie – much of which is extremely positive, such as her increasing vocabulary and her mobility but with this has come a need for constant attention – and by that I literally mean every second. As well as her ever expanding portfolio of total cuteness there's an increasing array of shrieks, shriels and outright madam moments!

We have come away from our time in France with some amazing memories but I've also recognised the importance of respite for Karen, no matter how small. She deserves a medal to be fair.

In light of this realisation I took it upon myself to help out with bath time this week – something I'm rarely home in time to do. I mean how hard can it be? It's not like I've never bathed her before....except I hadn't done it recently and wow I was in for quite a shock!

Rosie and I trundled off upstairs to get her ready and I sensed she may need the toilet so I asked her if she needed to go, to which she replied, "Poo, yeah, poo Daddy". Ten minutes passed and nothing – I even looked away knowing she's becoming more aware and doesn't like being watched – still nothing. So I figured she just had a bit of wind and all was normal. I then undressed her and placed her in the lovely, warm, clean bathwater. She had been in the bath all of 30 seconds when she shouted out (proud as punch), "Poo Daddy". Sure enough she had...IN...THE...BATH!

Like any experienced parent I quickly disposed of the evidence without too much fuss, then as I washed her she produced another – I was now struggling...BIG TIME. I could almost hear Karen fist punch the sky in pure delight that it was on my shift!

The whole thing from there on became nothing short of total carnage. As I emptied the bath and turned on the shower to wash her down again she tried to escape, slipping in the process and bumping her head, as I grabbed her she slipped from my grasp and then managed to bump herself on the tap! All in all a complete disaster for Dad at bath time and one which again hammered home just how much Karen does juggling our three kids.

Post-bath was much more chilled and eventually Rosie dosed off in my arms – a moment I held onto for longer than I should've given how far past her bedtime it was!

Sunday, 26 July 2015

Remember me?!

Some of you may (or may not) have noticed that it's been a fairly epic break since I last wrote a post on here... I decided to take a little break to spend more quality (less distracted) time with my family. To be honest I had also lost my drive and enthusiasm for it a little, becoming exhausted trying to juggle a full-time job, family and a blog (and all that comes along with that). I figured a break from the blog was the best option – there was also the small matter of my beautiful wife turning 40 so lots of time has been spent preparing and celebrating that big occasion!

It's not to say I've been neglecting everything altogether as I've been involved in a couple of public talks and have also proudly accepted an invitation from the UK's leading Learning Disability Charity, 'Mencap' to become a 'Family Ambassador' for their incredible charity. This also came with the huge honour of being invited back to address a further 200 odd new high achieving Mencap staff at their annual 'Top Talent' day in Birmingham. I had the some-what nerve wracking task of taking to the stage after the London 2012 Paralympic Gold Medalist swimmer and fellow Mencap Ambassador, Jessica-Jane Applegate MBE. It's not everyday that happens and it's a moment I'll forever cherish.

The trouble with a pro-longed break from the blog is that I've found it affecting my confidence to write and be so open again, which is why the break has lasted longer than anticipated. Karen and the kids were away this week and I'd thought what a perfect time to try and write a post...instead I found myself channel hopping through mind-numbing TV and doing anything and everything but writing.

I've finally plucked up the courage so you'll just have to bear with me whilst I find my stride again!

Rosie has come on so much I don't even know where to begin. We've seen her walk unaided more and more, she's already on her third pair of glasses, not to mention the hundreds of little 'Rosie moments', ranging from the adorable to the hilarious! Perhaps I'll just pick up from the now rather than trying to cover everything missed in between.

**Tenuous link to blog title alert** Part of the many celebrations for Bud's Mummy's 40th involved a BBQ party at our house with close family and friends. We don't see our Southern relatives for weeks, sometimes months at a time and on this particular occasion it had been over two months since Rosie had seen her Uncles, Aunts and Cousins. I was so thrilled and a little surprised to hear her name them all when asking if she knew who they were. This shows a real improvement in her memory and confidence and its brilliant to see her progressing so positively in these areas.

Last week whilst Karen was out with friends I took the kids to my favourite local National Trust property 'Lyme Park' where they currently have a 'hunt the Gruffalo' theme in the vast gardens to the house. We had loads of fun on the way round and especially enjoyed the bare foot sensory trail. It was great to see Rosie approach the different surfaces below her feet with caution and then to see how she dealt with each surface – some she loved and some she flat refused to walk on! Rosie especially enjoyed the Rose garden and the video below shows her happily chatting away to the flowers and I'm convinced she introduces them to 'Daddy' at the end when she realises I'm stood there!

Finally, Rosie has now finished her first year at Nursery and continues to thrive in the environment. After a lot of thought and deliberation, as well as meeting with teachers and other professionals involved in Rosie's education, we have decided to defer her school entry in order to give her one more year in the Nursery. We all feel this will be the best solution to help give Rosie the best possible start at School in 2016.

Rosie-Rose-Garden from The Future's Rosie on Vimeo.

Thursday, 18 June 2015

Informed Choice

It has been kindly brought to my attention this morning that an image of myself and Rosie is being used in the USA for a 'pro-life' article fiercely campaigning against abortion.

I'd like to state that if you see any articles or images of myself and Rosie being used to back up an argument either for or against abortion then it is without my consent.

I strive to give people informed choice and nothing else.

I am in no position (or even wish to be) to judge people of their choices – all I hope is that when a diagnosis of Down's syndrome is confirmed pre-natally that parents can make an informed decision. The fact my wife and I chose to continue with the pregnancy in no way means we judge anyone on choices they make. If you come across such articles I'd appreciate a nudge.

The journalist in question has even gone to the trouble of cropping off the watermarks I have in place to let people know they aren't for random use!

Anyway....It's been a while since I posted on here – I will be writing an update on Rosie very soon I promise! In the meantime I'll leave you with a picture of our little Bud in her posh new glasses!

Thank you so much (as always) for all of your support.

Tom x

Wednesday, 11 February 2015

One small step for Rosie...

Wow what a few weeks we've been having with little Budlington! Those that follow on Facebook will be aware that her recent jaunts with her walking aid have reached a whole new level after we walked all the way to the local pub for a Sunday meal!

Rosie and I set off 20 or so minutes earlier to do the five minute walk and she managed the whole way without having to be carried once. Stopping every now and then to take in the sights and the excitement of the main road. I had worried it may have been a bit overwhelming for her especially with the traffic noise but she took to the challenge with erm.... both feet! 

We were a few minutes late for our table time but nothing could stop the feeling of pride I felt in seeing her laughing and smiling and being able to walk herself into the restaurant without having to hold our hands or be pushed in her pushchair – okay so she still had the walker to give her the support and stability but make no mistake, Rosie was doing this with her own efforts and enjoying every moment including the attention and encouragement of passing strangers along the way.

This was a couple of weeks ago now and since then we've been determined to keep her at it with encouragement not expectation. One thing we have learned about Rosie is Rosie does things her way and in her own time so any encouragement that appears too pushy and expectant has the complete adverse effect. 

Her speech and understanding have been coming along wonders again thanks to the efforts of Mummy and the time she is spending at mainstream Nursery amongst her peers, but ultimately with her one-to-one Lorraine. I hear so often people say how blessed we are with Rosie and yes I do feel that but I think our true blessing has come with Lorraine who is just the most perfect one-to-one for Rosie and who Rosie seems to bounce off perfectly – learning through fun and their wonderful connection. The progress Rosie has made since attending Nursery has been nothing short of amazing. I refer back to the walking frame and how we struggled for months to get her anywhere near it let alone using it, when suddenly seemingly from nowhere she's up using it and racing around the playground.

Today we had the news we've been awaiting for since, well, forever!

There I am sat in a meeting at work when I glance at my phone to see a missed call and a text message from Karen, saying: 

"Apparently Rosie has walked a few steps on her own at nursery with the Physio. I'm crying."

Well I tried, honestly I did...but I couldn't get a grip and the tears went and I had to just blurt out what I had just read! I was so overwhelmed by the news as it's another of my 'What if's' that is coming ever closer to being struck off! Needless to say by the time I got home to witness the few steps first-hand she'd had enough and just wanted a cuddle. I hope to be able to post a video soon of this but I'll wait until I witness it for myself!