Thursday, 18 December 2014

I'm (kind of) standing – yeah! yeah! yeah!

This is likely to be the last post of this year before it's tools down and chilling out for Christmas. Two fairly major events have happened since I last wrote and seeing as they are both really positive it seems like a fitting way to end what has been a fantastic year for Rosie.

The first event has been touched on before by other parents of children with Down's syndrome who are further on in their journey but I guess you don't really know how it feels until it happens to your own child...

Rosie started mainstream nursery in September and as I've expressed in previous posts one of my biggest concerns has always been whether she will be included and accepted. One of the most amazing things I find when I see Rosie amongst her peers at nursery is just how accepting all the kids are. I dare say they may even be beginning to realise she is a little different as she has a one-to-one for starters and is unable to run off and play with them on her own. Any physical differences in Rosie's appearance don't seem to have any impact on the other children where they may be unsure or even frightened. There seems to be a natural instinct amongst a few in the class to gravitate towards her, perhaps even mother her slightly. It just goes to show that prejudice really is something taught to children through society and we could learn a lot by watching the unpolluted innocence of children interacting.

I seem to have gone off on a tangent somehow trying to paint a background picture – although it does tie in! 

In May last year I wrote a post called 'What if?' which touched on a long list of worries I had for Rosie. At the time of writing that post I was in a bit of an anxious and 'wobbly' place. One of the things on that list was, 'What if Rosie attends School and is the only person in her class not to get a party invite?'... 

Well I'm so proud to say that thanks to her lovely friend Demi at nursery, I can firmly cross that off my list! I was outside the school gate when I heard this little voice, I looked down and was handed this:

Now it may not seem like a big deal but to me it meant the absolute world. I couldn't stop smiling – this was my daughter, who I feared may be excluded in the early days of diagnosis, being well and truly INCLUDED.

It's difficult to explain the elation upon receiving it on Rosie's behalf and I dare say it was a fairly insignificant moment to Demi herself as she was merely asking her friend to a party – standard stuff for a three year old, however to me it was a very significant moment indeed, one of immense pride and also relief that Rosie is being embraced by her classroom peers. In fact since receiving this invite Rosie has had another one too which falls on the day after so she has a weekend of partying to look forward to!

The second event happened last week when we were at a friends house and all the kids were having a bit of a boogie (okay maybe the adults too). Rosie was busy bum shuffling about waving her hands and arms in perfect time to the beat which only magnified my own lack of rhythm! A short while later one of the kids noticed Rosie sneaking off into a larger space and shouted, "Look at Rosie!" We all glanced over and there she was, stood up on her own two feet. She must have been there for a good 10–15 seconds and she'd got to her feet unaided too. We all cheered and clapped which of course she loved! It was a lovely moment to witness and one which we can now build on.

As people often remind me when I get anxious about her lack of walking – Rosie will get there it will just be in her own time and on her terms!

I'd like to take this opportunity to thank you all for your support, words of wisdom and for helping spread the word that Down's syndrome really is nothing to fear.

It's been a fantastic year with so much achieved, from facing my own fears of public speaking by delivering a talk to over 200 of Mencap's top staff, a double award at this years MADS and the honour of being invited to join Mencap in the Lord Mayors Parade which even included a live interview on BBC One! These have all been amazing opportunities to get a positive message across about the reality of raising a child with Down's syndrome.

Rosie is exhausted from such a great year and is looking forward to a long rest! Wishing you all a very merry Christmas and a wonderful New Year!


Sunday, 30 November 2014

Daddy's Girl

I'm not sure why or for what reason but at this particular moment in Rosie's life she is very much all about 'Daddy'. This is not to say no-one else gets a look in but we just seem to be bonding more than ever at the moment.

As soon as she wakes in the morning I hear shouts of, "Daddy!" Also whenever she hears my voice if she's not seen me for a while it's excited cries of, "Daddy, Daddy, Daddy" – She then comes shuffling over sticks her arms up, gives me her best doe eyed look and demands to be picked up for a cuddle.

A few days back I called home in my lunch break to speak to Rosie and we had the closest I've come to an actual conversation with her. Okay so I asked all the questions and the majority of responses were, "Yes" and "Daddy" but I really felt like we were communicating better than ever before. As our in-depth conversation was coming to an end I heard Karen in the background shouting out, "Rosie's kissing the phone!" My heart almost melted on the spot. I'm going to have my work cut out if I'm to remain firm and fair as a Dad because right now she has me completely under her spell!

As is plainly obvious little Budlington is already a Daddy's girl and I know my relationship with her is not unique to other Dads and their daughters, but there is something really quite amazing when you know the already strong bond is getting stronger right in front of you.

This is likely reading as a poor post as I have no idea how (or the words) to describe the bond and that feeling of the connection getting stronger. I had to try however as right now I want to shout it from the rooftops. I'm so very proud to call Rosie my daughter.






Thursday, 20 November 2014

Power to the Parents!

Last month I was kindly invited by Viv Bennett, Director of Nursing at DoH to partake in their current ‘Week of Action’ by writing this post outlining the power and importance of parent blogging and what motivated me to start ‘The Future’s Rosie’. Today’s (Thursday) theme is based around supporting families and children, encouraging them to have a voice. I guess this is where myself as a parent blogger fits in.

When I first started blogging I really had no idea of the size of audience it may reach. I was nervous about spilling my heart out at first but I always set out with the intention that if it can help just one person feel more positive and/or less alone then it will be worthwhile. The motivation for me was born out of our early experiences at diagnosis and also my anxieties and ignorance about Down's syndrome. I didn't want parents facing the same fears and thinking it was going to be doom and gloom ahead – and so 'The Future's Rosie' was born.

After our BARTS blood test came back with a one in 12 'high risk' of Trisomy 21 we received very little in the way of support from our original consultant and midwife team. They assumed we would terminate the pregnancy if the amniothentesis we decided to have came back confirming Down’s syndrome (DS). Something that really gets my goat is how results are often referred to as high or low ‘RISK’. By using the word ‘risk’ it automatically brings in an element of fear with it’s negativity. A simple change of wording to high or low ‘CHANCE’ could have a profound effect on how someone hears and digests the initial news.

The biggest and hardest decision my wife and I faced wasn't whether we would terminate the pregnancy if the amnio confirmed DS but whether we should have the amnio at all. We had been informed that it carries a 'risk' (correct use here) of miscarriage. Many people may think "well if you were so sure you wanted to carry on regardless then why would you potentially risk the pregnancy?" I can understand that viewpoint but we are all individuals and it was important to us at the time (especially in light of our ignorance about DS) that we knew for sure in order to allow ourselves time to prepare. 

Once the amnio confirmed Down's syndrome I remember sifting through the outdated and somewhat clinical information available online and craving to know what it was actually going to be like living the day to day raising a child with a learning disability. I desperately searched for an open and honest opinion from a parent’s perspective. I wanted to know whether my baby would have a decent quality of life and what they might achieve, rather than a list of things they won’t be able to do.

Shortly after the diagnosis my wife and I contacted our local support group where we were soon offered contact with parents willing to offer words of support. This is an invaluable thing for many but equally not something everyone is comfortable with. Personally I didn’t feel ready to meet complete strangers, yet I was desperate to know what they had to say and this is exactly where blogging comes into it’s own – it offers people the chance to read a parents perspective at anytime, whenever they are ready and in an environment they are comfortable with.

I think established and trusted parent blogs could be used by healthcare professionals (HCP’s) in conjunction with current information resources to show, not only the HCP’s themselves, but also new parents what it’s like living the day-to-day. This would help parents deal with the news of a diagnosis and help them see past the initial fear and look towards a brighter future. In the cases of a pre-natal diagnosis having this information from a parents perspective could also help couples make a more informed choice about whether or not they feel prepared to continue with the pregnancy. 

There are more parents speaking out now about how a diagnosis is delivered and as a result I’m hearing of increasing numbers of stories where maternity departments are welcoming the idea of discussing ways to improve on this.

After our fairly negative early experience it’s important to mention that since then our other encounters with HCPs have been extremely positive.

Having a child with DS and connected health issues has meant that more interventions from an early age were required than with our two sons. Rosie currently has home and nursery visits from a Physiotherapist, Speech & Language Therapist (SALT) and an Occupational Therapist. All of the aforementioned have helped Rosie immensely and this kind of service has been invaluable to her development – without which we would be feeling somewhat lost.

Here are a few UK based parent blogs connected to Down’s syndrome that I would strongly recommend:







Wednesday, 5 November 2014

Sorry seems to be the hardest word...

So after a few days without my family I sit here babysitting my Godson Marley and his sister whilst his Mum and Dad go out for a well earned meal – it feels a bit like a busman’s holiday to be honest! They are nicely tucked up in bed and so I thought what better time to try and pen down this much overdue update on our little Budlington. Every now and then things get a bit ‘on top’ and recently has been no exception. Being in full-time employment with a family of three young kids at home and fitting all The Future’s Rosie stuff in to boot does take its toll sometimes so I decided to cut myself some slack and lay low for a little while.

Anyway enough about me!

Rosie has remained busy despite her Daddy being lazy! She’s really enjoying Nursery now and as the new term looms we’ll be upping her mornings from three to four a week. It hasn’t taken her long at all to get to the stage where Karen and I can drop her off and leave almost immediately. There are no tears and very little apprehension (if any at all) and she is quite happy to give us a kiss, wave and say “bye-bye!”

For all that positive however, something that is becoming more and more evident is Rosie seems to have a rather big stubborn streak – I’ll refrain from saying where I think she gets it from though or my life won’t be worth living!

The first signs came a couple of months back. We have been consistently trying to emphasise the word and sign for 'sorry' when she’s been naughty or hurt one of us with her hyper-speed face grabbing move (which is still yet to pass unfortunately). At first we thought she may not really understand but as time moves on and her speech is developing through Nursery etc we realise she is just plain refusing. Just last week Rosie had a swipe at Karen and scratched her neck. Karen instantly and assertively signed and said, “No!” then asked Rosie to say sorry again using Makaton and speech but Rosie just sat there all doe eyed and in silence. So, Karen decided to change tact and ask her to repeat some familiar words to see if she really does understand. Here is an outline of that conversation – I’m sure you’ll concur after reading, that our little sweet 'butter wouldn’t melt' Budlington is indeed just a stubborn wee thing!

Mummy: Rosie say Teddy
Rosie: Teddy!

Mummy: Rosie say Ball
Rosie: Ball!

Mummy: Rosie say Mummy
Rosie: Mummy!

Mummy: Rosie say eyes
Rosie: Eyes!

Mummy: Rosie say sorry
Rosie: Eyes!

As I'm sure you can appreciate, keeping a straight and stern face at times like these is extremely difficult!

Anyway.... In other more entertaining news our little Bud has been enjoying the latest series of 'Celebrity Come Strictly Ice Dancing' or whatever it’s called on BBC 1! Below is a video of her dancing the routines with her dolly. I was particularly taken with how she seems to observe the moves on the telly then re-create them with her doll, including a well earned round of applause at the end.


Celebrity Dolly Dancing from The Future's Rosie on Vimeo.


Monday, 22 September 2014

A Double MAD Night

*WARNING* This post contains countless clichés!

So apologies in advance for a post likely to be packed full of obvious statements but I just can't find the words to express my total shock at coming away from Friday night's 2014 MAD Blog Awards as the winner of not only the 'Best Writer' category but also 'Blog of the Year' too.

Before I bore you with the details I would like to give my heartfelt thanks to each and everyone of you that nominated and voted for The Future's Rosie – without your continued support the blog would simply be floating around looking a bit lost in cyberspace and I'd have probably given up as soon as I'd started back in 2012.

The finalists in all categories made up an extremely impressive list of talent from all aspects of the parent blogging spectrum. A mere 75 finalists were in attendance after over 250,000 nominations and votes!

The night started with a champagne reception which certainly helped settle any nerves. Feeling rather outnumbered by women I was relieved to see a fellow Dad blogger and had a great chat with Ricky AKA Skint Dad – A very inspirational story for anyone finding themselves struggling financially. I also enjoyed catching up with a few familiar faces from last years event before it was time to sit down and be wined and dined.

A big highlight for me came when the winner of 'Best New Blog' was announced as 'Don't be Sorry'. For those few of you that haven't heard of it yet, Don't be Sorry is a beautiful and honest blog written by Sarah Roberts about her son Oscar, who like Rosie, happens to have Down's syndrome. I felt a little sting in my eye as it was announce because I knew Sarah hadn't expected to win at all having just spoken to her, but I was also so proud to see another blog about Down's syndrome acknowledged and rewarded in the parent blogging community. Also representing us 'DS Bloggers' as an Outstanding Contributor was the remarkable Hayley from Downs Side Up – little by little we are becoming a voice that will hopefully play it's part in making a difference for the future of our little ones.

In truth I hadn't expected anything myself from the evening especially in light of the exceptional finalists I found myself amongst in my two categories. I thought I'd had my moment at last years event with 'Best New Blog' – even then I was convinced it was just a fluke. So when The Future's Rosie was announced as winner of The Watch Hut sponsored 'Best Writer' category I was genuinely shocked. Like the previous year I cannot remember what I said – being thrown into the limelight is my biggest nightmare, I am however, pretty confident it made very little sense! As the evening fell on the third anniversary of Rosie's heart surgery I felt it only right to dedicate the award to all those healthcare professionals who helped fix her tiny heart.

I was extremely touched by the kind words from the host of the evening 'Dr Ranj (of cBeebies and This Morning fame). As a major added bonus, The Watch Hut very generously gave me £500 towards a new watch too!

As I sat down again my heart was still racing and I texted my wife Karen, who was upstairs enjoying the comforts of the swanky Royal Garden Hotel. Then seemingly out of nowhere they announced TFR again – this time as the 2014 'Blog of the Year' sponsored by Parentdish. I'm racking my tiny and tired brain for better words to describe the shock but I'm going to have to settle for stunned and numb!

Needless to say I had a great night celebrating into the early hours. I was most impressed that Karen, Hayley and I found ourselves to be the last ones standing!

Thank you to Sally and all of the MADS team for a brilliant night and for making all the finalists feel so amazing.

I'd like to say a special thank you to my family and friends for being such a huge support, especially Karen and my three amazing kids. Obviously the biggest thanks goes to my little bundle of joy 'Budlington' who continues to teach and inspire me every single day.


Hayley from 'Downs Side Up' (left) and Sarah from 'Don't be Sorry'

Mrs Future's Rosie with Dr Ranj



Wednesday, 10 September 2014

Budlington Begins Nursery

So, last Wednesday the day finally arrived for Rosie to begin nursery school. It's a day that, three years ago, we could only dream about as we were two weeks away from signing the medical forms that gave consent to the surgeons at Alder Hey to perform open heart surgery on Rosie. This mean't her heart would be stopped for approximately 45 mins during the 7 1/2 hour operation and she would be kept alive by machinery. I spend a lot of time thinking about that chapter in her life and it's always my first thought each time she achieves a big life moment. It was always so difficult to see beyond it at the time – it felt as if daring to do so would be tempting fate somehow. Anyway I digress...

So here we are almost three years on and Rosie is starting nursery at the same mainstream school her older brothers attend/attended.

I wanted to shout out to everyone, "LOOK! My baby's starting nursery today!"

The first drop off was really exciting. As we walked to the school, I was beaming with pride. I wanted to shout out to everyone, "LOOK! My baby's starting nursery today!" I just couldn't stop smiling. When we reached the gate, Rosie's one-to-one Lorraine was there to greet us. I could see the excitement in her face also and it made me feel all the more reassured that everything would be okay.

We've known Lorraine since the boys started at the school. She became a great support to us in the early days of finding out that we were having a baby with Down's syndrome (DS) as she herself had a beautiful son, Christopher, who also had DS. When it was announced to us that Lorraine would be Rosie's one-to-one Karen and I were both over the moon as we knew our Bud would be in the best possible hands.

As we arrived, the excitement in her teacher, Mrs Carr, was also plain to see and I became a bit overwhelmed by the work and effort that had clearly gone in by everyone to make the transition as smooth as possible. Flash cards were made of the different areas in the classroom as well as adjustments to play equipment to accommodate Rosie's petite size – many other ideas were also discussed for the coming days.

We all walked into the classroom but I stood back in the entrance area not wanting to over crowd Rosie. As I stood and watched Rosie sit down with Lorraine and Karen, I couldn't help but well-up with a whole heap of emotions being responsible. I was so proud of Rosie, so happy she was excited and so very grateful to the school for making her so welcome.

I left them all to it and Karen stayed with her for an hour to aid the transition. Rosie clearly had a lot of fun on her first day and was full of smiles when Karen returned to pick her up.

The next day we both stayed with her for about 10 minutes or so and when the time came to leave, Rosie just turned and said, "Bye bye" then carried on with her jigsaw. It really couldn't have gone any better and we both felt thrilled and proud as punch!

A short while later....


Karen was just about to sit down and enjoy her first real peaceful cup of tea in years when the phone rang. Yes, it was the nursery! Lorraine rang to say that Rosie had been crying out, "Mummy!" and getting a bit distressed – to be fair it was all going a little bit too perfectly!

It was agreed that picking her up early would be the best option before she started to associate Nursery with something stressful. We've also decided that staggering the settling in period over alternate mornings will allow Rosie time to adjust and get used to spending a few hours a day away from her Mummy.

So that is where we are up to right now. She clearly loves being there, which is great, but it's going to take a bit of time getting her fully accustomed to the change. The promising thing is that although she may struggle being away from Karen after an hour or so, she remains happy to go in each morning.









Tuesday, 2 September 2014

Flowering Bud

I apologise for beginning this post with an age old cliché but seriously, where does time actually go? Another couple of weeks (and more) have passed since I last wrote and suddenly I find everything happening at once. No sooner did the school holidays start and they've finished again!

Bud's eldest brother Harry started High School today which in itself has been a huge thing for our family but this blog is about Rosie so I'll not digress other than to say, Harry, I'm extremely proud of you son, you're growing to be a genuinely decent young man and the whole family are very proud of you for taking such a big step (which includes travelling by train!) so confidently.

So back to Rosie... well as I mentioned at the end of the last update she was to be a flower girl at our friends Nicola & Brian's wedding which she took to really well. Not only did she look absolutely gorgeous and cute beyond words but she behaved impeccably too. The day was wonderful and we were even treated at one stage to a bit of disco hand dancing from Rosie (see video below) – let me tell you this girl has rhythm, certainly more than I do anyway!

We met Nicola & Brian through our local support group, their son Daniel (who also has DS) is just a week younger than Rosie and has been through many of the same early challenges in life, including open heart surgery and the date of the wedding deliberately fell on the anniversary of his operation. We have met so many wonderful people through our group and it was an honour to be there to share such a special day together. As the night drew to a close there was still a bunch of us dancing into the early hours and it just so happened that the last ones standing were all members of our South Manchester Support group. It was quite a special moment and Nicola picked up on it immediately making a touching off the cuff speech acknowledging our friendships which have blossomed so quickly amongst us all.

The photo of us below (sadly not including everyone) dispels two important myths about Down's syndrome. Firstly not all babies with DS are born to older couples and secondly having a baby with special needs will not alienate you from friends and society or stop you having good times, if anything it will enrich your life and friendships further.

I can't believe it but the next post I write will be based around Rosie's first few days at Nursery which she starts tomorrow. Yes you read it right, tomorrow! Neither Karen and I can believe how far she has come and just how quickly this next big stage in her life has arrived. Rosie has began to slow down with her progress in recent weeks and we both feel that although 'letting her go' will be a huge upheaval emotionally (especially for Karen) it is definitely what she needs now in order to push on and encourage further development.


Happy from The Future's Rosie on Vimeo.