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!

Sunday, 11 January 2015

Strolling into a new year...

This is a very quick post to share the amazing achievement of Rosie over the festive holidays. It's been a wonderful break for Rosie and family – so much has happened and I have no idea where to begin. The time we had together was great including a week away in Brecon, Wales where we spent Christmas with Karen's family – 17 adults and kids in one great big house! I've chosen to take the easy option and keep the goings on over the holidays to ourselves. However one bit of news I HAD to share is that Rosie is now up on her feet and walking about with the aid of 'C3PO' her awful looking but brilliant walking frame.

We've really struggled to get Rosie to use this and eventually we decided she just wasn't going to go for that option. The physio suggested taking 'C3PO' to the nursery where there is more space and seeing if the encouragement of her one-to-one Lorraine and staff might make her think again about using it. Well sure enough a couple of days before she finished for the holidays Rosie used the frame and managed to walk about in the outside play area! I had seen a short video and couldn't believe my eyes but the moment didn't really hit home with me until I saw her use it in front of me.

We decided to take 'C3PO' with us to Brecon as the house had big corridors with wooden floors allowing plenty of space to explore. I've included a short video below where you can see Rosie walking with the frame. I was seriously beginning to doubt whether she would get to her feet and co-ordinate the feet and hands to balance, then suddenly out of nowhere she's up and off!

It's a fantastic start to the New Year and who knows we could have her walking by next Christmas! I certainly won't have so many doubts about her achieving that goal now.

Strolling from The Future's Rosie on Vimeo.

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 clich├ęs!

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