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.

Thursday, 14 August 2014

Glastonbuddy 2014

Well we're now back from our Summer holidays and I thought it was about time I wrote a post, so here goes...

A week and half ago we packed up our car filling every single available space with camping equipment and headed off to Glastonbury – sadly a month or so too late for the festival!

We broke the long journey and stopped over at our dear friends, Ric and Claire's near Bromsgrove. Ever the perfect hosts and it was great to see their lovely son Ruben and Rosie playing so well together. Rosie certainly isn't shy when it comes to meeting children she doesn't see a lot of or indeed children she's never seen before, this will be a valuable tool for her to take through life and I hope she continues with this confidence.

So onto camping... remembering that Rosie is only three and we are still relatively new to having a child with DS I guess it's normal (or at least I hope it's normal) to wonder and perhaps worry a little about how you will be greeted to places. Greenacres Campsite near Glastonbury was our destination and we couldn't have been made to feel more welcome, we were treated with complete normality which is so important given that this was to be our home for the next week.

Duncan & Mary who run the fabulous family friendly campsite had a genuine interest in our whole family and that normality is totally priceless to us. Alice (9) their daughter (shown in the picture below) expressed a huge interest in Rosie and over the the week became our Bud's new best Buddy. Alice asked so many intelligent questions – so keen she was to educate herself and find out as much as possible about Rosie and what it's like having a child with Down's syndrome. She regularly took Rosie off to the play area encouraging her to get up on her feet. Alice is such a delightful young girl and we can't thank her enough for the moments of respite she gave Karen and I as she looked after our Bud. We will most certainly be back to camp at Greenacres in the near future and wouldn't hesitate in recommending it to any family.

Rosie was no trouble going to bed and took to camping really well, we had done a few short trips first so knew she'd be okay but it still surprises me just how adaptable she is to environment changes.

Breaking up the journey again on the way back home we treated the kids (and ourselves) to a two night stay at a luxury spa hotel in the Cotswolds. Rosie is being extra clingy and super demanding for Karen's attention at the moment and I was a little apprehensive as to how it would work in the environment of a hotel. Not always the most family friendly of places!

Rosie's constant need for attention coupled with shouting and sometimes screeching in public is becoming increasingly harder for me to deal with. As usual Karen just takes it all in her stride but myself well, I've been having a few wobbles again. I've been battling with that mistake parents of children with DS often make – 'Looking to the future'. I know it's counter-productive but I can't help it sometimes, rather annoyingly it's in my nature to be a little anxious. I keep thinking to myself is this Rosie from now on? Will this be our life, constantly worrying everyone's tutting or feeling sorry for us? I'm sure its just a phase but it consumes me at the moment.

Whilst getting ready for dinner I took the kids to the bar area giving Karen time to get ready without Rosie's constant need for her. For the first time in a long time I felt that wobble come over me as I struggled to contain her neediness, screaming and crying for Mummy. I took her outside held her and cried. I know all of this is contrary to the blog title but I've always promised to be honest and yes for a moment there I stood and wondered if I can cope. Life isn't always full of the Friday smiles, to be fair it mostly is, but equally there are moments that I struggle with.

That said when we sat down for dinner she behaved impeccably and enjoyed dipping her vegetables in a sauce for her starters, showing signs of OCD with the dinner plate! (see video) – swings and roundabouts as they say.

Tomorrow Rosie has her most important role so far where she is to be a flower girl at the wedding of our friends, Nicola and Brian. I can't wait to share some photo's of Rosie from the day.

Table manners from The Future's Rosie on Vimeo.

Wednesday, 16 July 2014

Mencap Top Talent

Well I promised in my last post that I'd let you know how the talk went... It's been three weeks and I've just not managed to find the time for one reason or another. So I apologise for taking so long! Anyway I've just referred back to my notebook that I carry with me everywhere and here is what I wrote as soon as I got settled on the train:

"What a tremendous experience for me today. I have, for the first time in my life, addressed over 200 people in a public talk for the Mencap 'Top Talent' day in Birmingham. It really was a huge honour for me to be asked to talk from a Dad's perspective about life with Rosie and also a little about 'The Future's Rosie' blog. I also touched on my concerns of the negative way in which we were told the news that our baby has Down's syndrome and how steering conversations and cornering parents to terminate a pregnancy at the point of diagnosis can also have a lifelong mental effect on someone –one of torment and regret.

I was made to feel extremely welcome from the moment I arrived at the venue. Anyone who knows me well and has had to put up with me the past couple of months will know just how nervous I was about delivering this talk so a warm reception was just what I needed to calm my pre-talk nerves.

I have been truly overwhelmed by the positive messages and feedback from people in attendance and would like to thank Mencap for giving me this opportunity and helping me tackle a personal fear of mine. As I sat down afterwards I looked across the vast room then back at the stage and thought to myself, here is yet another moment in my life where I've been encouraged by Rosie to challenge myself. I would never have done this without her inspiration."

I had the pleasure of meeting and chatting with so many inspirational people from Mencap including their Chief Executive Jan Tregelles who I must thank for the picture below which was pinched from her twitter feed!

Tuesday, 24 June 2014

Little Miss Swiss

I think I've just broken my own record for the longest time between posts! During this time Rosie has been unwell with a chest and ear infection (for over two weeks). It's been a long time since she's been under the weather so she deserved to have a good run at it! I'm pleased to say she's much better now and as a result is moving on leaps and bounds – making up for that time lost nose blowing.  I've also been busy preparing and practicing for something I never thought I'd see myself doing in a million years... a public talk to 200 odd people for Mencap which takes place this Friday in Birmingham. I'm so far out of my comfort zone my legs are going to jelly just typing about it! I'll let you know how it goes (if it goes well of course!).

For those of you that have ever wondered where Rosie's surname comes from; it's of Swiss origin. I myself am dual national (well treble if you count England and Scotland as two!) and therefore Rosie is one quarter Swiss. The reason I mention this is that I wanted to share a video with you (below) of my Dad and Rosie enjoying a Swiss nursery rhyme together. Rosie seems to be embracing her Swiss roots well as I haven't a clue what they're singing about but she appears to have full understanding of what's going on!

What I love about this video is how Grandad just 'gets' Rosie, they always interact so well together regardless of which language they converse in! When she swipes for him (it's affection) near the end he doesn't even flinch.

Rosie has an amazing and unique bond with all of her grandparents and we feel very privileged that we have all of their support. It seems a bit silly saying that now – of course they all love Rosie to pieces but I have read a lot of bits and bobs around social media recently that have really made me appreciate just how lucky we are to have such genuine support from our parents.

Rosie also had her (now annual) Cardio check up last week which provided myself with a full on work-out trying to restrain her! It really isn't a traumatic experience in terms of pain, its exactly the same as having a scan when pregnant, same procedure, same machines just over the heart area. However Rosie has been through so much in her early days that she tends to get very distressed when any medical professional comes near her. Even a simple visit to the Doctor will end in a minor hysterical meltdown. As soon as the consultant had finished and we sat her upright she smiled and laughed, chatting away to him as if the previous five minutes of seeming torture hadn't even occurred!

I'm delighted to say that everything appears in order. After the last scan she appeared to have residual leakage from the valve but even that has cleared up so we came out feeling extremely happy and, as always, eternally grateful to the wonderful medical team that made all this possible.

Grandad Future's Rosie from The Future's Rosie on Vimeo.

Monday, 19 May 2014

What a team!

Well what can I say about yesterday?

I've tried thinking of suitable words; Proud, emotional, humbled, grateful, tearful... but nothing comes close to explaining how I really felt seeing everyone, runners of all abilities, in their green Running for Rosie & Friends 2014 T-Shirts, pushing themselves around the 10km Great Manchester course in blistering heat – all for South Manchester DS Support Group. Okay some may say "it wasn't THAT hot" or, "I've ran in hotter weather" however the problem lay with the fact the temperature had increased by at least 10 degrees to those everyone had been used to training in, so it was a big deal for the vast majority of people out on the course. The ambulances and constant flow of paramedics on bikes was all the evidence needed to prove that. It really was a titanic effort from 'Team Running for Rosie & Friends 2014' and the post run meet up and drinks in the sunshine were a very welcome reward!

The main achievement came when I realised we had smashed our initial fundraising target of £2500. At the time of writing this we are at a staggering £3180 and counting...! The donation page for this event is open for another 4 weeks so if you'd like to donate you can still do so by clicking this link:

Thank you so much to everyone who not only ran but to each and everyone of you who so generously donated to a cause so close to us, especially in these difficult financial times. Also a special thank you to Anytime After 9 Ltd for so kindly financing our brilliant T-Shirts!

In this instance I think photo's speak louder than words so I leave you with a selection of our images from the day which should hopefully illustrate the effort we went to as well as the fun we had!

Monday, 12 May 2014

Taking a stroll

In true Rosie fashion any worries and anxieties raised in last weeks post were swiftly put to one side (for a short while at least) when she walked across the room for the very first time with the aid of a baby stroller in front of 'Mummy' and her physiotherapist.

Karen quickly caught the moment on video and sent it through to me at work with the message "Look at our girl!”. I assumed it would be a clip of her standing up holding onto the stroller before dropping to her bum, but when I played the video (edited version below) and saw her walk across the room I'm a little red faced to admit that my jaw dropped and the tears came on, full flow whilst sat at my desk! I had to run out of the studio to compose myself and then proceeded to watch it over and over for the next five minutes! 

I really didn't anticipate seeing her do this anytime soon due to her legs and arms still appearing so weak because of her hyper-mobile joints. She has obviously moved on much quicker than I had thought as this huge step shows in itself the improvement of strength to both her legs and arms.

I'd like to end this post by sharing one of the simplest and most precious moments I've known yet as a parent...

Yesterday morning (as is often the case of a weekend), the kids all piled into our bed and we were chatting, having fun, giggling along with Rosie when Joe just suddenly turned to Karen and said:

"Thank you Mummy".

"What for?" replied Karen.

"Rosie" he said.

Rosie-Strolling from The Future's Rosie on Vimeo.

Wednesday, 7 May 2014

Ever felt like pulling your hair out?

..."Might be a bit of a struggle in your case Tom!" I hear you say. However for Rosie things are a bit different. To be honest with you this post doubles up as a cry for help/advice/reassurance as much as anything else.

We have started to notice recently that Rosie's hair has started to thin at the front and a few scabs have appeared in the same area. It hasn't been until the last couple of days we've really noticed she has definitely lost hair and is developing a bald patch.

It was difficult to tell for sure how this was occurring until yesterday when our suspicions became evident – Rosie is pulling her own hair out. Karen came into the room and saw Rosie pulling at her hair and noticed a big clump of hair lay out in front of her.

As you do (not always the best advice) but instinct often takes you to Google to see what the cause may be. I'd love to say she's trying to look like me but joking aside it's clearly more concerning.

We had two thoughts initially, one that she may have an irritation on her scalp (hence the little scabs) and she's trying to attack it, itch it but grabbing at her hair too OR she has some deeper underlying issue. Google took me to something called 'Trichotillomania'.

From "Trichotillomania (also referred to as TTM or "trich") is currently defined as an impulse control disorder but there are still questions about how it should be classified. It may seem to resemble a habit, an addiction, a tic disorder or obsessive-compulsive disorder. Most recently, it is being conceptualized as part of a family of "body-focused repetitive behaviors" (BFRBs) along with skin picking and nail biting."

This morning Karen took Rosie to the doctors and both our suspicions were discussed as a possibility. Obviously our hope is that she has nothing more than a rash and the antifungal shampoo she has been prescribed will clear it up, relieving any irritation, however we have to think of the possibility of it being a behavioural disorder of sorts and how we might help distract her, prevent, or teach her to stop before it has a permanent lasting effect on her hair. Obviously the fact Rosie is very young and has Down's syndrome makes reasoning with her almost impossible at this stage.

If you have any experiences of something similar, any advice or better still reassurance it would be very much appreciated!

Tuesday, 29 April 2014

Spring into action!

It's been a busy but brilliant couple of weeks since I last posted an update on here. The long Easter weekend was spent with Uncle's, Aunts, Cousins and grandparents as we descended on the London branch of the family. On Good Friday us men were left to fend for ourselves (and the kids) whilst the ladies took a well earned break and treated themselves to afternoon tea at the Savoy!

In typical male fashion, weeks of meticulous planning for the 'men and kids' day took place... okay so we spent 10 minutes deciding we can't decide what to do, jumped in the cars and 'winged it' ending up at a farm in Lee Valley which proved to be a great success.

Needless to say there were lots of animals which gave me the chance to do some much needed practice with Makaton signing – something I do struggle to use (and remember). I keep persevering but it really doesn't come that naturally to me if I'm honest. Bud knows far more than I do which is great testament to the time and effort Karen puts in with her.

She wasn't keen on any of the animals at first as she would point to them and shout, "No!" before turning her head in the opposite direction in a rather stroppy manner. It was funny to witness but I was mindful that I didn't want her to be in fear of them so kept her at distance until she felt more comfortable with the environment. It took a Grandad and an Uncle to convince her it was okay and before long she was feeding a pony some grass and stroking it's nose!

In less positive news Rosie has recently re-introduced her vicious face grabbing, hair pulling and general attacking of the face. Whilst it seems nobody is exempt from the wrath of the Bud, the majority of it is felt by Karen and Rosie's friends of similar age – especially 'Layna' who spends a lot of time with Rosie. They'll be playing together nicely then suddenly Rosie will grab her hair. Thankfully, 'Layna' doesn't make a fuss and will just wait for adult intervention then carry on playing. Karen received a swipe the other day which scratched the surface of her eye causing a lot of discomfort so we are having to be extra vigilant at the moment. I'd like to say it's a show of affection as we previously thought but it's obvious now by her face that she knows it is wrong, it's clearly a form of attention seeking but how to resolve it is giving us a few headaches (and Karen sore eyes!).

Jumping back to better news again...  For the past few weeks Rosie has been getting herself into a crawling position, holding it for a while then falling back to her bum. A couple of days ago she was in this position again and suddenly attempted to crawl which ended up being a kind of half crawl half bum shuffle – I really can't explain it very well so I've included a video below!

Then only yesterday to our amazement she crawled properly for the first time, again there is a video of her doing this below. She was very pleased with herself and rightly so – it's a wonderful achievement and one which we're all very proud of especially as we thought she would bypass this stage altogether.

New Crawl from The Future's Rosie on Vimeo.

Rosie's first crawl from The Future's Rosie on Vimeo.