Wednesday, 2 April 2014

Every little step...

Well I'm happy to say we've survived March again – without doubt THE most chaotic month of the year in our house. Thankfully all birthdays passed off without too much trouble other than the obvious dent in the the monthly budget – Down's Syndrome Awareness Week also kept us very busy and proved another huge success!

Unfortunately we've been less successful in encouraging Rosie to bond with 'C3PO' (her new walking aid). There's possible blame on our part due to having such little time to persevere, although the whole thing feels a bit too cumbersome for her to manage at the moment which isn't making it any easier. However...

....Rosie seems to have taken a whole new lease of life without C3PO! Whilst out on a family walk to one of our favourite places, Quarry Bank Mill, I took Rosie out of her pushchair, held both her hands and we walked together – it wasn't very fast and we took as much time as needed but she went further than she's ever gone before. Previously she'd been going maybe three or four steps before plonking herself back on her bottom!

The more we walk with her now the more co-ordinated she's getting with her legs, which is giving her more confidence. Her feet are also beginning to point more in the direction of five minutes to one, rather than a quarter to three! She's a long way off supporting herself but another breakthrough came yesterday when she walked across the living room floor with Karen holding just one hand! Will she be walking soon? I'm not so sure but watch this space... it's certainly looking more promising!

As many of you will know (and already be tired of hearing no-doubt) The Future's Rosie has been shortlisted in two categories for the 2014 MAD Blog Awards – 'Blog of the year' and 'Best Writer'. Thank you so much for those of you that nominated and for everyone who show's their continued support it means a great deal to me. Blog of the year is a judged category but Best Writer is up for public vote, which is where I need your help (again!)...

I find canvassing for votes very difficult as I worry it gives the impression I'm trying to pat myself on the back which couldn't be further from the truth. To win would be a marvellous honour, yes, BUT more importantly would help the blog reach a wider audience.

Last year it was fortunate enough to win 'Best New Blog' which in turn raised the profile and gave me opportunities to share the word via articles on BBC News and National Press. The blog now reaches more people as a result and I believe that an increasing amount of new parents have stumbled upon it whilst searching online – some finding it a help in the early, delicate days of trying to 'come to terms'  with a diagnosis of Down's syndrome with their child.

If you would like to vote for 'The Future's Rosie' as 'Best Writer' you can do so by clicking the link below, anyone can vote so if you wanted to ask your friends too I won't be offended ;)

Wednesday, 19 March 2014

Bud turns three

As you may remember from last year March is a truly crazy month in our household with all three of our children celebrating birthdays!

Rosie turned three this weekend and we celebrated at home with family and friends, all of whom have been an invaluable support to Karen and I since the very beginning of our journey – a journey that is rapidly teaching us how Down's syndrome really is nothing to be afraid of – something we may not have believed in those early days.

The party for Rosie was brilliant, we had thought it just a small gathering until we realised there were 18 children running riot, which in a modest house like ours is quite some achievement. My heartfelt apologies go out to our very understanding neighbours!

Prior to Bud's party we attended a fundraising do for our local support group called 'Party on Down's' – organised by parent members who put an incredible amount of effort into making it a huge success. I was left gobsmacked by the number of people in attendance from parent members to general public. At the time of writing I believe in excess of £4300 has been raised! I'd like to extend a thanks to everyone involved for such a great event, Rosie had so much fun 'bum-shuffle dancing' and generally getting in everyones way!

The kids' birthdays usually make me stop and think how quickly they are growing up, however this year in Rosie's case, I actually find it incredible she's only turned three, It's like we've had her with us forever. It's difficult for me to remember a life without her – I don't mean to imply it was better before, quite the opposite in-fact. Rosie has enriched all of our lives in such a positive way.

It's also difficult to comprehend she's only three when I consider everything she's already been through. I know I've written this before but Rosie has endured and come through more in her early life than I've ever had to in the erm 30 (cough) something years of my own – that is why she's more than just a daughter she's also my hero too.

At the same time as looking back I'm looking to the future and whilst some thoughts fill me with fear there are plenty more that give me good reason to be excited and hopeful. As I scribble down this post I'm sat on a train to London where I'll be attending a private viewing of 'The Reveal' by 'Heart & Sold'. It promises to be an exciting exhibition of artworks by a collection of extremely diverse and talented artists – all who happen to have Down's syndrome (DS). A fantastic example of the potential people with DS can achieve given the same chance, respect and attention as their peers.

I'm now writing whilst sat on the train on the way back…

The exhibition was, as promised crammed full of exceptional work and left me stunned by the superb quality of art on display. I had the pleasure of meeting the director of Heart & Sold, Suzie Moffat who told me of the importance in choosing only artists that genuinely deserved to have their work exhibited, this is after all about seeing beyond the disability and recognising the raw talent. If you are in London this week and get chance please do visit the exhibition I promise you won't be disappointed.

Whilst in London I was also honoured to attend a Parliamentary Reception in the House of Commons hosted by Dr Hywel Francis MP and the Down's Syndrome Association (DSA). The reception was to highlight the need for Better Health Care for Adults with Down's syndrome and to launch the 'Adult Health Book', which I had the pleasure of designing. This is another vital step forward in helping improve the lives of people living with DS. I won't mention too much about the event as the DSA will be reporting it themselves in due course. I was particularly struck by Sara Pickard, the independent councillor for Pentyrch Community Council who has DS. She delivered a flawless speech emphasising (from first hand experience) the importance of providing better healthcare and more regular check-ups for adults with DS.

Contrary to what people may think I haven't met many adults with DS so seeing people like Sara doing her work so eloquently really fills me with confidence for Rosie's future. I could only dream of standing there in that environment and speaking so well. Sara closed her presentation by pointing out, "So Tuesday I'm delivering a speech in the House of Commons, London, then on Friday (World Down's Syndrome Day) I'll be presenting at the United Nations in New York!" If ever there was an example of the important roles people with DS can have in society... An amazing young lady who made me think the future's most definitely rosie!

More information about the DSA's Awareness Week topic of 'Better Health Care for Adults with Down's syndrome' can be found here

Suzie Moffat, Director of Heart & Sold (centre at back) with the artists

Thursday, 27 February 2014

Learning to walk & fork

Last week we had a visit from Rosie's physio who said she'd noticed a big difference in her, which is so encouraging to hear, especially from a professional as I often lose sight of how well she is doing – mainly because of how slow Bud is to develop physically (plain lazy like her Dad!).

Every now and then I sit wandering (and worrying) whether we are doing enough ourselves to help her develop, but the truth is there really is only so much we can do without losing sight of the fact that we have two wonderful Sons who also require Mum & Dad time.

As any parent of two or more children will know, dividing time and attention equally and fairly amongst siblings is no easy task, but having a child with additional needs makes it all the more tricky. I think we manage okay in general and the boys do love to be included when helping encourage their little sister but it is something I’m constantly aware of. I’m hoping this will become easier and balance itself out naturally in time. ANYWAY I digress...

The physio left us with a new walking aid to help motivate Rosie to her feet. It enables her to hold on whilst increasing leg strength and confidence. As you’ll see from the picture below we certainly have our work cut out making such a contraption appeal to her. There were some excellent suggestions over on the Facebook page of how to ‘bling it up girlie style’ with balloons, ribbons and resprays! Unfortunately it doesn’t belong to us so modification isn’t an option. Although I have taken on board the genius suggestion by one commenter and named it 'C3PO'!

Our challenge now lies in how to make it appeal as a game or as something fun. You’ll have to watch this space (not too closely though) as we have yet to find a winning solution!

Last Sunday, whilst relaxing and enjoying a family roast dinner we were treated to another fairly significant development by our clever little Bud. For the very first time we witnessed Rosie holding her fork, pushing it into her food and bringing it to her mouth. This might not sound like a big deal but to us it really feels like a huge leap forward in her understanding of eating. For months we've tried teaching her how to bring food to her mouth with a spoon but she usually gives up after a few attempts leaving a complete mess everywhere. Her food is still mashed as she struggles to get the concept of chewing so seeing her go for the solids we put in front of her in itself is wonderful progress – although quite why she chose cauliflower when carrots were on offer I will never know, she got that bit all wrong surely?!

If you enjoy reading about Rosie it would mean so much if you'd take two seconds to click the link below and nominate us in the 2014 MAD Blog Awards. It would be great to see Down's syndrome represented and recognised there again. Please enter the web address to the categories you think it fits best. 'Blog of the year' and 'Best Writer' for example ;) Thank you  x

2014 MAD Blog Awards Nominations

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Friday, 14 February 2014

Two today!

Remembered at the last minute that the blog is two years old today and seeing as I haven't prepared anything to mark the occasion here's a little 'off the cuff' and if I'm honest pretty naff poem:

Roses are Red

Violets are Blue

It's Valentines Day

And 'The Future's Rosie' is Two!

I really must thank you all for your constant and seemingly endless support, your words of encouragement and wisdom. It all really does mean so much.

I'm raising a glass to you all tonight

Much love.

Tom & Rosie

Tuesday, 11 February 2014

Neither up nor down

I'm happy to say that Rosie's biting and face grabbing has subsided quite considerably. Whilst it hasn't stopped altogether it's certainly a step in the right direction and we anticipate it disappearing completely in the coming weeks – wishful thinking maybe but we can certainly hope.

Since Bud has learned to climb down safely from the couch she seems to have gained a lot more confidence in attempting more physically demanding challenges. I've made no secret of the fact that I get quite anxious at the prospect of her being unable to walk as she never shows any interest. As soon as she learned to shuffle about on her bum it was as if she thought she'd 'made it' in life – after all she can get from A to B and for those 'out of reach' items her ever doting brothers are constantly on hand. Well I'm delighted to say that my anxieties have been kicked into touch a little recently!

A couple of weeks back Karen texted me at work to say Rosie had just pulled herself up on the side of the couch and managed to stand upright for a short time. She has only done it a couple of times since and sadly I have yet to witness it.

However last night Rosie treated us to the biggest and best surprise of all when she figured out how to get up onto all fours with her legs locked. We couldn't contain our delight as we clapped, cheered and made a general fuss of her – which of course encouraged her to do it again...and again...and again giving me time to rush upstairs and grab the camera to get shots of her (below) through the various stages. The technique she uses looks quite painful as her legs seem to bend backwards! It's ridiculous how bendy she is and I guess, as a result of her hyper mobility, she has to find her own unique way of getting onto her feet no matter how awkward it appears to us!

We're so proud of little Budlington and I see this as one of, if not her biggest, physical achievement to date. Clearly there is a long long way to go before she's confident on her two tiny feet unaided but this is a monumental leap forward to achieving that goal.

Tuesday, 14 January 2014

Bud Bites Back...

Thanks to our very generous family and friends Rosie has been well and truly spoiled again this Christmas time. She has plenty of new books and a whole array of new toys to help her move on with her development. Karen reminded me that last year Rosie's favourite present was a silver scouring pad!  The sensory engagement was great as it glistened and it's rough prickly texture kept her fascinated for weeks. It shows how far she's come in a year though as her play is so much more advanced. Bud now enjoys the challenge of shape sorting, basic jigsaws and even mothering her new baby. To be honest she hasn't quite grasped the shapes and jigsaws yet but she's having great fun trying – As long as we keep heaping the praise on when she's successful I'm confident she won't give up trying.

In less positive news Rosie's behaviour has taken a sharp turn and not for the better! The clue lies in the title of this post – 'Bud Bites Back'…shoulders, arms whatever's in reach! Over the past three to four weeks Karen has been left black and blue from Bud bites and all of us at some point this weekend felt the swipe of Rosie's right hook as she attacked our faces grabbing and smacking. It's as if she gets overcome with excitement that she channels her energies into lashing out as a means for release. At one point she brought Joe to tears after throwing a toy train which struck him on the lip – rather than showing her usual remorse (like crying herself) she tried her hardest to charm her way out of trouble by giggling and laughing (see last photo below to get a feel for what we're dealing with here), very cute yes, however we are determined not to cave into her 'butter wouldn't melt ways' as they will only make her more and more mischievous and I guess (as with any child) all the harder to control her behaviour later on in life. Is it frustration perhaps? Is she suddenly struggling with communication? We are not sure but obviously hope it subsides soon.

Karen has been busy the last few days teaching Rosie a very basic but important skill for someone who cannot walk or fully support herself unaided – how to safely get down from the couch! She is slowly mastering it but we still need to be on guard as there are moments where she'll forget and will quite happily attempt to shuffle off the edge face first!

Monday, 23 December 2013

Season's Greetings

Christmas is nearly upon us! I have one more day left in work then it's feet fully up for the festive period – as much as three children will allow anyway! We really look forward to this valuable family time together and will never take it for granted as we think back to Rosie's first Christmas spent in hospital.

Rosie has been getting herself in the festive spirit by playing the part of an Angel in a 'mini' Nativity play at one of the local toddler groups she attends. Needless to say we thought she looked adorable sat with her friends, dressed in a white cloak and tinsel halo. I was really proud at how she managed to keep the tinsel on her head for most of the performance whilst staying relatively still too.

The last couple of weeks haven't been without mischief either as Rosie decided to go on one of her exploratory missions to the kitchen where Karen found her emptying the contents of a box of powdery cereal all over herself and the floor! I was at work at the time and received a picture message of the mess saying, "Look what I've been doing Daddy".  I couldn't help but laugh, her 'caught in the act' face is just brilliant. As no real harm was done and the mess was already made Karen decided to let her play in it for a while which she thoroughly enjoyed!

Rosie has also been busy developing her vocabulary and yesterday added word number 10 to her slowly but surely increasing portfolio. It's with great pride and embarrassment that I can unveil word number ten as (drum roll please)...


She was sat on my knee merrily trumping away (*note to self, avoid sprouts in Bud's Christmas dinner) when I said, "Rosie will you please stop making those Bum noises!" to which she replied, as clear as day with, "Bum". I couldn't help chuckling (bad Dad alert!) and because it raised a laugh she kept saying it – with much encouragement from her cheeky brother Joe! Typically of all the ten words she can now say it's the one that she pronounces the clearest! I'm hoping a lack of encouragement will put it out of her mind for a while.

Bud's vocabulary so far:

1. Addy / DadDad (Daddy)
2. Mum-ah (Mummy)
3. Ba ba (Bye Bye)
4. Nu nigh (Night Night)
5. Leh Low (Hello)
6. Ess (Yes)
7. Oh (No)
8. Layna (Helena – [her best bud])
9. Dod (Dog)
10. Bum.

On a less embarrassing note the year has ended on a very proud high after I was interviewed by TOTS 100 for a special feature they have been running throughout December celebrating five inspirational parent bloggers of 2013. It was a genuine surprise to be asked and a real honour to be included.

Some of you may recall a post from March titled, 'Bionic Boy' written about our friends little boy who was cruelly taken from the world far too soon. Well yesterday would have been his second birthday and we were extremely privileged to be amongst their guests at a wonderful celebratory party packed full of family and friends – all of whom have been touched and continue to be inspired by their wonderful son, Harry.

I urge you to read this beautiful letter written to Harry on his second Birthday by proud dad Ian. I cannot begin to imagine the pain and daily battles parents must face when losing a child and I'm in awe of Ian's ability to convey his feelings into words: Happy Birthday Harry

As this is likely to be the final post this year I'd like to take the opportunity in not only wishing you all a very Happy Christmas and 2014 but also thanking you for all your support. It's been a fantastic year for the blog and the accolades received really couldn't have been achieved without your help. I hope you will continue to enjoy following Rosie and her progress next year.