Tuesday 20 August 2013

Cornwall, chums and chips

It only takes a day or so back in work before the holidays dreamt of all year become a distant memory. We've had a wonderful time visiting beautiful Cornwall, bringing back with us some cherished memories of days out exploring and splashing about in the sea. We hired a lovely little cottage where we stayed with family, 'Aunty Ruth and Uncle Daniel'. I love the time a holiday gives you to reflect and unwind but also that valuable (well mostly valuable!) time you get being around the kids.

We couldn't travel all the way to Cornwall and miss a chance to meet up with Hayley (Downs Side Up). We have met twice before at organised events and our children get on so well. Hayley, Bob, Mia and Natty welcomed us to their home and we adults enjoyed having time to chat openly with one another whilst the kids occupied themselves – previous meets have been a bit hectic so this was the first time we had an opportunity to relax. We talked about all sorts, laughed a lot and shared some very personal experiences of the ups and downs of our DS journeys so far. Natty and Rosie spent some time playing shops, or rather Natty played shops whilst Rosie played throw the shopping over her shoulder! Natty is a joy to be around and her speech is superb – very inspirational for Karen and I to see the possibilities for Rosie. We know every child is different and will reach goals at different times, some will achieve things others won't – same as their peers, however Natty is a true example of how a families love, care and belief can trample over those initial fears and so called obstacles we're led to believe are true in the early days of a Down's syndrome diagnosis. I came away from that day with such positive feelings for Rosie, oh and a recommendation for Britain's best chippy too! Thank you to 'Family Down's Side Up' for a wonderful start to our holiday.

We treated ourselves to that chippy tea one evening and needless to say the fish and chips were amazing but what struck me more was just how at ease I felt in there. We sat in the restaurant area packed full of people of all ages, those that looked at Rosie were clearly doing so because she was being ever so cute, laughing and babbling away and not because she 'looked different', it was genuine cooing from the public and the staff alike. As Rosie is still relatively young and unable to walk she is often in public in a pushchair, I guess making her less visible than if she was running about. As a result of this I'm still learning to grow my thick skin and get a bit anxious about the inquisitive sometimes baffled looking 'stares' because up to now they have been fairly few and far between. Don't get me wrong I'm extremely proud of Rosie and wouldn't ever hide her away, I guess that's evident in this very public blog but I'm also not immune to feeling that pain now and then from those that stare – nobody likes to be gawped at no matter how thick skinned they are. Well this particular moment felt great, there she was on full display for all to see and not a moments awkwardness. Cornwall made us feel extremely welcome the whole time and I couldn't help but smile to myself as I felt another little moment of 'up yours' flying in the direction of a certain 'anti disabled' (former) councillor who claimed to represent the good people of Cornwall.

Wednesday 14 August 2013

Super Bud!

I'm extremely honoured to have been asked by Mencap to write this post as part of their annual awareness-raising campaign for Learning Disability Week. This year it is taking place from 19–25 August 2013 and will celebrate people with a learning disability, their families and supporters by asking the question;

Who is your real-life superhero?

This is actually a tougher question than it would first appear, I'm inspired by people everywhere, so many of those are people with special educational needs, each one worthy of the title 'real life super hero' in my opinion. I especially get a lot of hope and inspiration from those who are further ahead in their wonderful life than my little Bud. One such person is Sarah Gordy, a professional actress who happens to have DS. Sarah is a great role-model and a true example of how a person with special educational needs can achieve success and independence, blowing away any ignorant pre-conceived ideas I might have had myself before Rosie was born.

I was fortunate enough to meet up with Sarah. Like many, I've met or seen one or two famous people over the years but I can honestly say the first person to leave me genuinely start struck was Sarah. Her intelligence and charisma left me lost for words. We were at a private opening of a photography exhibition where I had a camera shoved in front of me and was asked to say a few words about the exhibits on display – rather embarrassingly I crumbled on the spot and was left standing there internally screaming for the world to swallow me up! Swiftly moving on the interviewer asked Sarah if she would mind saying a few words – I watched in total awe as she composed herself, stood in front of the camera and spoke so elegantly without a single drop of fear – putting my efforts to shame!

This was a big moment that taught me a great deal about how I see people with Down's syndrome. As I think back to that evening, I realise that I just saw someone standing there doing a far better job of being put on the spot than myself - I didn't stop to think this was a young lady with Down's syndrome showing me how it's done. I thank Sarah for (unknowingly) giving me this important moment in my life which made me look beyond DS and truly see the person.

Other heroes I see daily are all the wonderful adults with DS in full or part time paid jobs providing a genuine service to people and proving to any doubters their worth in society.

I seem to be gathering a 'team' of Super heroes, however every team needs a leader so if I HAD to choose one person then it must be my little Rosie Bud. Not only is she the apple of my eye but she has been my real life superhero from the very beginning. You might think ‘how can a two year old be a super hero to a grown man?' It’s quite simple really.. all I have to do is think back to Rosie’s first year where she endured more than I have ever had to in my entire life. Rosie underwent open heart surgery at the age of six months for a complete AVSD repair. You can read about that experience from my perspective here: Rosie's Surgery

There is also the fact that this little two year old (with her special powers of course) has managed to adjust my outlook on life and really changed the way I see the world - I've been around for 30 something years now and I'm almost sure she's the only person to have had such a major positive effect in such a short space of time.

Below is a 'letter of love' I wrote to Rosie on Valentines Day this year which I hope will explain just how her super special heroic powers have helped me and continue to inspire me everyday:

Dear Rosie,

I've never been one for writing, in fact rarely do I even make time to read, but then you came along and brought out a side in me I never knew existed. Without your inspiration I would never have known this joy of being able to share my love and affection for something so pure, so innocent and so beautiful – that 'something' my dear is you. See I started writing my blog because the feelings I had when I first learned of your extra special chromosome were so very new to me, I felt a little bit frightened at times to be honest because I didn't really know anything about Down's syndrome and the special powers its given you. There were also feelings of overwhelming protection (those ones will never ever go away) and all this before I had even laid eyes on you. Then you came into my life and changed it forever and for the better too. I wanted to let others know how your extra little chromosome is nothing to be afraid of, how very precious you are, how you have this amazing ability to make everyone smile, how you have fulfilled (over and above) my dream of adding a daughter to our wonderful family.

I consider myself a very lucky Daddy – so proud I am that I sit here writing my feelings down without being afraid to tell everyone, you may learn when you're older that it's not always the easiest thing for a man to do, but with you by my side I don't really worry about that anymore. You have taught me so much about myself, brought out a confidence in me that has been hiding away for years. 

I won't ever be able to thank you enough for all you have done for me, all that you have taught and continue to teach me, BUT I can promise to do everything within my ability to raise, protect and help you realise any dreams you may have for the future. You see Rosie, contrary to what some people may think or even sometimes say, you can (and most likely will) achieve anything you want to.

All my love.
Daddy. xxx

Rosie not only brings abundant joy to our family with her cute, witty and very mischievous ways but also to thousands of others who look forward to her bringing their weekend in with a smile every Friday on her dedicated Facebook page

I can also be found rambling away on twitter under the name @FuturesRosie

Why not get involved by sharing your story on Twitter, post on Facebook, write a blog or post a photo, using #LDWeek13.

You can also learn more about Mencap's Learning Disability Week campaign for 2013 here: http://www.mencap.org.uk/get-involved/learning-disability-week