Showing posts with label Favourite post. Show all posts
Showing posts with label Favourite post. Show all posts

Monday, 17 March 2014

Lose the label campaign

This week is Down's Syndrome Awareness week - there couldn't be a more appropriate time for Ella to be featured in the powerful and emotive photo campaign entitled 'Lose the Label'...

It took a long time, but I don't think about Down's syndrome every day any more. 

And I don't see it any more either. I just see Ella. 


I know that won't be the same for other people who see her or meet her. No matter how I see my girl, the fact she has Down's syndrome will always be the first thing most people will notice about her. 

Yet, the fact other people see Down's syndrome first is not in itself a bad thing. It is after all a big part of who Ella is.  As I've said before, it doesn't define her or what she is capable of, but it will always be there and will always be noticeable to others.  If someone has a broken leg and is wobbling around on crutches with their leg in plaster, chances are you're going to notice their broken leg before you get the measure of the rest of them. The difference comes in how an outward disability or injury is then perceived by others.   

I often wonder what stereotypes people assume when they see Ella (some people are great 'experts' and just love to tell you all about your own child)... 'I bet she's so loving... likes Music... Loves to dance... Always happy... An easy child...'  

I've found that Ella is so easily put into a box by most people as soon as they meet her.  And yes, she can be all of those things some of the time but at the moment she is mainly just a stroppy, stubborn three year old with a fierce defiant and independent streak. Like anybody else, she has likes and dislikes, her own little quirks and a wide range of emotions. She takes toys away from her sister, has a slight obsessive compulsive need to shut doors and has a special ability to seek out the one person sat on their own in any given social setting and start 'chatting' to them (whether they like it or not).  

So, I've learnt through experience that there is a need to banish the misconceptions and stereotypes and to reinforce the fact that everyone is unique despite their outward appearance, whatever that may be. 

I came across the 'Lose the label' campaign on Facebook a while ago. Beautiful pictures of children and adults with Down's syndrome all with the same simple yet powerful phrase added to them. The pictures show children playing, dancing, walking, crawling, smiling, laughing, enjoying hobbies and holidays, crafts and sports. 

The campaign is about seeing and putting the person first, not their disability or syndrome. Ella is not a 'Down's child' or a 'Downs'.  Neither is she a 'sufferer' or 'victim' of Down's Syndrome. 
I have Down Syndrome. I am not Down Syndrome. I am Ella


A million and one things before she is a child with Down's Syndrome.
Our Ella Bean xx

View the 'Lose the Label' facebook page here.  Follow the campaign on twitter - search for @Lose_the_label.

Thursday, 22 August 2013

Superheroes

The following post is written for Learning Disability Week - an annual awareness-raising campaign organised by Mencap. This year it takes place from 19-25 August and will celebrate people with a learning disability, their families and supporters by asking the question; 
'Who is your real-life superhero'?


A real-life super hero to me is inspirational and courageous. They have the seemingly superhuman ability to come through the darkest of times, to keep fighting when others have given up and to see the faintest glimmer of hope when the odds are stacked against them. They keep trying, face every challenge with determination and achieve their potential through hard work. 

I hope over the last two years that I've shown you some of the wonderful things that having a child with additional needs brings. 

Here are some of the reasons why Ella is my superhero... 

courage

determination 

She's shown me the world from a new perspective

she's inspired me to try harder and do better.

We've had our fair share of heart ache dealing with Ella's 'arch enemies' (feeding issues and heart surgery) and it's only recently that I've felt able to box that period of our lives up, put the lid on tight and walk away.  I'll always worry that one day we might have to re-open that box - I'm a mum, nothing will change that.  But, for now it can just remain in the far reaches of my mind and gather dust.   In hindsight, we've been very lucky.  An amazing 'supporting cast' of nurses, doctors, surgeons, speech therapists, physio's, nursery staff, play specialists, dietitians, friends and family have helped our little super hero win many a battle along the way.

Through having Ella, we have had the fortune to become part of the amazing Down's Syndrome community (making friends both locally and through social networking sites). We share proud moments, advice, our bad days and sometimes we unfortunately share grief and loss when one of our wonderful children gains angels wings. 

So, when thinking of super heroes, I couldn't just mention Ella. Our community is full of them - amazing children, parents and families who have had so much to contend with.  They are truly inspirational and have taught me the true meaning of love, patience, compassion and hope.  Here are some of my superheroes from their own perspectives... 

Laura - mum to Milo


The unconditional love that I feel for my superhero, is such an intense sensation that I never thought it possible. Following a traumatic pregnancy where we were told that the complications surrounding his diagnosis of Down Syndrome would mean that he would never survive the pregnancy we were jubilant in the birth of our son ‘Milo’. Now 10 months old Milo has taught me so much along his difficult journey, he is my true superhero. Plagued by illnesses, needing 2 lots of emergency open heart surgery followed by a whole medical dictionary of complications Milo and I spent the majority of his first 6 months anxious in hospital. He has taught me the art of patience, of determination and above all of finding hope when you are told that there is none there to find. He has turned my happy world upside down and painted it back again with a new more vibrant set of paints with greater depth beyond which I could never of imagined xx


Rachel - mum to Florence

Superheroes have superpowers right? Well that means our daughter is a superhero too. Florence was born 20th November 2010 and since that day our lives have changed in ways we could never have imagined. Superheroes change into their costumes and save the world, and then they return to their normal lives. Florence arrived with her pants on the outside and has transformed us and we never want her to change. She has fought through four lifesaving surgeries with her oesophagus, heart, liver and peg insertion and countless hiccups but she never wavers and always comes back stronger. Florence has downs syndrome, meaning that she has to work harder than her peers to achieve each milestone, but work she does! Every achievement, every breakthrough, and every hurdle she overcomes like learning how to walk whilst carrying her milk machine in a back pack, leaves us in awe. Everybody has a potential superhero inside of them but when you have learning disabilities those superpowers shine through and we couldn’t be prouder of our little superhero xx

Florence

If you are lucky enough to know someone with special needs or a disability, you too know a superhero xx




She is clothed with strength and dignity and she laughs without fear of the future.
Proverbs 31:25


   

  





Friday, 5 April 2013

A letter to My Big Girl...

I wrote this letter to Ella a few weeks ago and have been wondering when to put it 'out there'

There has recently been a dark cloud cast over all the good being done to raise awareness, promote equality and change public thinking towards people with disability. I have started to form a response several times, but can't seem to put down what I want to say or say what hasnt already been said by others. I have therefore left the approach of writing a post directly about this issue to other bloggers and writers who are much better at writing and getting a point across than I am. 

I did want to do something, be part of the great swarm of responses to Mr Brewers comments. And my way is to share this letter from me to my girl.



Dear Ella (The Bean/Sweetpea/Beanster/Beansprout/EllaBella)....


I feel very lucky I got to be your mummy.  I'll be the first in line to admit it's not always been easy but I'm glad you have always been there to light my way. 

Looking back, I needn't have worried about all the extra things I had to learn (or thought I had to learn) when you arrived. 
Over the last 2 years it's not been the doctors, therapists or books that have taught me all I need to know, but you (and I get the feeling that will always be the way it is!).  

From the day you were born, challenges were placed in your way but never once have you let them stop you.  
Unfortunately, there will always be challenges and obstacles you will have to face as life unfolds.  For the ones you can't conquer on your own, you will have me, Daddy and everybody else who loves you to help you.  Nothing is impossible.

You completely changed my pre-conceived ideas of what I thought being a mum is all about.  
Through you, I've been able to see the world from a whole new perspective 
- 'A Different View' - 
and that's a privilege that not many people get the chance to experience in their one lifetime.
  
This is not what I expected motherhood to be, nor is it the path I may have chosen if given a choice.

 However, from day one you've bettered my expectations and shown me that the best things are often those that happen by chance, not choice. 
I wouldn't change you or anything that's happened since all 7lb 4oz of you came into our lives that cold November evening in 2010.   

It's hard to explain to you that a big change is about to happen, that our time with only you is rapidly coming to an end.  
But the challenge of being a big sister is one I know you'll take completely in your stride.  And you have so many wonderful qualities to share with your baby sister...
Your fierce determined & independent streak, caring nature and eager desire to learn - all balanced nicely by your contagious sense of fun and a generous sprinkling of  eye twinkles and cheekiness.  
A girl couldn't ask for a better role model.

Thank you for everything you've taught me and for making me a better person and a stronger mummy.  

I can't wait to see you shine in your new role.  

Love you always
Momma
XxX













Monday, 26 March 2012

Celebrating differences

International Down's syndrome awareness week has just finished.  This year is extra special as 2012 is the first year it has been officially recognised by the United Nations.  The world over there have been parties, community gatherings and fundraising events -all celebrating the babies, children, teenagers and adults with Down's Syndrome.  

March 21st (21/3) is chosen as the actual day of awareness to represent the 3 copies of chromosome 21 that is unique in people with Down's Syndrome.   


The following video is a photo montage that was put together for the week of celebrations.  Look carefully and you might spot Ella...


But lets not forget, it's not so long ago that a diagnosis of Down's syndrome or other disability meant a lifetime of social and physical neglect, banishment to institutions, exclusion and discrimination. 

Slowly, the world has begun to change but there is still a long way to go.
   
I think this generation will be different.  Children these days are exposed to others with special needs and disabilities from a much younger age, inclusion is thankfully now the norm.  Look at Ella - she has mixed with her peers from 9 months of age when she started a mainstream nursery.  She has thrived because of it and the nursery has embraced her and her needs just as they do with every child they care for. My hope is that Ella will remain in mainstream education so long as it remains the right place for her to be.  My expectations for Ella are high, as they would be for any child. 



I first met my wonderful friend Suzanne as we started secondary school aged 11.  Her physical disability - arthrogryposis - meant that her parents had had to fight hard to enable her to attend mainstream school even though she is one of the brightest people I know.  And this was during the last 20 years.  Suzanne has taught me a lot about living a life that has daily challenges and has shown me that anything is possible, especially when you have supportive family and friends around you.  I think knowing her has had a profound and positive effect on the way I dealt with finding out that Ella has Down's Syndrome.

Suzanne is now a much loved primary school teacher.  The 4 year olds who pass through her classroom each year learn so much about people who are, for whatever reason, 'different' even if they don't realise it.  They don't see Suzanne's disability, they just see Miss Cocks and that's the wonderful thing about children. It's also the wonderful thing about Miss Cocks!  

The following is a poem written by Suzanne and used with her permission...

“The Way I See It” by Suzanne Cocks
My life is colourful in so many ways
My external happiness everlasting
But as I sit alone, I ask myself
Who am I?  What am I?
A person alone – thinking, forever wondering ‘What if?’
Content with life, but unsure of the message life portrayed in my creation
Why am I different, or is it that others are different from me?
If only there were answers to my many questions!
But no – my life won’t change, I can only change how I look at life
My mind and body are as one just like yours – aren’t they?
The feelings of loneliness and insecurity are freed by the people physically opposite to myself who make my world ‘normal’
I hear you ask – what is normal?
But to me, normality is what others have and share with me through life’s experiences
Some may see this as denial – a failure to recognise the reality of who I am
I just see it as a way to go forward with my life.
As the years have moved on I have struggled to understand how and why my feelings have altered so much
Protected as a child from people who could damage my emotions – their hidden ignorance I failed to see
As my youth and innocence have disappeared I feel I should now have more control of my feelings and emotions and identify my role in life
I never dreamt these feelings would become more negative.
Instead of dealing with my differences I often try and hide them deep down in my thoughts
But events from day to day forever arouse them to my conscious mind
I am different – I often feel labelled – I am disabled.
I, like you, have an inner body which feels strong but is trapped in a world that is unique to me
In my world I see what you see, feel what you feel but cannot do all the things that you do
I do not wish that I had been created any differently but you have to accept the way I choose to deal with life as it is
I believe I am a better person for the experiences I have endured and am grateful for the opportunity to appreciate life from my point of view
I really hope that the ‘normal’ people I know live life to the full and accept how lucky they are!
They should not waste their time mocking ‘different’ people.
The power-staring eyes I have felt on me have at times been very painful.  Time helps you cope with this situation and makes you realise that, in a positive light, one can teach young eyes that it is okay to be different, thus hopefully improving the outlook and opinions of the younger generation.
As for the older eyes – well…. I’m just sorry their lives have existed in such ignorance – they don’t know what they have missed!
I have not just written this to help me personally but in the hope that people can try and see how my mind works
It may not be the same as the next ‘different’ person sees it but is unique to me
Who knows what the future will bring – all I know is that I am dealing with life one day at a time and at present could not be happier!
The following words from a prayer have inspired me to get on with life:-
‘Grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference.’
One day I hope to match up to these words and be forever happy!!!


   Suz and tiny Ella!
Thank you Suzanne x x  

And...
....a big, massive, huge thank you to my brother Tom who ran the Lisbon half marathon this weekend in aid of Ronald Macdonald House Charities.  £480 raised so far and well done to your knee for doing it, even though the last 5 miles were hard.  And thank you also to Graunty Ruthie and her colleagues for the £52.70 from the cake sale.


Quick update:
Ella is now crawling (but only backwards and not very far!).  She's really chatty and clapping, waving and pointing lots!





Looking forward to a weekend in Wales with my family next weekend.  Sure there will be pics and stories to tell next week....





Thursday, 15 March 2012

It's a wind-up

When we were little, we had a toy that my younger brother Tom was really scared of....wind up chattering teeth! 


I found a very similar version recently and bought them with Tom in mind.  I completely forgot I had them when he visited, so decided to see what Ella made of them....












Think we can safely say she's not a scaredy cat like her Uncle Tommy!...





Wednesday, 15 February 2012

For Rosie

I came on here to add a web address to my links page.  However, it felt a bit wrong to hide it on a page that I know doesn't get lots of views.  I felt that the link in question deserved to have a post all of it's own...  


We have met some wonderful people on our short journey since Ella was born and one of them is baby Rosie, along with her brothers Harry & Joe and their mum and dad Karen & Tom.  Rosie's dad has recently started a blog for Rosie. It's a lovely read and a great tribute from a proud daddy to his little girl - I look forward to reading more as Rosie gets bigger and her brothers lead her into mischief!


You can find the blog at:



It's been a while since my last post.  Not sure where the time has gone!
There will be an update over the next few days and lots of pics of Ella and what she has been up to...



And a little bit about me too!...


Back in a few days!

Sunday, 15 January 2012

Life in slow motion... I wish!

Life seems to be very busy at the moment. Work, nursery, flat to rent, appointments, social life, Ian's exam revision etc etc....


Ella is changing everyday, growing and learning.  She's trying to crawl, mastered finger feeding and continues to enchant us with her ever emerging character.  


We are hoping that her gastrostomy tube will be removed soon as we no longer use it... Baby girl fed herself a whole cheese toastie for lunch today.  A definite proud moment for us. This time last year she was NG fed, had lost her sucking reflex and her heightened gag response meant she wouldn't let anything in her mouth.  To me, the days of her feeding herself were years away and I certainly didn't think that I would be taking pictures like these just a few months later....







Hamster cheeks!

Just keeping an eye on daddy and Chris


I am starting to learn lots more signs (makaton) as she has a good understanding of the signs we are already using and is beginning to copy our actions (need to be more prepared for when she starts signing herself).  She has her own way of communicating 'yes' in answer to questions by putting her hands over her ears! (will try and get a picture).








More teeth have made an appearance too


To Ella, the world has suddenly become a very exciting place. Turning on light switches, rolling lots, exploring toys, flinging things are all favourites....


So is standing at every opportunity...



Splashing in the bath...







Pulling out the plug...





Books.  She loves books...





She also loves playing...





Happy Sunday xx








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