Showing posts with label designer genes. Show all posts
Showing posts with label designer genes. Show all posts

Thursday, 3 September 2015

Starting school

On Monday, Ella's next adventure begins...  

The Education Health and Care Plan has been finalised, the school uniform bought and my head is fit to explode with equal measures of pride, worry and love.

My big girl is going to school. And I reckon she is going to be amazing.  

I have seen such a change in her over the last few weeks.  She is getting more independent at dressing herself, can do forward rolls, will wear her glasses without fuss for most of the day and has started storytelling/talking about things we have done. Her speech in general has become much clearer and she's using lots of new words and phrases. 

She is taller, more confident, more chatty and I can see she is very ready to start school.  

And she will be going to our local mainstream primary school. Something that seemed so uncertain and so far away almost 5 years ago when we were told Ella's diagnosis.

And the children starting this September will have such a different and enriched education. Along with Ella, there are also 6 other children with varying additional needs starting  at the school in reception this year.  The school has embraced this unprecedented challenge and have been very supportive and understanding of Ella's needs and our worries/concerns as her parents as I am sure they have with the other families too. They know our children have as much to teach as they do to learn.  I still have lots of worries about how they will meet each individual child's needs and how the support for each child will work in practice. It's just all new and unknown for us and seems so much more of jump than her previous move from nursery to pre-school. 
Ella's teacher at pre-school was brilliant. She knew, loved and nurtured every single child she taught no matter their abilities. She ensured that everything possible was done to allow each child to flourish and to start them on the path to reaching their potential.  When she came to me one afternoon before the end of Ella's last term at Charnwood to tell me she had a new job, I was shocked and sad to hear that she would be leaving.  That all changed when she explained that she had got a job as the Special Educational Needs teacher at the primary school Ella and several of the other children were moving to.  I can't tell you how much it means that she will be there with them all.  She knows them, knows their personalities, their temperaments and how they learn best.  She is a perfect advocate for them and Ella absolutely loves her. Without Bianca there, I know that this experience would be a lot more daunting.  

In so many ways I just want Ella to stay little. So I can keep her safe and protected and loved - always. I'm also very excited for her and full of anticipation and expectations. 

Reading, writing, maths may not be easy for her and may never come. But I know she will try her hardest with all the new challenges school will bring, like she has always done. 

The main goal is that she is happy in her new school - then anything is possible

Good luck Ella Bean xxx 

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.

Monday, 24 June 2013

Screening debate

It's going to take me a while to gather my own thoughts over the recent developments and inevitable ethical debate surrounding pre-natal screening for Down's Syndrome. Lots of facts, figures, articles, comments and experiences to read.  

If you don't know what I'm talking about, start here...

So, for now, I will leave you with a post I wrote on this topic last year and a picture of my beautiful girl...

Saturday, 13 April 2013

Shifting Perspectives 2013

As I mentioned earlier in the week, we've been very busy lately.  One day trip in particular was a special experience and deserves a post all of its own.  

We took the train down to London (which Ella hated for the first 10 minutes of the journey - really crying, saying 'gone, gone, no, no'.  At one point she even resorted to signing 'sleep' and saying 'night-night'. We managed to calm her with her crayons and her favourite snack of popcorn and dried apricots and then everything was OK and she actually enjoyed the rest of the train ride...much to the relief of the people sat around us I'm sure!).  

We combined a visit to the Southbank with the opportunity to catch up with family and friends who live in London.

The reason for our day trip was this...

Since 2005 a collective of photographers have explored the potential for photography to change perceptions and challenge people's understanding of Down's Syndrome.  

The outcome of this pioneering idea is the 'Shifting Perspectives' exhibition - a showcase of many thought provoking and beautiful pictures all showing that people with Down's Syndrome live, love, work, play and are able to contribute to their communities and society as a whole.

The exhibition has been shown every year since it began at the Oxo gallery on the Southbank in London.  Not only is this a prominent exhibition space with plenty of passing people, it also allows the work to be presented to people who may not know a lot about Down's Syndrome and who may not have set out that morning (or any morning) to learn more about it. 

I have visited part of the exhibition before as a few of the pictures were touring at Leeds University which coincided with my brothers graduation last year.  However, as it is the last year the exhibition is going to be shown at the Oxo and as it was being exhibited in its entirety, we decided to take the opportunity for a day trip.  

It was lovely and I felt very proud to have Ella with us too.  

The weather was still wintry despite it being March and the walk from Waterloo Bridge to the gallery along the Southbank was freezing! So we decided to warm up and went for lunch before heading into the exhibition.  Ella delighted us by showing off her self-feeding skills (we know she can do it - nursery tell us so!).  She shared my spaghetti bolognese and I reckon she ate more of it than I did...

We visited on a Sunday, just after lunch and found the exhibition halls very quiet, although we hear that it had been extremely busy during the week and that the preview evening was packed.  As you walked into the gallery space, this was the picture that greeted you (I took this at the Langdon Down DSA headquarters at a conference last year)...

'365 by Richard Bailey' - a montage of 365 children who represent the 1-2 babies born everyday with Down's Syndrome

The picture was at low level and Ella loved it.  She kept going back to it and you could hear her from around the gallery saying 'eye', 'nose', 'mouth' as she pointed to each face.  I was quite pleased it was quiet as Ella was rather loud and enjoyed running through the gallery spaces. We met up with both my brothers Tom & Henry, their other halves Vicki & Izzy and our friend Stewart at the gallery -  I was extremely grateful for the extra hands to help chase after Ella!

We took the opportunity of having us all in one place to get a family photo (thanks again Stewart)... Keeping Ella still was more than a little tricky - she's now in training for Tom & Vicki's wedding in September, hopefully we'll make progress (otherwise look out for the blur on all the photographs!)...

'Put me down....!'

It was strangely emotional walking round.  The wide range of pictures, words and stories on show were very thought provoking - probably more so to a parent of a child with Down's Syndrome, like me, than the general public...A glimpse of other parents fears, their hopes, experiences, photo's from the workplace, daily life, weddings, families, children with their siblings.  And the wonderful 'Safe Haven' images showing mums-to-be, all with a pre-natal diagnosis of Down's Syndrome (including our friend Emma who is mum to Henry).  

Looking at the pictures helped re-affirm that I am right to have hopes, dreams and high expectations for Ella - and I have absolutely no doubt that she'll have her own too!

The exhibition was manned by a representative from the DSA and, as the gallery was so quiet, I was able to hear some of the questions that people passing through were asking.  The two I remember are 'How does Down's Syndrome happen?' and 'Is there a cure?.'  The responses were factual and thankfully from someone who obviously knew what they were talking about.  However, it made me realise that the general public are very unaware of the basics of DS -  what it is (three copies of chromosome 21 in case you didn't know!), how it happens, why it happens or who it happens to.  I couldn't help but feel uneasy. If people wandering into a gallery are asking these questions then how are mums-to-be expected to make decisions regarding ante-natal screening?  Anyhow, I digress...

We bought the Shifting Perspectives book a while ago after I had enjoyed the iphone app so much (links later).  There was one selection of photographs that for some reason stuck with me after I first saw them... 'The Facts by Emer Gillespie'.  

A clinical textbook given to them as new parents by health professionals that laid out in bullet points the physical features of Down's Syndrome is transformed by their beautiful daughter into a visual representation of each feature (some she has and some she doesn't - like all people with DS not every feature is present)... 

Her epicanthic folds, singular palmar crease, nuchal fold.  But it's the child in the photo that captures me - the beautiful smile, vibrant red hair, fair skin and freckles.  All the little things that make up who she is - as her mum puts it - 'Laoisha is a million other things besides being a child with Down's Syndrome.'  And I guess that's exactly what I want for Ella - people to see her first and not the fact she has Down's Syndrome. 

Another favourite part of the exhibition was, what we have now called, the 'doodle room'.  Lester Magoogan is an artist who produces humorous, evocative and simple line drawings and was the first person to receive the 'Princess Diana Memorial Award'. He also has Down's Syndrome.  

In the middle of the room where his artwork was on display there was a table. And paper. And pens.... Cue some good fun (and a bit of mess)!...

Yup... she ate the pen...


We really enjoyed the exhibition and I'm glad we made the trip to see it.  Shifting Perspectives will soon be touring and you can find out more about where it will be and when on the Down's Syndrome Association website

There is also an ipad/iphone app which is free and contains a good selection of the photographs in the collection.  You can find it in the iTunes store or visit the exhibition webpage:

And if you want something for your coffee table that you can pick up and browse through then there's now also the Shifting Perspectives book which you can find using your favourite bookstore:

We were all ready for a coffee and headed back down the Southbank and landed at the British Film Institute.  My cousin Rachel and her family came and joined us.  It was lovely to see them all and meet baby Adam for the first time... Stewart, Ian & Tom did a great job at keeping the toddlers entertained, with the help of some props and snacks...


All too soon, it was time to head for home.  I even got some quiet time on the train....

Another busy weekend awaits, have a good one everyone xx

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

Monday, 25 March 2013

Lots of odd socks...

This is a positive post, I promise just bear with me while I give some background (or just skip to the bit with pictures...!)...

Down's Syndrome awareness week 2013 is now over.  And this year, it caused quite a lot of comment and raised a fair few eyebrows from within the DS community (and not all of it good).  

I'll take you back to the beginning of the year when Down's Syndrome International (DSi) unveiled this years awareness theme - 'odd socks'.  Maybe it's because I am still new to all this and for the fact that I know Ella for who she is and not as a diagnosis, but my initial feeling towards the idea was quite positive and to be perfectly honest, I didn't really think too much about it.  Others, however reacted very differently.  The idea of using the word 'odd' in relation to raising awareness for DS was clearly upsetting and disappointing to a lot of people - parents, charities and organisations the world over complained - open letters, blog posts, social media - the message from the people was clear, 'odd socks' was not a hit.  

And so DSi swiftly (and a little clumsily) changed their awareness campaign to 'lots of socks'. A less tangible idea in many ways and it was at this point I started to wonder whether we actually needed a theme for the day or if it should be celebrated and given the recognition it deserves by people choosing their own ways of raising awareness.  Last years awareness day marked the first year it had been officially recognised by the UN and there was a big, global sense of inclusion and celebration for people with Down's Syndrome.  This year has been seen by some as a step backwards and that a sense of difference, rather than inclusion was the overall message portrayed.  

That said, I stuck by the original idea of odd socks.  I wasn't aiming to change the world (not this year, anyway!) and saw the day as an opportunity to educate those I see at work, Ella's nursery, friends, colleagues - our immediate community (as well as raising some money for our local support group).  The way I interpreted the socks theme was this:

Socks don’t have to be the same to be worn together... The idea of the day is to celebrate difference, promote inclusion and to have a bit of fun. Regardless of colour, pattern, material or size, socks are actually more alike than different. And the same goes for people too.

Ultimately, it's important to remember that awareness week is (and has been) a positive, global and important part of the year for all involved, however money is raised and however it is celebrated.  

We have had a great week and I hope that all the people attached to all the feet below can say the same.  I received photo's from friends and family all over the world so thank you!

I like that I can remember who is attached to the feet shown and that some of them tell such poignant and brave stories.  Wearing odd socks for a daughter who's awaiting major surgery,  for a much missed and loved baby boy, to remember our children's bravery and celebrate the many things having them has taught us.   

I wore mine for Ella, for her friends and the wonderful people we know because of her and for those families in the DS community who will benefit from our fundraising efforts.   

My ward and Ella's nursery raised £126 in total, Granny Karen's workplace raised £270 and there is still money coming in from other friends and relatives.  We took the donations we had to the Chatterbox group on Saturday and they were very gratefully received.  Thank you to everyone who took part!

So there you have it - lots and lots of odd socks!

More on what Ella has been up to and what else we did to celebrate World Down's Syndrome awareness week soon.

Happy Monday everyone xx

Wednesday, 27 February 2013

Keep calm and get your odd socks on!

The Down's Syndrome Association have produced a limited edition T-shirt which is nicely timed for this years World Down's Syndrome Awareness Day, to be held on March 21st. 

Having seen several hundred lovely pictures of people proudly wearing their T-shirts pop up in my news feed on Facebook and Twitter I decided to purchase one for Ella... 

The global theme chosen for this years Down's Syndrome day is 'lots of socks'....

And there are many different ways people are planning to raise money and awareness...wearing wacky socks, extra socks, silly socks, socks on the ears, socks on the hands - you get the idea.  

We have decided to ask people to wear odd socks and donate a few pennies to raise money for our local support group.

This is my own interpretation of the 'socks' theme...

Socks don’t have to be the same to be worn together... The idea of the day is to celebrate difference, promote inclusion and to have a bit of fun. Regardless of colour, pattern, material or size, socks are actually more alike than different. And the same goes for people too.

'Socks' also tie in very nicely with Ella's newly acquired walking skill (even though she is barefoot in the pics!)...

Here is our poster for the day:
I would also like to ask that if you do take part, if you wouldn't mind taking a picture of you/ just your feet wearing the odd socks and sharing them with me. 

You can email pictures to with the subject line 'odd socks' or post them to our page on Facebook.  

I want to make a World Down's Syndrome Day montage/collage of people and their odd socks so by sending me your pic you are allowing me to use it for the purposes of the blog - thank you in advance!

So, Keep Calm & Get Your Odd Socks On!!

For more information you can visit the official World Down's Syndrome day web page:


Related Posts Plugin for WordPress, Blogger...