Sunday, 31 January 2016

Losing Down's syndrome?

This is Ella at 2 days old, snuggled with her daddy.  
Loved and protected.
All that she knew and all that she needed.



And in so many ways, I wish we could keep her just like this.  For the older she gets, our ability as her parents to protect her and keep her safe and happy will continue to slip through our fingers. 

And I feel the need to protect her from so many things as she grows...

From others
From stereotypes and ignorance 
From society 
From Science 
From learning that she is not deemed equal to others 
From the difficulties of living with being different 

You can't have missed the recent news that the new non invasive pre-natal test (NIPT) for detecting Down's Syndrome (as well as other chromosomal abnormalities) is to be introduced into the current NHS screening programme.  It has been available privately and at a price for some time now, but is soon to be offered to any woman with a greater than 1 in 150 chance of having a child with a chromosomal problem following the results of current testing procedures (Nuchal Translucency scan and triple blood test). I am sure we will see its use becoming more widespread in the next few years, potentially being offered to every expectant mother over time. The simple blood test can be performed earlier in the pregnancy and provides more accurate results than other tests currently available.  It will reduce the need for invasive screening measures, such as CVS/amniocentesis as there is a miscarriage risk associated with these procedures.  There is also the cost savings for the NHS related to doing fewer invasive procedures. All good so far.   

The issue for me and many others, is with how the information these new tests provide will be used. It is also a question of ethics and whether this test borders on a modern day eugenics, last seen in practice in Nazi Germany.  A world without Down's Syndrome may not be far away.  And, unfortunately, the media, medics and scientists would have the world believe that this is something to strive for. That this 'debilitating' 'disease', a 'burden on society', that people 'suffer' with will be once and for all eradicated. 

And this makes me desperately sad.  Sad that Ella's life is deemed to be of less value than others, that people think she suffers or that we suffer for having her in our lives. Sad that they may look at her and see a burden and sad that society doesn't value difference, diversity or appreciate what people with Down's Syndrome bring to their families, schools, communities and to the world. And what message is society sending to those with Down's Syndrome, who read the papers and watch the news themselves? 

The medical profession holds all the power in this situation, turning a women's right to choice into a decision they are so often rail-roaded into following incorrect, out of date and negative information and advice. There needs to be a change of approach and better education for medical professionals dealing with pregnant women undergoing screening. I am pro-choice but recognise that women need to be given accurate, unbiased information in order to fully understand the choice they are making - and that is unfortunately not happening now. In the UK a reported 92% of pregnancies where the baby is confirmed to have Downs Syndrome end in termination (693 terminations in 2014). In other countries, Denmark has reported it may become one of the first populations without a person with Down's Syndrome 'in the not too distant future'. This is most likely due to its >90% uptake of pre-natal screening. In 2012, Iceland had already not had a baby born with DS for two years, again due to prenatal screening uptake rates. 

Most shocking of all is this. In UK law, the cut off for abortion is 24 weeks. If the baby is found to have a 'severe handicap' then it is legal to terminate the pregnancy up to 40weeks, something I've only recently learnt (in Holland this extends to after birth under the Groningen Protocol).  Reasons for these late abortions have included cleft lip, club foot as well as Down's Syndrome.  Not exactly conditions that are incompatible with life. In 2014 12 late term abortions took place due to the baby having DS. 

I don't even want to contemplate how or why this happens but along with thousands of others signing a change.org petition, I'd like to see a change in the law regarding late abortions. I have signed because I believe babies with Down's syndrome should have the same right to life as others. 

I would be very grateful if you could take a couple of minutes to sign the petition yourself - you can do so here


There is also an international petition that you can read more about and sign here:



And here is Ella, still snuggled with her daddy (and her little sister) just this week. Still protected, still loved and thankfully oblivious to both the existence and impact of her one extra chromosome.  

All our lives will always be better for having her in them xx







Thursday, 7 January 2016

The year that was - 2015

I always enjoy writing these end of year posts on the blog.  What we've done, where we've been, who we've met and what we have learnt. It's always lovely to be able to look back and see where the year has taken us.  For me, 2015 has not been easy - from keeping things going as a solo parent while Ian was working away to making some difficult decisions about how best to make the work/life balance work for our family as we move into 2016.  There have been some good times too, weekends away with Ian and with friends and a trip to Wales with old school pals and our growing brood of offspring!

Ian finished his year working away in August and is now back working locally.  We all love having him home and seeing more of him even though I know he misses the air ambulance (don't feel too sorry for him though, he's managing to fit in some regular locum shifts to keep his hand in!).   

Ella has grown a lot in many areas this year - most noticeably going from being a pre-schooler to starting in reception at our local primary school, but more of that later.  She still makes me beam with pride everyday and has developed a real cheeky streak this year.

Lucy has also changed massively from tiddly toddler at the beginning of the year and has become a very articulate and confident little girl who all of us dote on.  

January




February
In February, we celebrated heart awareness week again by wearing red and donating to the British Heart Foundation. 



March - we yet again donned our odd socks for DS awareness day on the 21st and once again thank everyone who also took part and donated their lovely pennies!





April



May

I attended the Blog-on conference in Manchester. Lovely to have such an awesome blogging event on the doorstep as so many of them are further afield. There was lots to learn and get involved with whether you're a blogging pro or a mere beginner/novice like me. I've already signed up to go this year (won my entry ticket in last years raffle!). 

We quietly celebrated Ella's 4th heart-day with a heart shaped cake (and a little candle) and lots of thankfulness, while thinking of those little ones who are going through their surgery or have it yet to come.  

This year we celebrated whilst eagerly awaiting news from my brother that a new little person had finally arrived. The little man who made me an aunt and gave the girls the new title of cousin (!) arrived later that evening.  A day of multiple celebrations from now on!...  


June


At Ella's eye exam it was decided she did need glasses (always a given due to the fact Ian and I both wear them, it was just a case of when). Getting them before the summer meant we had a good couple of months to get her used to them before she started school where it would be most important that she was able to see everything in order to learn and to enhance her fine and gross motor skills too. She wasn't sure about them at first and would take them off a lot but with persistence and the fact that they do help her see better she was soon wearing them for long stretches before she started at school. She still regards them very much as a part of her school uniform and they soon get taken off when she gets home at the end of the day! 


July




We went on a special trip to see The Take of Mr Tumble which was on as part of the Manchester International Festival. We finally got to meet Florence and her mum Rachel (you can read all about it here). A special day for us all.


August



Ella and I had some lovely day trips together during August while she was on summer holidays and Lucy was at nursery. It was lovely to spend some quality time with her and be able to give her my full attention. We went to the Museum of Transport, Crosby Beach, the Lowry, soft play and spent lots of time in the garden.


September


I know you already know this but Ella started school! A long time in the planning and there were lots of things to consider but 3 months on, I am sure she is in the right place. She is happy and that was all I wanted for her. Her speech has come on so much and her love of drawing and being creative has been nurtured. She has talked a lot about school and her friends over the Christmas break, (Lois, Grace and Chloe got mentioned a lot!). 


October




We celebrated as a family at a lovely house in the Cotswolds for Granny Sarah's milestone birthday. Ella and Lucy absolutely love their baby cousin as you can see from the above photo! 

Ella really loves animals. We have two cats who she loves to pick up and hug (not sure they feel the same way!). She also loves meeting dogs when we go for walks or to the park and enjoys days at the local farm feeding the animals there. We went to the Viking festival in Stockport and Ella got the chance to hold an Owl called 'Fally'. Ella was very patient, still and quiet and followed the instructions she was given by the handler beautifully. She was very proud of herself as the picture shows.



November


5! How did she become 5??? She had a great birthday, soft play party at the weekend with her friends and then a family tea on the day itself. And just like last year she loved being the centre of attention, especially where singing, cake and candles were involved! 


December
A big month for me personally in that I swapped my nursing career for being a full time mum to Ella and Lucy. It was a difficult decision to make for lots of reasons but was definitely the right thing to do. We don't know how long my career break will be, but I am able to pick up bank shifts as needed to continue my professional registration and keep up my skills. It's been a real change in pace, choosing when to work and being able to work around Ian's rota instead of clashing or working complete opposites as we were before. So for us, 2016 = more family time, although less work doesn't seem to mean we are less busy! Everything just seems that little bit easier when there is one less ball to juggle.

This year we got the first visit from 'the kindness elves. The elves replaced an advent calendar in our house although they didn't visit everyday (need more time!). The kindness elves are a lovely and meaningful alternative to the elf on the shelf idea, started by Anna of the 'imagination tree' blog. The idea is that the elves will teach and reward kindness and make us think of others during the festive period. The elves did lots of fun activities with the girls - from making bird feeders to give as presents (and to feed the birds while it's cold), messy play, donating food to the foodbank and general festive fun. All with the idea of reminding the girls to be kind and ways they might be able to do this. It's an idea that can be adapted and can grow with them each year. Lucy already keeps asking when the elves will be back so I can see them becoming a part of their childhood Christmases. 






Here's to 2016 - more time for family, for fun, for blogging and maybe even more time for me...




Monday, 23 November 2015

Mummy

I was sorting through Ella's school book bag on Sunday evening, getting ready for the week ahead. In and amongst the parent governor nomination letter, her communication book and the many drawings she comes home with on a daily basis, I found this...


                        'Mummy'

It's nowhere near legible and she has obviously had help to copy the letters but it is her first attempt and I love it. I love that she tried, I love that it's for me and I love the promises it signifies for the future. 

This evening we opened her birthday presents from her party at the weekend. My plan was to just do a few each night this week as last year she would only stay interested in opening presents 2 or 3 at a time and needed help getting the paper off. 

Well, my plan was busted as she wanted to open them all and didn't want help, thank you very much! 

With each lovely and thoughtful present that was opened came a card. And in some of those cards, her friends had written their own names in their own hand and I felt a moment of sadness that Ella can't do that yet. 

Can't do it. Yet. 

But her picture has pride of place on the fridge door, a reminder that she will get there in her own time. 

 
 

Wednesday, 21 October 2015

A Pink Umbrella

Today was wet! And we can't complain too much as the weather has been quite dry of late. But I guess it's that time of year when the days are just going to get darker, colder and wetter.

After I'd dropped Lucy at nursery, Ella and I drove back towards home to drop her at school. As we neared the local secondary school, we could see all the pupils making their way there in the rain. 

Ella: 'Umbrella mummy'
Me: 'Yes, lots of umbrellas today Ella because of the rain' 
Ella: 'I need that one'
Me: 'What? You'd like an umbrella?'
Ella: 'yes, pink one'
Me: 'you'd like a pink umbrella?'
Ella: 'I love that one!' (Which is her new favourite phrase).

Well how could I refuse? For a child that has never once asked me for anything, if a pink umbrella is what she wants then...




She loves it - wet days will be much more fun from now on!

Friday, 25 September 2015

Ready for the School run...

Ella's been in school for 3 weeks now. She has settled well, is participating activities and learning along side her peers. She loves her teacher, giving her a big hug as a greeting each morning. 

She knows where her peg is and is getting better at hanging up her coat by herself. She can put her book bag in the correct box with some help and can find the correct basket for her water bottle to go in, again with prompting. These are all things that she does every day so the repetition is good for helping her to consolidate these tasks in her long term memory. I am confident she will be doing these three tasks independently before long.

I quickly realised that I needed to be more organised in terms of school uniform (she comes out so grubby that I'm washing every item she wears almost every day!), what Ella needs to take with her each day and remembering to return any forms or letters that need signing.

This starting school malarkey has been as much of a learning curve for me as it has been for Ella! 

I began thinking about what I could do to help me be more organised and more able to get everyone out of the door at 8.30am every morning. And there's also the days that I don't take her to school when Ian/the nanny/granny takes her. My method of organisation has to work for whoever is doing the school drop off and on whatever day of the week that may be. 

I also realised that being organised is about Ella. Therefore, in the long term it should also be something that works on her level too and benefits her in terms of her independence and her confidence in doing things for herself. 

And then I remembered a post I had seen on Facebook, a mum of 7 kids who had bought a set of plastic drawers for each of her children, that sat in her hallway. 5 drawers in each set, one drawer for every day of the week. Socks and pants for everyday are a given but then there's PE kits on different days, after school activities and other variables to factor in (I'm feeling marginally inadequate at this point that I'm struggling to organise one child, let alone 7!).

So I stole the plastic drawers idea and added a twist to make it more tailored to Ella, the way she learns (visually) and by linking it to something already in place at school. 

Our drawers are coloured, a different coloured drawer for each day of the week. 

At Charnwood (Ella's preschool), they associated a different colour with the different days of the week. And seeing as Bianca (the SEN teacher) has moved from Charnwood to Ella's primary school, they have adopted the concept too, for familiarity and continuity...


I've always known that Friday was 'blue' day as Ella always says 'Friday, blue day, granny' because granny always collects her on a Friday. Her favourite day!

So here is what I've done with our drawers... 

So, apart from Tuesday's drawer being the wrong colour, they're actually pretty close to the correct colours for the days of the week. A printer, laminator, a pair of scissors and some glue later and the days of the week are now on each drawer front... 

There's space on top to put her water bottle and glasses (which she will not wear once she's finished school for the day). I've currently added a bulldog clip as a makeshift hook for her book bag but will change this to something more Ella friendly soon...



We will see how it works in practice next week but hopefully being able to put a clean polo shirt, socks and pull-up into each drawer as a starting point for the week ahead has to be better than nothing! I will report back and let you know how they are working and how Ella benefits from them over time.

Happy weekend everyone (especially all those fellow parents who do the school run, enjoy your 'days off'!) xx

Monday, 21 September 2015

Proud Moments - {September 2015}

There's a lovely little thing that happens every month in the 'Future of Downs' Facebook group. 


We celebrate our children's milestones and share what's made us proud. We do this on the 21st to represent the three copies of chromosome 21 present in Down's syndrome.And there's no such thing as an achievement too small. 
There's a whole lot of love and pride bursting from the members every month - and quite rightly! 
Proud moments happen everyday.  I'll be sharing ours on the 21st of each month. 

As this is September, it seems only fitting that this month's proud moment is school related! 

Ella is now in her 3rd week of reception. She bounced in that first afternoon two weeks ago, headed straight for the sand tray and hasn't looked back. One week of afternoons and one full week later and she is doing great. She seems to have settled really well and is getting the help she needs when she needs it. 

She goes in looking mostly presentable most mornings and comes out at 3.15pm covered in mud, paint, glue and general grub - all signs that she's had a great day! 

Very proud of how she has adjusted to being at school and how well she is doing...


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 
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