Tuesday, 23 June 2015

Proud Moments - June 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. 

Earlier this month, we found out that Ella needs glasses. We've known she would end up with them one day as both Ian and I wear them. At her last eye appointment the decision was made to start her wearing them now so we've got some time to get her used to them before she starts school in September.  The glasses she's been prescribed are bi-focals which are recommended for children with Down's syndrome. She will take time to adjust to them and may be a little more clumsy while she gets used to wearing them.

I'm glad we have time for her to adjust to them as she's not exactly keen! She's wearing them little and often for now and hands them back after a few minutes with an added 'don't like it'! Nursery have been great at getting her to wear them too.

She looks super grown up and cute in them though and we will keep on going with them. I am sure by the time she starts school she will be wearing them most of the time.




In other news, her speech continues to improve and she's suddenly got her head around using you, me, yours and mine correctly. And both girls and Ian made me very proud at our friends wedding this last weekend. Ian was one of the best men and looked super smart in his Father's Day present (new suit!). And I had several lovely compliments on both girls from other wedding guests which was lovely to hear.
 
 
 

Sunday, 7 June 2015

Sliding Doors

These are my two babies at their 20 week scans...














Look very similar, don't they?

Both loved, wanted and unique.  However, one of them is deemed by medicine and society to be less worthy of life...

I've wanted to add my thoughts on the recent developments relating to the non-invasive pre-natal testing for Down's Syndrome.  I've just not been sure how.  There are so many well written blogs and articles on the subject and a lot of what I am thinking and feeling has already been said by somebody else.

A test that promises a 99% accuracy of detecting a chromosomal abnormality in an unborn baby with no risk of miscarriage. What's not to like about that?  

We all make decisions every single day of our lives.  What to eat for breakfast? What to watch on TV? Where to go on holiday?  On the surface, they are all small and insignificant choices we make without even thinking about it.  

But what if the next choice you make or decision you take changes your life? Choosing Marbella for your holiday instead of Rome and meeting the love of your life, choosing redundancy only to land your dream job weeks later.  There are also the choices we make or events that happen that we then don't have any control over. Missing your train or taking a wrong turn may lead you somewhere new or unexpected 

These defining events happen to all of us throughout our lives. It's usually with the benefit of hindsight that allows us to single out the choices we made or an event that led us to where we are and who we are today.  To look back and see in black and white that fork in the road - the path you chose versus the path you could have taken...

There was a decision I made, around this time 5 years ago.  I call it my 'Sliding Doors' moment. A decision I can now say altered the course of my life and our family's life. 


In a room with a midwife, about 12 weeks pregnant I was asked if I wanted the blood test that screened for Down's Syndrome.  I was 28, healthy and had no reason to think I was 'at risk' of having a baby with any problems - besides, Down's Syndrome happened to older women, right?  

I politely declined the test and didn't really think any more about it.  At the time, the test was a stand alone option where I was having my ante-natal care.  The nuchal translucency test now used in conjunction with the blood test as standard was then only offered to women over the age of 35.  There was no discussion with the midwife, she didn't explain my 'risks' or give me any further information about the testing or about any of the chromosomal abnormalities the test would look for.  With hindsight if I had been given more information about the tests, I may have decided to have them.  

And with the results of those tests, I hand on heart do not know what I would have done.  

I am so grateful now that I never had that information before Ella was born.  It is well reported how women are not being given the information and advice they need to make an informed choice after receiving a positive diagnosis during pregnancy. Data suggests that a massive 92% of women who find out their unborn child has Down's Syndrome go on to abort their pregnancies.  

A lot of the blame for this lies with the medical professionals who are 'caring' for these women and some of the blame with the way society as a whole views and portrays disability. So much more should be being done to educate staff, challenge current views and change the culture within the NHS towards women given a high risk screening result or a positive amnio/CVS result for Down's Syndrome.  There is a lack of understanding of what Down's Syndrome is, negative and false information being offered to women and very little information given as to where they can gain more support or advice in order to make an informed choice.   I also know parents who have been given a positive amnio result and been offered a slot for termination in the same sentence. 

From a purely selfish viewpoint, I am glad these more accurate, non-invasive tests have been developed.  After having Ella we were told our chance of having another child with a chromosomal abnormality was 1:100 (about ten times higher for another woman my age).  

I knew any decision I would  have to make in the future regarding pre-natal testing would be based upon how I felt at that time.  When I found myself pregnant with Lucy, I knew that I had to know one way or the other so I could feel more at ease during my pregnancy and know what to expect. I had the triple test which came back as 1:330 so decided to have an amniocentesis - with all the worry and guilt that carried with it.  It was an awful period of time and one that, thanks to these new tests I won't have to put myself or Ian through again. 

For women in my position, the development of these tests means we no longer have to put our unborn child at risk to get a definitive result. 

A small silver lining to the black storm cloud these tests have created. 





Monday, 1 June 2015

The 'Magic'

A couple of years ago, I nursed a lovely old lady. I'd not met her before and while helping her to have a wash, we got talking about her and her family. She told me about her husband, their two grown up sons and that her oldest son was born with Downs Syndrome. 

We talked a bit more and she asked me if I had any children. I told her I had a little girl called Ella who was two and that she too has Down's syndrome.

I'll never forget her reply, she took my hand, looked at me with a big smile and without hesitation said one word...

'Magic'.

I knew exactly what she meant, but I couldn't even begin to try and define or explain it to you. It comes from a shared experience, an unspoken bond. A complete understanding without the need for words or explanations.
 
I met her son on several occasions during her stay with us and was inspired by their story - so many children with disabilities born in his generation were hidden away or given up at birth by their parents because that's what they were told to do. This family had never seen that as an option and their eldest son had been loved and raised by them and given the same opportunities as his younger brother.  The lady died some time later in a hospice but I still think of her and her family often and wonder how her son is getting on.

I Wish there was some way I could bottle up and sell the magic that is having Ella in our lives. So everyone had the opportunity to experience it.

There'd be a disclaimer though... With that magic, comes emotional, physical and mental turmoil on a daily basis! Well, not all the time but we've certainly had a challenging time of late.

She's pushed me to my limits over the last few weeks - frustrated me with her defiance/reluctance to do things, worried me when she was ill and she's constantly wanting my attention or supervision - I hear 'mummy' around 243,000 times a day. And night. Our sleep is disrupted and she often ends up in bed with me in the early hours. 

When she's challenging me, It makes me feel I'm not doing enough for her. My overriding fear is that I'm failing her - by not spending enough time with her, by going to work, by having to divide my attention between her and her little sister, both with different needs and expectations of me. And a million and one other reasons too. 

And then in and amongst the frustrations, tears (mostly mine) and chaos come those little moments of magic - an unexpected hug, her smile, a new word, singing 'Let it Go' with her sister in the back of the car, trying to ride her scooter...
 or just a selfie with mummy xx

Monday, 20 April 2015

The language of life

I often wish I could get inside Ella's head...  


I wonder what the world is like from her perspective, what she sees, how she thinks and how she feels.  

I've had a challenging time with her recently - she's been hard to please with every question I ask answered with a defiant 'No!' She's also been getting easily frustrated which comes across as loud shouts or tears.  And I don't know what the matter is because she doesn't have the expressive language to tell me.     

It's only since having Lucy that I realise what we miss out on knowing about Ella and her experience of life.  Not yet two, Lucy gives us a running commentary on her day from the minute she wakes up to the minute she goes to sleep at night. How she feels, what she can see, what she's doing, what she's done, what she's going to do etc.  She can tell me what she's bumped when she's crying or a story about 'daddy and Ella and Lucy and mummy and granny and Elmo cat go bounce on the trampoline!'.  

I know what Lucy finds funny, because she tells me and I know all her little quirks because she announces them like royal decrees... 
'Lulu don't want a blanket' - she won't sleep with any covers on after decreeing one evening that 'don't want sleeping bag mummy' and that 'Lucy have pillow in cot now'
'Lulu have 2 dummies' - she now has to have two dummies on her person at all times (when I asked why she replied 'that's better')

Lucy's 'birthday cake' complete with candles
Ella is a brilliant communicator, don't get me wrong.  Despite all the challenges she faces she talks, signs and can tell me most of her wants and needs.  She can follow basic instruction, put a simple sentence together but as has always been the case, she understands far more than she can verbally communicate which I think is where her current frustrations are coming from.  She struggles socially to engage with other children as their spoken language and ability to communicate with one another means she often gets left behind. 

Having Lucy around is helping with this and Ian (who is away a lot) notices the improvements in Ella's speech every time he is home so I know she is improving all the time. I am aware that her speech is already good. As it continues to steadily improve it will bring along with it other areas of her development like her social skills, her ability to express herself and hopefully diminish the frustrations she is having at the moment.


Just this evening Ella said 'What do we have here?' when I put her plate in front of her at teatime (I did laugh - and it was shepherds pie if you're wondering!). That's a 5 word sentence said correctly in context but one I know she has heard somewhere and is copying as a full phrase and not as separate words (she is only putting a maximum of 3-4 words together at the moment).    

For now, I'll have to carry on wondering what goes on in that defiant, beautiful, determined head of hers.  


Some day soon, I'm sure she will be telling me herself xx








Friday, 17 April 2015

School and the EHCP

As with a lot of families across the country, this week we received our offer of a place at Primary School for Ella.  We did our research and ended up choosing our local, mainstream school that we live in the catchment area for.  We liked the staff, the atmosphere and the size of the school - not too big that Ella could be 'lost' among her peers and somewhere we feel she will be able to flourish given the support she needs.  They also have a child with Down's Syndrome in reception at the moment which helped us in our decision.    It's the school we would have chosen to send our children to, whatever their needs and will also be where we want Lucy to go when it's her turn for school in a couple of years time.  Being that it was the one and only school we had applied for I am really pleased that she has been offered a place there *big sigh of relief*!

For a child with Special Educational Needs, being offered a place for your child at your preferred school is the easy bit.  We now have the hard work of reading the draft Education, Health and Care Plan (EHCP - which has replaced the old 'statement' of educational needs), ensuring it has all the information relevant to Ella, what her provision at school should be, who will provide it and when. Then we get the chance to amend the document and discuss it with a local 'Assessment and Review Officer' at a meeting yet to be arranged.  It's a lengthy document too so lots of homework for me to do.  I'm very aware that it's the most important document relating to Ella that I've ever had to read and act upon and that it has a massive bearing upon her education from September onwards.  

The EHCP is a legal document that came into force last September as a change initiated by The Children and Families Act (2014). All children currently with a Statement of Educational Needs are being changed over to this new document.  For children, such as Ella starting school this September they are the first ones to go through this new process from the beginning, so it's new to everyone involved.  On the whole, our experience so far has been pretty painless although I know the same can't be said for all families going through this process at the moment. I think we have Ella's current nursery to thank for the smooth process - they have been very proactive at each stage and already have a good working knowledge of the new documentation despite it being so recently introduced.  The process seems to differ so much depending upon where you live, where your child is currently placed and whether you have access to other agencies to help with the process or getting your head around the enormity of it all.  

I can personally recommend IPSEA (Independent Parent Special Education Advice), speaking with the SENCO (Special Education Needs Co-Ordinator) at your chosen school or contacting independent supporters (agencies there to provide advice and support to parents through the EHCP process) if you need more help and support with understanding the process or help reading and amending the document to ensure it has everything you think it needs to have in it.

Everyone involved in a child's care has the opportunity to contribute to the EHCP document. For Ella, this has included her paediatrician, speech therapist, educational psychologist, sensory support service and her current nursery.  They have provided their input so that all her health and learning needs can be identified and provision can be put in place to allow Ella to meet her potential through the outcomes stated in the plan.  

It's not just the professionals that have the chance to input to the EHCP.  At the front of the document is a 'one page profile' where us as parents get the chance to express who Ella is, what is important to her, her likes and dislikes and what she enjoys and what we feel her needs are.  

Once she is old enough to do this herself, it will be her 'voice' that opens the document. For now, the job of sharing Ella's character, advocating for her needs and conveying how amazingly fabulous she is with people that don't know her comes down to Ian and I (her nursery teacher also added her observations and knowledge of Ella here too which importantly added another dimension as to how others see her and what they perceive her needs to be). Quite a responsibility and one I hope we have got right as it forms the cornerstone of what her needs are and therefore what her help and support will be.  Here are some of the statements from her one page profile to give you an idea...
  • Eager to Learn
  • Being independent is important to Ella - she knows her own mind
  • Caring big sister
  • Family is important to Ella
  • Having things modelled to her so she can learn
  • Important to keep Ella safe as she is vulnerable
  • loves messy play
  • Enjoys being outside  
  • Understands more than she can say, so she sometimes gets frustrated

Ella is of course oblivious to everything that is going on.  We will start to prepare her for her new school over the next couple of months with some organised visits so she knows the building and can meet her teacher and other people who will be involved in her life at her new school.  Luckily, her friend Daniel who also has Down's Syndrome has also been offered a place at the same school so that's one face she'll definitely know!

One of my worries when we were told Ella had Down's Syndrome was that she wouldn't be able to go to a 'normal' school.  My inexperience and preconceptions meant I wasn't aware that most children with DS are taught in mainstream schools, that they have access to the same opportunities as other children and are valued, included and supported to reach their potential - whatever that may be.   

I am excited and proud of her at the start of her school journey. There is so much she will do and learn and I can't wait to watch her develop and grow over the years to come.  

And just by being there, she and Daniel will teach too. Teach the value of inclusion, patience, understanding, and acceptance.  




School Ella Bean??! Stop growing up so fast please xx






Saturday, 21 March 2015

Proud moments - {March 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. 

This week marks the yearly Down's Syndrome Awareness week and today 21/3 is DS Awareness Day across the globe.  And this year the support has been amazing.  From friends and family, our local community, nationally and internationally the bar has been raised and the goal to raise awareness and celebrate this wonderful global community has been surpassed.  From nation to nation, some of the best known landmarks have embraced the day, illuminating in the colours chosen to represent Downs Syndrome - blue and yellow.  It's an impressive list that includes The Empire State Building, CN Tower Canada, Millenium Bridge Gateshead and Blackpool Tower.  Maybe next year, the list will be longer!...

Empire State Building, NYC


I wanted to lend my support to awareness week this year, but wasn't sure how.  Then a little incident in the supermarket got me thinking and I wanted to show that people with Down's Syndrome - or any disability - are a person first.  They have likes, dislikes, strengths, character, personality, feelings and they make a positive contribution to their local communities and to society as a whole.  Person first language is very important and I desperately want people to see Ella as a little girl, a sister, daughter, friend, mischief-maker, bookworm, the list is endless - she is a million and one things before she is a child with a disability.  A diagnosis, whatever that may be does not define who someone is or what they are able to do.  

My way of lending support was to share a little of who Ella is.  In the days leading up to March 21st I shared a photo a day on the blogs facebook page. 

This is where it started...   
'So this happened last week...
In the supermarket, 
Ella and Lucy in the trolley.
A hand on my arm
Head tilted
'They're so happy and loving aren't they?'
Then she was gone.
The lady was very well meaning, I get that, but she saw Ella and immediately put her in a box. She made assumptions based on her experience and understanding and it made me sad. Sad that she never asked Ella's name and that she referred to her as 'they'.
I firstly wanted to invite her round at bedtime/teatime/anytime things aren't going Ella's way - because like every other child she has a whole range of emotions that she cycles through on a daily basis. She is not just stuck permanently on 'happy'.
Down's syndrome is and always will be a big part of who Ella is. But I have always been determined that Down's syndrome will not define who she is.
She is a million and one things before she is a child with Down's syndrome and I will share some of them with you'...
 
Ella loves being helpful (most of the time!). Tidying her toys, telling me which clothes belong to who when folding the washing, bringing me wipes and nappies when Lucy's nappy needs changing and I recently found she can turn our tumble dryer on too (not so helpful when it's empty but she was still very proud of herself!). Here she is helping water the plants in granny's garden xx ‪#‎downsyndrome‬ ‪#‎WDSD15‬ ‪#‎adifferentview‬‪#‎TeamT21‬

Ella loves to explore new places. She especially enjoys being outdoors - here she is searching for a Gruffalo...

Just before Lucy was born, I wrote a letter to Ella which included these lines:
"...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...
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..."
Ella. A sister and a role model. Lucy is most certainly learning from her big sisters determined/stubborn ways and her cheekiness!
To read the full letter, visit:

We've read books to Ella since she was about 4 months old. We still do a book every night before bed and it's still one of my favourite times of the day. Her favourites at the moment include 'Wendy the wide mouthed frog', The Tale of Peter Rabbit, a find the item picture book or her book about nature and the seasons. All children learn so much from books and reading is something I've always enjoyed from being a small child. It's lovely to share stories and books, both new and old with both my girls. Even better that they enjoy them and will quietly entertain themselves with a story (now and again!).
‪#‎WDSD15‬ ‪#‎downssyndrome‬ ‪#‎adifferentview‬ ‪#‎TeamT21‬

People who have Down's syndrome are visual learners. That is why Makaton sign language is so effective - it provides a visual component for learning words, language and communication. It's also true that Ella learns by doing (as do I) and she loves activities such as play dough, baking, sticking, cutting and drawing. For Ella, drawing is a particular favourite - so much so that I need a bag to take home all her creations at the end of her day at nursery!
‪#‎WDSD15‬ ‪#‎adifferentview‬ ‪#‎downsyndrome‬ ‪#‎TeamT21‬

At a visit to a local farm a few weeks ago they had a man visiting with his big snakes, reptiles and spiders. In a room full of adults and children older than her who all refused to have a go, Ella held the tarantula twice, saying 'spider, tickly'. Big thanks to my brother whose holding her - he hates spiders! ‪#‎WDSD15‬ ‪#‎adifferentview‬ ‪#‎TeamT21‬

3 days to go! Hope you've got your odd/silly/lots of socks ready...
Here's our little miss independent...

Almost half of all baby's born with Down's Syndrome have an associated heart defect.
Ella was born with a large ventricular septal defect (VSD) and also had a hole after her fetal circulation didn't close properly after birth called a Patent Ductus Arteriosus.
Both her holes were successfully closed when she was 5 months old at Alder Hey. She remains under the cardiology team at Royal Manchester Children's Hospital and is now having check ups every 18 months.
Handing her over for surgery was the hardest thing we've had to do as parents. She was in hospital for 8 days in total and was discharged just 6 days post surgery. We had a lot of feeding problems before her op and although these weren't magically fixed overnight, we saw an immediate difference in her alertness, her energy levels and her development after her surgery.
                                                     She was a true trouper and she's never looked back...

No introduction needed for today's picture. We are lucky to have two beautiful little ladies who make us laugh and smile everyday.


 Happy World Down's Syndrome Awareness Day 2015! 
Last year during DS awareness week, Ella was featured in the 'Lose the Label' campaign. Stressing the importance of person first language and seeing the person and personality behind a diagnosis, whatever that may be.
I am creative, independent, adventurous, a fighter, determined, bookworm, beautiful, feisty, a sister, daughter, friend, helper, love chocolate, hate having my hair brushed, love jumping, dancer, Mr Tumble addict, learner, funny, lovable, whirlwind.

Happy World Down's Syndrome Day!  I've once again loved the odd sock pictures that have been shared by friends, family and even strangers.  It's such a good feeling to belong to something special, there's a real sense of global community this year which I'm proud to be a part of today and everyday. Wherever you've turned on social media, someone somewhere is sharing, talking about, celebrating Down's Syndrome and wearing the obligatory odd socks, of course! 























Friday, 20 February 2015

{Proud Moments} - February 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. 

We've talked about Ella and Lucy sharing a room since before Lucy was even born. The question has always been when will it be the right time??...  Well I finally realised that there probably was never going to be a 'right time' and that it should just be done and we'll see what happens once the change has been made.  

So, with it being half term and me being off work for the week (sleep disturbance less of an issue when I don't have to work!) I made the snap decision to just do it. So, Monday morning I moved Ella's bed into her little sisters room before I could talk/think myself out of it.  I talked it through with Ella first, then she 'helped' me to move her bed, mattress, duvet and all her things down the hallway into her new shared room.  Lots of talking about sharing, signing and reassurance along the way.  Once we had everything set up, she immediately climbed into her bed and asked me to turn the 'light off' (at 10am) which was more than reassuring.  Lucy was taking an interest in proceedings too and was mainly busy twirling round in circles giggling to herself - which I took to be a sign of her approval at her sisters sudden arrival in her room.


Having never done this before, I wasn't sure how to play bedtime... Put them to bed at the same time or follow the normal routine of Lucy first, then Ella about half an hour later?  As it happened, Lucy was still awake at Ella's bedtime but Ella was tired so I put them both in together.  Big fail... Lucy just stood at the end of her cot peering over at Ella in her bed - lots of 'Hallo Ella', squeals and giggles from both of them - not very conducive to a successful bedtime ending in sleep. They are both so good at going to bed and going to sleep, the last thing I wanted to do was create more problems.  So Monday night Ella ended up going to sleep in my bed and I moved her once they were both asleep.  Tuesday onwards bedtime has remained the same as always and there have been no further problems. Ella has been really understanding and super quiet when I take her into her bed after doing her book in my room.  

The other worry I had was would Ella wake Lucy when she gets up in the night? Ella wakes pretty much every night and pads along the hallway to my room, cat and snuggle tucked under her arm.  If I'm working the next day I take her back to her bed so my alarm wont disturb her in the morning but if I don't have to go to work and with Ian being away I generally just snuggle her in with me.  Lucy's had a night time cough this week too (she always gets one when she's teething) so she has ended up in with me a couple of times too - between them both they've probably shared their sleep more with me than each other so far, which wasn't quite the aim! 



I am really proud of how well they (and semi-single parent me!) have adapted to this change.  Lucy has taken it all in her stride and Ella has been really grown up about it all and very quiet when she knows Lucy is asleep.  So far, so good and part of me wishes we had done it sooner.


Now I have to decide what to do with Ella's old room - you know we love a project so watch this space!


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