Monday, 23 November 2015


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...


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 

Monday, 24 August 2015

We Three Teds

'Three teds (Dotty the Cat, Olive the Lion and Frank the Monkey)  travelling the world visiting real families who want to share their lives - each is lucky to love a person with Down Syndrome'...

Our visit from Dotty the Cat coincided with a visit from some special friends…

Having Ella and her extra chromosome has always meant we have met some very special people that we wouldn’t otherwise have in our lives.  When Future of Down’s was first set up in 2011, there was no facebook page, just an online forum where parents and families could go to discuss anything and everything.  

It was during the first few weeks of being on the forum and reading posts that I came to read Rachel’s story.  And it was so very similar to mine.  Her daughter Florence was born six days before my daughter Ella.  Both had cardiac defects and feeding problems and both our girls were PEG fed.  I can’t tell you how wonderful it felt to have ‘met’ someone else who was going through what we were.

Fastforward to today and we have helped each other through uncertain times, surgeries, feeding issues and hospital admissions.  We send birthday presents and Christmas cards and the facebook message between us is 4 years old and could quite easily be turned into a novel! It’s been a running joke for a while that we would have to meet before our little ladies started school.  

So finally, this July (just 6 weeks before school starts) we managed it!

My mum bought us tickets to go and see ‘The tale of Mr Tumble’ in the Manchester International Festival as part of our Christmas present.  Rachel managed to get tickets not only for the same performance but also bagged the seats next to us.  She and Florence arrived at our house on the Satruday afternoon, stayed over and then we headed into Manchester on the tram to watch the Sunday morning performance.  

A thoroughly lovely weekend and so special to meet someone in the flesh after being friends for 4 years.  And lovely that we had a Ted to share it with too.

And Rachel, thank you for a lovely weekend and for all your words of encouragement and support over the last four years, lets not leave it so long til next time! Xxx

Sunday, 2 August 2015

Runner bean

Ella very much lives for the moment...

I love that about her, but it does bring with it certain challenges.  And this is in no way meant to be a negative post, just an honest one.

I am finding it increasingly difficult to go out with both the girls on my own.  Ella can be unpredictable, refuse to walk or just want to be carried - all of these scenarios are arduous due to her age and size and not at all easy when you've only got one pair of hands and a toddler in tow too.

When she does walk, it can also be difficult.  She will sit down if she's tired or sees something on the floor that's caught her eye that she wants to play with, or just because she wants to.  Or, she will just point blank refuse to move.  If she's run on ahead, all I see is every potential danger in the environment around us - she's really fast if she decides to change direction or go somewhere she shouldn't (and all with no warning).  A gap in the hedge along the path, steep edges, steps, streams/water in general, other people.  I just can't seem to switch off and enjoy a day out - I'm always on my guard anticipating all the possible dangers and at the moment just the mere thought of a day out can make me stressed and anxious.  I know it's going to be hard work. I feel I have to be her eyes and ears, anticipate the consequences of her actions, keep her safe and a lot of the time I end up being her legs too (my poor back!).

We've had one incident where we were sat outside a cafe with friends, on a busy street.  Ella was sat on her chair, drinking her hot chocolate and all of a sudden, in a split second got off her chair and ran. No warning, no hesitation.  Ian ran straight after her and luckily for whatever reason she ran down the pavement instead of straight into the road.  It's the 'what if's' that stay with me from that day, not what did happen.  She was ok but we had no idea how to tell her what she did was wrong and she couldn't tell us why she did it.

I still can't get over how quick she can be.  When she decides to change direction, run off the wrong way or back the way we've just come it all happens in a micro second and has several consequences.  I a) have to leave Lucy and ask her to stay put as I run after Ella (which thankfully, most of the time she does) b) we probably cover twice as much ground as we would have if Ella had stayed on track so c) running/walking further than necessary makes Ella tired, less likely to finish said walk and so ends up being carried or in the buggy meaning poor tired Lucy has to walk/go on the buggyboard.

And I am aware that I place a lot of responsibility on Lucy as a (just) 2 year old.  I see that her experience of days out are sometimes limited by her sister. Lucy sees me get cross/upset with Ella or a situation, she gets less attention if I'm on my own with them as Ella needs more or ends up relegated to the buggy so I know she is safe if I have to sort out Ella.  We also end up cutting days short as I end up physically and emotionally exhausted if Ella is being a monkey.

We recently went to visit Ian's work.  Both girls got dressed up in their flight suits, daddy in his and we ventured up onto the helipad of The Royal London Hospital to see the helicopter.  It was a sunny, clear but unfortunately very windy day and as soon as we were on the exposed helipad, Ella went into meltdown and kept asking to go home.  She didn't want to sit in the helicopter, be with daddy, speak to the firemen.  She was upset and didn't like it. She just didn't want to be there.  I had to retreat with her down the exit ramp while Lucy enjoyed sitting in the helicopter.  I couldn't settle her or calm her so we all went inside.  Once calmed down and with a snack I was talking to both girls - 'it was too much for you up there wasn't it Ella, you didn't like it did you?' at which point Lucy pipes up with a pouty face 'I liked it'.  She was very aware that we'd had to come in because of Ella and it was then that I realised she understands a lot more than we give her credit for.  She had a great time charming the firemen, being a helicopter pilot and I'm sure there would be a job for her in  a few years if she wanted one!  We both felt guilty for her, but I was happy she had got some time to enjoy the helicopter even if it was cut short.

For the rest of the time in London which included walking on busy pavements, standing patiently in a queue, a boat ride and negotiating the tube Ella was fantastic.  She listened, walked fairly well when she had to and was careful and safe on the stairs/escalators on the tube.  It also helped that Ian was there as physical and emotional help - it makes a huge difference.  I know Ella can walk well, follow instructions, you just never know when she will do it (and sod's law will dictate that she will be mostly well behaved when daddy/another adult is along to help)!

Don't get me wrong, the odd day out with both girls by myself I could probably manage.  But I'm tired - physically, mentally and emotionally.  Ian has been working away for a year now and finally comes home for good next week (yay!).  He's been home every 7-10 days on average and not home for long stretches very often.  I've had a year of being pretty much a single parent - I don't know how people do it full-time, you have my complete admiration.  The last year has taken a lot out of me.

The relief of getting to work (and on time) for every 7.30 am handover over the last year has been immense.  As someone in the room would say 'I'm tired this morning' I'd think you're tired?! I've been up since 5.30am, got two small children up, dressed and out of the house for 6.50am - I've done a days work already.  And then I'll work my shift, go home and do it all again before bedtime. And the same again tomorrow. I've felt like I've been on a roller coaster that you're not allowed to get off and that never stops.  My coping mechanisms have been stretched to their limits and my anxiety has gone into over drive - hence my over thinking every little thing and getting stressed so easily.  I can't say this past year has been much fun from my perspective but I know it has been worth it for Ian which I can live with  (I'm cashing in my year away from home when we have two hormonal teenage girls in the house ;-) ).  We now have the task of adjusting to life together again and giving the girls more predictability, routine and stability.  All needed, as Ella is due to start Primary school in a few weeks time.  The next chapter is about to begin.  Until then, I'm looking forward to my days with just Ella when Lucy is at nursery = days I can plan that I know she will enjoy and that I will manage too. Sorry for the long post, hope that explains some of my hesitation or declining of days out recently. Thank you to those who have helped me out on days out too xx

Photo credit ~ Laura Limer

 Happy summer everyone. More posts soon on the end of nursery, special friends and Mr Tumble xx

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...


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

This post was subsequently published on special needs site 'The Mighty' and can be read here

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! 

Related Posts Plugin for WordPress, Blogger...