Showing posts with label Milestone. Show all posts
Showing posts with label Milestone. Show all posts

Monday, 17 October 2016

Superstar

I'm still getting used to the double drop off and pick ups on the school run, with Ella and Lucy being at different places for this school year.  

Wednesday to Friday, Lucy is in pre-school which means I drop off and pick up Ella first and then make the 5 minute car journey to Lucy's nursery to drop her off or pick her up.  

The mornings are generally fine, as Ella has to be in school for 8.55am at the latest and then Lucy's drop off is 9-9.15am which gives me plenty of time to drop them both off without rushing or worrying either will be late.  

Pick-ups are a little different as Ella finishes at 3.15pm and then I have to get to Lucy's nursery by 3,30pm.  This is doable as I park close to the school gates and the nursery is only a short drive, but it does rely on Ella coming out of school promptly and being one of the first to leave the classroom (then not making any of her famous detours before we reach the car).  Her classroom door opens straight onto the playground which does speed the process up a lot. I've also found that leaving her after school snack in the car means she has an incentive to get there quicker too!

I had no need to worry about any of this last Friday.  As the classroom door opened, Ella was the first child out of the door - and for good reason.  She was clutching the 'Star of The Week' certificate proudly to her chest.  As she saw me, she stopped and announced to myself and other awaiting parents 

' Ella is a Superstar'


Says it all really.  She received the certificate for 'fantastic number work' (tracing numbers and linking number to quantity when I asked her teacher for specifics!which is lovely because unlike her phonics/letters and writing she struggles with numbers and maths (just like her mum).  Maths is a much more abstract concept for a visual learner than reading and writing is which makes it a harder skill to master.

She's definitely a lot less confident with her numbers - she can count to ten on a good day but is very inconsistent, can miss numbers out or get them the wrong way round. She can also count 'how many', but often has trouble recognising her numbers and we are still a long way off doing sums. But, she is working hard even though she doesn't find it easy which is all we can ask for.  We have her EHCP review this week and maths will be one of the many aspects of school life to discuss. We will be setting targets for Ella to achieve throughout this school year and how she can meet those targets.  

I am no expert and realise that every child is different and what works for Ella may not work for others but wanted to share some of the things that we have been using to help her improve her maths skills and understanding at home.  

Numicon

We bought our own Numicon set when Ella started using it at pre-school.  It's a brilliant visual and physical way for teaching children with DS to count using shapes, patterns, colours and they can count using the coloured pegs or by counting the holes in each shape. The number shapes also fit together so adding numbers produces a shape or pattern - for example instead of imagining what 4+3 equals, the sums can physically be done by the child using the number 3 shape and the number 4 shape.  This multi-sensory approach really consolidates the learning taking place and is also allowing a learn by doing approach too.  

Mathletics 
 
We've just started using mathletics now she is in year 1. Mathletics is an interactive virtual learning platform that links in with the taught curriculum.  The tasks/activities Ella needs to do are set by school and we log on to her specific learning profile to work through them.  This again is a very visual approach to number work and as we access it via an app on the Ipad, it becomes more of a game than a school related activity and is therefore more appealing to Ella.  

Anywhere and everywhere
 
Around the house and when out and about we do lots of counting. I try and bring it into everything - playing games, reading books 'how many ducks on the pond in this picture' or at the supermarket - 'can you put six carrots in the bag please Ella'.  I'm also pointing out lots of numbers on signs/buses/registration plates to get her practising recognising her numbers.  
As with all aspects of Ella's learning she needs lots and lots of repetition to consolidate new information and skills.  

I know she will get there and it doesn't matter when, we will just keep on going until she does.


Sunday, 4 September 2016

Potty Training a child with Down's Syndrome - our journey

Potty training is a rite of passage and a skill that most children conquer between the ages of 2 and 4 years of age.  And, just like every other life skill children have to master, some get the hang of the potty straight away and for others, like us (and for lots of different reasons) it takes a little more time, perseverance, patience and understanding (and a lot more floor cleaning, wet washing and 'never mind' moments!).

Our potty training journey began around 2.5 years ago when Ella was around 3.  With Lucy arriving a few months before and life beginning to settle down again, we decided to give it a try.  Having never potty trained a child before, the task of potty training a child with additional needs suddenly seemed very daunting to me. I had no idea where to start but decided giving her some no nappy time to see how she did and to introduce the potty were both good places to start. Things didn't go well, Ella didn't 'get it' and I decided to wait a while before having another go.  I was a little disappointed but knew that there was no point continuing if she wasn't ready.

We kept the potty around and I would sit her on it at bath time.  We had a couple of fluke wee's on the potty (cue lots of praise, clapping, singing and dancing from us!) but mostly she would sit there for ages then wee as soon as we put her in the bath.  I didn't push it any further during this time as knew she wasn't aware enough of her bodily functions and wasn't ready to try again.

When she was almost 4, she started pre-school and they were great with her.  They took her to the toilet at specific points in the day and when they changed her pull-up.  She became much more confident with the toileting process during this time.  She was able to put her own pull-up on (high five for independence!) and could follow the toileting trip with independently washing and drying her hands.  Looking back, I see I could have been better at following their lead and implementing a better toileting routine at home but for one reason and another, it never happened.

By now, Ella was in size 6 pull ups but was rapidly becoming too big for them.  I consulted our Health Visitor (HV), wanting some advice on how to approach potty training and also to find out if she could be referred to the local continence team.  She gave me a toileting diary to complete and said Ella could only be referred to the continence team based on what the diary showed or when she was 5 (free continence products in our area are only available to children 5 and over - it was 4 and over when we moved to the area but this has since changed to age 5 due to funding cuts). My mum (who is also a HV and has also had 3 children herself) was also a big source of advice and support for me too. 

It was also becoming more difficult to change Ella out and about. Changing tables in public toilets were now much too small for her and having to take shoes and trousers off to change a pull-up standing on a public toilet floor is neither hygienic or nice.  I'm a great fan of the 'changing places' toilets that provide space, bigger areas to change older children and adults and also provide hoist facilities for those that need it.  These toilets are becoming more common but are still few and far between - the one I used at children's museum Eureka was fab, clean and had lots of space. I stood Ella on the big changing table to get her changed rather than the floor (which although it looked spotless was still a toilet floor).  

Picture courtesy of Eureka website

You can search for your nearest Changing Places toilet here, before you head out and about - I am sure there will be many more of them about in the near future.  Such a much needed and cost effective resource that more companies should be providing these facilities for their customers.

My biggest issue was the pull-ups - Ella was soon too big for the size 6 supermarket bought products.  The only place to find a bigger size was online from a continence product manufacturer.  And they weren't cheap - tesco were around £4 for a pack of 34 pull ups and the size 7 packs of 16 pull ups came in at £5.90 each.  A big price difference!  We had no choice at that point than to buy the size 7 pull-ups as that was all that was available to us. You can see why there is pressure being put upon the major supermarket chains to produce nappies and pull-ups in bigger sizes at a more affordable price point. 

I was told by the HV that even once referred to our continence team, they only provide nappies and do not provide pull-ups any longer, again due to budget cuts. As Ella had outgrown the nappies, the options that would be available to us as a free product from them would be a size XS adult pull-up (which I could almost squeeze into so way too big for Ella) or net knickers with pads.  Whichever product you got free from the service you would only be provided with 4 per day.  

I had several issues with this:
  •  4 products a day is not enough when you want your child to be clean and dry (Ella had poor bladder control and was just constantly wet so I could change her 6-7+ times a day depending on how wet she was).  We were also battling with constant nappy rash due to her being wet all the time so I had to keep her as dry as possible.
  • Ella was able to put on her own pull-up and that had taken a lot of hard work - input from myself and her teachers at pre-school and also a lot of determination from Ella, who is very fiercely independent.  To then be told our option was a pad in a pair of net knickers was just not good enough - there was no way Ella would be able to do that by herself and all that hard work would be undone.  This was something the continence nurse just didn't 'get' when I eventually spoke to her when Ella was referred prior to starting school (and that conversation led me to get so frustrated that I haven't felt able to contact the service since).
  • I'm a nurse and have used net knickers and pads professionally with patients and know that they are not comfortable to wear, they are cumbersome (I wanted Ella to fit in with her peers as much as possible - wearing a pull-up is not ideal but having a bulging gusset just would not do). 
  • And in all this, I want to protect and uphold my daughters dignity.  There is nothing dignified about net knickers and a pad for an adult let alone for a child and definitely not for long term use.
In the end, I felt quite unsupported by our local service and our HV and wondered how on earth I was ever going to get Ella out of pull-ups.  My goal of having her potty trained before she started reception didn't happen although we had another try during the summer holidays of 2015.  I could see she was beginning to understand what the toilet/potty was for and she was able to tell us when she had done a poo (but not before).  All good signs that gave me hope she would one day be nappy free.

In February 2016 at half term, Lucy was 2 and 9 months and I decided it was time to try potty training her.  And at the same time I thought I could try Ella again - school had been keeping up the toileting process at specific points in the day.  She knew the process really well, we just needed to crack the control aspect and waiting until she was on the toilet/potty to do things. 

Lucy was more than ready and with just two accidents on the first day was dry day and night from then on. Ella still wasn't ready and obviously just didn't have an idea of bladder control although she was much more aware of doing a poo and doing them on the potty.

School (who have been amazing and have never put any pressure on myself or Ella for her to be continent) continued their input with taking her at various times during the day and then during the summer term, Ella suddenly started asking to go and became drier for longer. The reports at the end of the day that she had asked to go or had done something when they took her to the toilet were becoming more frequent.  

And now, at age 5 the size 7 pull-ups were getting too small - our only available option was the size 9 night time pull-up from the online supplier (they don't do a size 8 pull-up product and couldn't tell me why).  The size 9's also come in a pack of 4 but are £10 more expensive than the size 7 4-pack.  There are also 16 less products per 4 pack (size 9's come in packs of 14 and size 7's packs of 18).  The cost of buying them was becoming ridiculous.

So, with it being the summer holidays again, I had had it in my head for a while to give things another go.  And I don't know what made me choose this particular day but on a Thursday morning I got Ella dressed into knickers and told her 'no more pull-ups'.  I didn't know what to expect - to be honest I wasn't expecting to get any further than our previous attempts but knew we had the time to try again.  I was also feeling much more confident about the whole situation having now potty trained Lucy, although I know we were lucky with how well she picked it all up.  

Ella did really well with just a couple of accidents during the first day.  I could see she was beginning to understand the sensation of needing to have a wee and was having a fuller bladder as her control was better.  There were lots of chocolate buttons to keep things going but they had now turned into a reward rather than a bribe. I was better placed to know the signs of when she needed to go to help her as well.

I put her in a pull-up for bedtime but was astonished when she woke up the next morning completely dry and she did a big wee on the toilet (more chocolate buttons and a few happy tears from me).  We went to her cooking class the next morning (none of this staying in the house for a week malarkey!) and I did put her in a 'dry like me' pad just in case.  She was fine for the whole class but then had an accident at the end.  I subsequently found if she was wearing the absorbent pads she would wee instead of using the toilet so I ended up not using them again, although they were great during Lucy's early post potty training days.  I just took plenty of spare clothes everywhere with us along with the potty and had plenty of toilet trips when out and about.  There were, of course plenty of days where she wasn't as good and we had lots of accidents but on the whole she's got the hang of it all very well this time. 


She has now been dry day and night for 3 weeks.  So super proud of her and I am excited that she can go into Year 1 wearing knickers.  

I'm pleased we didn't rush things and although its taken 2.5 years from starting our potty training journey, she has got there in the end. As she always does.

I'll hopefully get around to writing some hints and tips for potty training that have helped us along the way soon. For now, I'm off to iron and label next weeks school uniforms!

Sunday, 21 August 2016

End of an era: Lucy leaves nursery

This was our last time ever through the big blue doors...


Five years ago, I carried Ella through these doors in her car seat as a little baby, when life was still so full of worry and uncertainty.  The staff embraced Ella and all her needs, just as they do every child who comes through those blue doors.  They mastered her feeding tube, went on SEN/Down's Syndrome specific courses and learnt Makaton, which they still use throughout the nursery today (two of the nursery nurses are now Makaton tutors).  

Three years after Ella started at the nursery, Lucy followed in her big sisters footsteps. For a while, it was lovely having them in the same place and being able to drop them off and pick them up together.  They were even able to spend some time together during the nursery day, despite being in different rooms.  

It felt like the end of an era when Ella left to go to pre-school two years ago. However, this week, the blue doors have closed on us for the last time as Lucy has now also left the nursery as she gets ready to start life as a pre-schooler.


Both our girls have come out of the nursery as confident, bright and happy young girls. Leaving an amazing place where they have both learnt to fly, cared for by an amazing team of staff who we cannot thank enough. 


Goodbye Christie Nursery.  We will miss you.  


Friday, 15 July 2016

Our Little Butterfly In The Wind...

I can't believe that Ella only has two more weeks left in her reception year at school. This time last year I was so full of anticipation, hope and worry at the thought of sending her to school... 


Anticipation of her happiness and achievements, hope for the friends she would make and the things she would learn. And worry that she was slowly making her way into the big wide world, less protected by me, experiencing her day to day life on her own and learning where she fits in and belongs.  

I mostly and above all else, just wanted for her to be happy and settled in her new school. Everything else would just be a bonus.

In the last couple of weeks, we've had her review meeting and her first sports day, shes met her new teacher and spent time in her new classroom. In the next couple of weeks we will be saying goodbye to some of the staff who have made her first year at school a happy one full of fun, friends, learning and achievements.  

At home time today, the children streamed out of school, each proudly carrying a large white envelope containing their first ever school report.  

I've had mixed feelings about getting her report.  I knew it would be hard to see in black and white what Ella's current level of achievement is for each part of the curriculum.  There are no ticks in the 'expected' or 'exceeding' columns, just a consistent 'emerging' throughout. And even though it's exactly what I was expecting, it's still difficult to have to accept that the gap between her and her peers is there, represented by the ticks on the page.  I know if there was a section on overcoming challenges, producing the most volume of art work or working harder than her peers to achieve similar outcomes she would 'exceed' in all of them. 

However, I am just as proud as any parent who opened their child's report this evening to find ticks in every 'exceeding' box.  

Ella has made huge leaps this year, in her speech, in making friends, in knowing her letters and phonics and in her understanding.  Yes, her progress isn't at the same level as a typical 5 year old but that's all that matters - PROGRESS.  No matter how big or small it may seem, she is still moving forward, learning and consolidating.  She's loved her time in reception and I am just as excited about what she will achieve and the progress she will make in the next school year.  

For what it's worth, I do like the word 'emerging'.  It promises that there is more to come, we haven't seen the best yet and to keep our expectations high. The growing, learning caterpillars are emerging into each individuals butterfly of potential. For some, being able to fly in each area of the curriculum comes easily but for others it takes them longer to get there. 

As I read Ella's report, I was reminded of this quote...


The best part of the report wasn't the comments from the teacher and headteacher or suggested next steps, it was this self report page that Ella has filled in herself. It speaks volumes...


As Ella's first term in reception came to an end, I wrote this post featuring Ella attempting to write 'mummy'.  And then she came home from Rainbows one Tuesday evening having done this, all by herself...


And there will always be moments like today when I am reminded that life for Ella is different and more challenging.  And as a mum, it's hard to accept that. But from day one she has taught me that she will get there in her own way and in her own time. 

And as always, her achievements, no matter how small, mean the world.


Our little butterfly in the wind, Ella bean 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...




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 

Tuesday, 30 December 2014

Another year over...

The presents have been opened, lots of food eaten and lots of fun with family has been had. Now the decorations are down as we say farewell to Christmas and await the beginning of a new year...  A good time to look back and reflect over 2014...


As the year began, I had a young baby and a toddler. Twelve months on, I now have a toddler and a pre-schooler! They still love one another as much though...

              January 2014                                                           December 2014

Over the last year, I've got involved and supported several causes, projects and campaigns.  Something I never thought would happen when I started writing the blog 4 years ago.  Here are some of the things I've got involved in during 2014 and look forward to continue giving my support to in 2015...

The Living Arrows project over at I heart Snapping...Taking a photo a week of what it means to have children in your life (OK so I didn't quite manage to keep up with this all year but I did enjoy taking part and I'll try and do better in 2015!).  So more Living Arrows starting in January.


Living Arrows photography project run by 'I heart snapping'

February is both congenital heart defect and also feeding tube awareness week.  We showed support (along with Ella's nursery friends) by wearing red for raising awareness of congenital heart defects and I shared and re-shared Ella's feeding story across social media again getting some lovely feedback (For those that haven't read it, you can do so here).  I made these named word clouds for Ella and her heart friends and these were used as profile pictures and shared across social media sites.  

                           
Congenital Heart Defect Awareness week 7-14th February

In March we donned our odd socks again to raise money for DS awareness day and Ella was featured in the 'Lose the Label' campaign.  The photography campaign was started by Michelle, mum to Mara who has Down's Syndrome.  She wanted to get the message of person first language across to people, to help others understand that people with DS are so much more than a diagnosis and that it does not define them. You can find the campaign pictures on her Facebook page Lose the Label...


I was again asked to take part in Mencap's Learning Disability week. This years focus was 'firsts' and I chose to write about the 'first' that has meant the most to me so far...Ella's first smile.  I also loved reading other contributors posts, especially those who have older children and are a few years ahead of us. We still have so many firsts to look forward to and celebrate... 


And this winter, I've supported the Matalan and Alder Hey charity campaign by wearing my alphabet scarf.  All proceeds from their sales go to the Alder Hey charity, one that I will always support after the care we all received while Ella had her heart surgery.  I've not been quick enough to get the girls their scarfs yet as they sell out so fast - I'll be quicker next time they're in stock!  

My #scarfie

And there's been a massive change in Ella over the last year too.  One of the great things about writing a blog is being able to go back and revisit where we have come from.  This year, she has grown in confidence, become a lot more grown up and has started her pre-school year at her new nursery before starting school next September.  Her communication continues to get better every week and she's now putting 2-3 word sentences together, telling stories and giving a narrative (just tonight she came and said 'Lucy dummy bath oh dear' telling me that Lucy had thrown her dummy in the bath).  Of course, Makaton continues to be an important communication tool as well and we've found that it has also helped Lucy to make herself understood and support her speech. We've made attempts at potty training Ella this year (I'll write a post on our efforts soon) but will revisit this again in the new year and have another go.  

She's become really good company with her ever present mischievous streak and wicked sense of humour... 

In June, I attended my first bloggers conference.  Attending Brit Mums Live was brilliant and I had a great time, even though I was nervous about going.  I met new people Kanchan 'intrepid misadventurer', Emma from +Adventures of Adam, Katrina aka +Mummy Whiskers  Amanda at 'The Family Patch', Carin at Artfully Carin and have loved reading their blogs over the last 6 months (even though I am bad at leaving comments - another New Years Resolution right there!).  I also finally met  in person the inspiring and charismatic Hayley from Downs Side Up.  There were a range of workshops to attend, brands galore as well as brilliant, empowering and emotional key note speeches (Emma Freud & Benjamin Brooks-Dutton).  A very inspiring and affirming couple of days - especially nice when meeting people you didn't know but you did know each others blogs.  You forget sometimes when you click the 'publish' button that people do sometimes stop by and read what you've written!  I'm looking forward to BritMums Live 2015 already...


In August I was honoured to be bridesmaid at the wedding of our good friends Nicola and Brian.  Ella was also given the honour of being a flower girl along with Rosie from The Future's Rosie.  We were put in touch with Nicola and Brian by our local Down's Syndrome group as they were facing heart surgery with their 6 month old son.  We had recently been through Ella's surgery and we went along to their house to meet them when Ella was about 8 months old.  We kept in touch and visited them at Alder Hey when Daniel had his surgery a few weeks later... And 4 years on and Ella and Daniel have grown up together and Nicola and I have become great friends.  A nanny by profession, Nicola also helps us with childcare - giving up her lie ins three mornings a week as I throw Ella and Lucy over her front doorstep at 7am so I can get to work on time (a million thank you's lovely lady) xxx


2014 has been a year of change and a year of collaboration.  There are lots of blogs about Down's Syndrome out there, all sharing experiences, telling a story and all seeking to challenge perceptions and educate society.  And by linking together as #TeamT21 we can be a bigger and more effective voice.  

Earlier in the year, I wrote these words...

"I know I am merely a drop in the ocean of change. But every drop creates a ripple. And along with all the other drops creating ripples we are collectively creating a wave.  

Together, we are a powerful force - changing attitudes, challenging preconceptions and raising awareness." 


As I mentioned earlier, in September, Ella started her new nursery.  She absolutely loves it and has settled in well.  We've made a decision about which school we'd like to send her to next September and the first steps have been made to put in place a Educational Health Care Plan for her.  In starting her new nursery, we had to say an emotional farewell to the day nursery at my work she had been attending since she was 9 months old.  I will never be able to thank the staff enough for their input with Ella during her early years (and their continued care of Lucy too!).  It was only fitting that after their recent OFSTED inspection that the nursery received a rating of outstanding...   


The two nursery workers who are Makaton tutors

And the blog, along with lots of other things has had to take more of a back seat this year. Ian is currently working away from home having a go at his dream job with the Essex & Herts Air Ambulance.  So I've been thrown into life as a part-time single mum which doesn't leave much time for, well anything! I certainly have a lot more respect and admiration for all my single-parent friends - I don't know how you do it. I also took on some new challenges at work, so life has been anything but quiet over the last 6 months.  Hopefully more time for writing and blog related activities next year.

                                      

                                      

We've packed a lot in this year and I get the feeling 2015 will be just as hectic!  



Happy New Year everyone xx



2014 
In loving memory of three influential and lovely ladies who we lost this year
Gran Tyrrell
Granny Judson
Grandma Marsh
XxX

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