Sunday, 9 July 2017

It's been a while...

I hadn't actually realised that it had been so long since I posted something, anything on here!  The blog has crossed my mind over the last few months but I've been struggling a bit with 'writers block' and not really knowing what to write about or what makes people want to stop and read something little old me has written.  

So, we are all fine, Ella is doing well and about to finish Year 1 at school.  Lots of preparation currently happening to make sure the transition from Yr1 to Yr2 is a smooth as possible for her as a child with special educational needs.  There are going to be a lot of changes next school year so it's important that the time is put in now to help her feel prepared and still happy to go to school.  I will write more on that soon (promise!). 

Lucy is also getting ready to make the transition from pre-school to reception.  She is more than ready for school now and is excited to be joining her big sister - in some ways she is more prepared than Ella was - she knows the school and has lots of lovely little friends from both her nursery and other siblings she has met in the playground over the last 2 years.  In other ways it seems much harder as I can't believe our little lady is about to start school, the last 4 years have flown by and selfishly, I'll really miss her being around at home.

But don't worry about me, once Ella and Lucy are back at school I won't be twiddling my thumbs or crying on the sofa all day.  Come October, life is going to change for all of us as we welcome another baby into our family.  Exciting, chaotic and fun times are ahead! And I guess this has been a good enough reason why the blog has been neglected for months - morning sickness and fatigue don't really help creativity or productivity.  I should maybe stop feeling so guilty...



Here's to new adventures... and maybe a few more blog posts too!

Happy Sunday all xx

Tuesday, 21 February 2017

Call the Midwife episode featuring a character with Down's Syndrome


Being a regular viewer of the BBC One drama 'Call the Midwife', I noticed last week during the preview for this weeks episode that there was to be a character with Down's Syndrome appearing.
  
I was intrigued and a little apprehensive. Mainly though, I was excited that there was someone with Down's Syndrome being represented on such a well loved show with high viewing figures. I wondered how well the part would be incorporated into the existing premise of the show and also what the storyline surrounding the character would be.  And bearing in mind when the show is set (early 1960's) and the very different attitudes that existed in society towards people with any kind of disability, I wondered whether it may be too sad or upsetting to watch. 

This is the second time an actor with Down's syndrome has appeared in the show. The lovely Sarah Gordy starred a few years ago alongside an actor with cerebral palsy in a heartbreaking storyline which was a difficult watch but very well executed by the actors and writers involved.  

Call the Midwife is a show that has proved time and time again not to be afraid to tackle difficult or sensitive issues of a time in the past and a time in society that many people alive can still remember today.

This weeks story explored some more of those difficult issues.  The young character with Down's Syndrome (Reggie) is left alone early in the episode when his constant and protective mum dies suddenly.  


He is taken in by his cousin (Fred) and his wife (Violet) and although things get off to a rocky start - Violet isn't at all sure about having him around because they dont know anything about 'people like him'.  Then, after Reggie is left alone and tries to cook his own breakfast he leaves the gas on and manages to get locked out.  What follows are the most heart-wrenching scenes of him being bullied in the street and called names before we see him finding his way back to the home he shared with his mum, banging on the door calling for her and not understanding why she isn't coming to the door to let him in.  


The options for Reggie are a stark reminder of the time - to stay with Fred and Violet his only relatives or to be placed in an institution (asylum) and locked away from society and the life, places and people he knows.  Out of sight and mind, alongside others with mental and physical disabilities.   After Fred visits the asylum he is thankfully appalled at the mere thought of sending Reggie there and we are then left wondering whether he will stay with Violet & Fred to become a regular character in the show (yes please shouts the nation!). 

We see Reggie flourish helping Fred out in the garden at Nonnatus House but he is very aware that he doesn't really fit in there as he wants the company of people his own age. In the end there is a happy outcome.  Reggie is found a place in a community village where he can live with other people his age whilst being a gardener - the job he has come to love while being with Fred.  And Violet, like the rest of us became very fond of Reggie - I really hope he makes another appearance in a future episode. Daniel Laurie, the actor who played him was just fantastic and has been shown an outpouring of love and appreciation on twitter and in reviews of the show.

All the way through the episode, even with it's twists and turns and the sometimes difficult insight into life at the time for someone with a disability, I felt that we were in the hands of a writer who knew what they were doing with this character.  The way the story moved and the topics covered in such a short time made me realise quite early on that someone behind this episode had some life experience relating to the issues unfolding on the screen.  I was later informed that the writer of the episode, Andrea Gibb, has a sister with Down's Syndrome which explained why it was all stitched together so well.

I loved the ending - the community village for people with disabilities, where Reggie could be independent after so many years living under his protective mother.  Where he could be around people his own age while doing a job he loved.  A nod to the future and a very forward thinking enterprise at the time and something that many people may not be aware of even existing, either then or now.  I know I wasn't aware of these initiatives until both our grandmothers died a few years ago.  Our grans had both been nurses at some point in their lives and though they never knew each other, they both requested that donations at their funerals should be given to the Camphill Village Trust - a cause they had both supported for a long time, long before Ella was born.  The trust provides somewhere where all abilities of people can be supported to learn, live and grow within small supported communities across the country. 

I am glad that Ella is growing up in a society that has come a long way since the 'Call the Midwife' era of poor social integration, institutions and a lack of support for adults with disabilities.  It doesn't make being the mum of a child with a disability any easier though or stop me worrying about the future - It is one of my biggest fears, to not be around for either of my children.  

I don't know where Ella will want to be when she is older - I know I'd keep her at home forever if I could but knowing how independent and determined she is now then maybe assisted living or even living independently will be options for her future.  We will have to wait and see.  I do know that I want her to continue to be an active member of society and to be able to get a job doing something that she enjoys.




Saturday, 7 January 2017

Easy Homemade Pizza Dough Recipe

Pizza dough recipe

Something a little different from my usual content but as it's a new year, there are new things to share and new directions to explore! 

After being repeatedly asked for the recipe whenever I've made pizza for friends and family I thought I'd do a little post and pop the recipe here so if you want to, you can print it and try it for yourselves.  

There are hundreds of pizza dough recipes online and after trying a few of them, this is the one I keep going back to both in terms of its ease and because most importantly, it produces a yummy pizza.

I've shared before Ella and Lucy's love of helping in the kitchen.  Ella especially, learns by doing and by being involved (in this case getting covered in flour and sticky pizza dough hands!).  I feel it is important for both our girls to learn life skills such as cooking and baking even though they are still relatively young.  They both enjoy their food so the end product is always a good motivation for them to help out too.  I've also been taking them to a weekly cooking class for the last few months and they both love it.

This pizza dough recipe involves lots of different activities and learning opportunities - measuring, mixing, pouring, kneading and of course eating!  There are lots of different ways of approaching this activity with younger children as it incorporates lots of different skills. Maths, quantities, weighing & counting, hand eye co-ordination and using fine and gross motor skills.  Children can get involved in the dough making process or for younger children (and those of you who like to keep your children and kitchens clean), adding the sauce and toppings may be where they can get more involved.  

Ella can now top her own pizza with very little help.  I provide the jar of sauce and a spoon and the cheese and (almost) leave her to it!  We've found that although the girls love to adorn their pizzas with lots of toppings, once cooked they take everything off again so I just leave theirs quite plain.



'I did it mummy!'

Making our own Pizzas has become a weekly activity in our house now and is something we all enjoy doing.   I appreciate it's very easy to buy a pizza but making your own is a lot more satisfying and really doesn't take much more time or effort than a ready made one.  Once you've mastered the basic recipe, you can be as creative as you like both with the dough and the toppings.  

I have got in the habit of keeping a tomato based pizza sauce in the cupboard and some grated mozarella/pizza cheese in the fridge.  There are only 4 ingredients in the dough recipe itself which most people will already have in their store cupboards.  This is also a versatile recipe - you can make the dough ahead of time or to use straight away.

Ingredients - quantities provided make x2 10 inch (thin crust) pizzas 


10 oz Plain Flour ('00' grade if you can get it but regular plain is fine)

6 fl oz warm water

1 tsp fast acting dried yeast

1 tsp salt


Method


1. Weigh out your flour and put it into a large mixing bowl along with the salt

2. In a measuring jug measure out the water (should be warm but not hot or you'll kill the yeast - I use water from a recently boiled kettle and dilute until warm)

3. Add the yeast to the water in the jug and stir until dissolved 


4. Add the water/yeast mixture to your bowl with the flour and salt in it

5. Mix using a fork or your hands until the mixture has come together. Don't worry about making one clump of dough at this point, it wont properly come together until you start to knead it.  I find it is much easier to tip the roughly mixed contents of the bowl out onto the worktop and begin to knead it to bring it all together

6. Knead for 5 mins, or until the dough is smooth and elastic then shape into a ball


(you can skip step 7 & 8 if you're in a hurry...)

7. Using a small amount of olive oil, grease a mixing bowl and place the dough into the bowl. Cover with cling film and leave somewhere warm/room temp to rise

8. Leave to rise for at least an hour 


9. Then roll out your dough as thin as you like and place on a floured or oiled baking tray.   Top with whatever your favourite toppings are.  Alternatively knock the air out of the dough, loosely wrap in cling film (it will continue to expand) and keep in the fridge for up to 3 days if you want to save some for later.

10. Bake for approx 10mins at 200C (180C fan)

Enjoy!

Saturday, 26 November 2016

Now you are six

A letter for Ella...

To Ella, our wonderful girl, today you are 6!

Six years since I missed my own baby shower because you decided to show up three weeks early. Six years since our journey into the unexpected started. Six years of being a mummy - your mummy.



A lot has happened in the six years you've been here and it's hard to remember what life was like before you.  We've certainly been on a roller coaster ride but you've managed to keep our hands skimming the clouds for most of our time together. 

This past year, you've changed and grown so much.  You're settled and happy at school, you love your teacher and being with your friends.  Your understanding of the world has developed and you are now able to tell me so much about what you want, what you like and don't like, what you've done at school.  The improvement in your speech has also enhanced your cheeky side and your sense of humour is really beginning to flourish. This week you've mainly been telling me that you're excited for your birthday and your party (I am too!), the first year you've been able to tell me so.

A few weeks ago you reduced me to tears in the bustling playground as I sent you off into school with my usual kiss and 'Love you'.  You turned back to me and for the first time ever, said 'love you mummy' - still enjoying firsts 6 years into our adventures together.

You love your little sister, Lucy.  I love watching your relationship grow and feel pride (and some trepidation for your teenage years!) at the independent, determined and confident little girls I am lucky enough to call mine.  



Over the last year, you've lost four teeth, grown about a foot taller and over the summer you mastered a major milestone and became dry day and night - no more pull-ups!  Big changes that signify how you're growing up way too quickly.

Out of school, you've started Rainbows (who have promoted your inclusion and independence) as well as cooking class (learning listening and life skills) and swimming lessons (still some way to go but you love being in the water and you try very hard).  You still love bouncing on your trampoline, anything involving a glue stick or a felt tip and your pictures and writing have come on so much.  





So Ella, my giggly girl with the ever so squidgy cheeks, who gives the best hugs

You continue to open my eyes, my mind, my world and my heart

Happy Birthday!  
Have amazing fun being six


Love Mummy 
XxX



Sunday, 6 November 2016

Our little Rainbow

I have fond memories from my childhood of my time as a Brownie and Girl Guide... 

Drinking my first cup of tea at Brownie camp, first time away from my mum and dad (a whole 3 miles down the road), being a sixer, the honour of carrying the flag for our unit at church parade, doing a reading in church, trips to the pantomime, indoor marshmallow toasting with candles (probably not allowed these days), bonfires, playing 'murder in the dark' - always a favourite as we could do lots of screaming when we 'died' - as well as other games and making new friends I didn't go to school with.  I'm glad they've updated the uniform now though, the brown culottes were particularly awful!  

I remember when Rainbows was introduced - a section of the girl guiding movement for younger girls aged 5-7.  As Ella reached school age, I put her name down for our local Rainbow group.  I was keen for her to experience being a part of the guiding community and to have an extra opportunity to be included, to learn, to grow and to have lots of fun in the process.  

I was very open with them on her application what she could do and what she would need help with but did worry that they may not be able to accommodate her needs.  I even offered to get involved as a leader if necessary so that they would have additional adult support if that was what was needed.  

After nearly a year on the waiting list I got a call to say she could start in April after the Easter break.  I had a long discussion with the leader who called me and explained about Ella using makaton, that she was still not toilet trained and that she needed close supervision. 

After bombarding them with all that information, we went along to her first session at Rainbows.  I took her in, offered to stay and was told as long as I'd left a contact number I could go but if I wanted to stay then that was fine too.  And with that, the Rainbows had now formed two lines and Ella happily sailed passed me, following her peers with a wave saying;

'goodbye mummy, see you later' 

So, decision made for me, I left her to it. And that's as hard as sending her to Rainbows has been, unlike a lot of other activities we have signed her up for or tried to include her in before.  No EHCP's to sort, no IEP, meetings to be had, no funding or 1:1 support to be found. No conditions on how and when she can take part.  The onus on inclusion and giving Ella the supervision she needs has been taken on 100% by the Rainbows team and not passed back to me as is so often the case.

The leaders ensure she is safe and supervised and able to get involved in whatever activities they are doing. The guiding movement has a commitment to be accessible to all and it's been fantastic to see that ethos of inclusion working well in practice.  It proves to me that inclusion can happen and can work as so often we come up against barriers and challenges to allow Ella to take part and be included with her peers.

Every week they do a craft activity and we all know how much Ella loves her art and crafts. Every Tuesday she comes home proudly clutching a project related to whatever topic they are doing covered in wet glue/sequins/feathers/wet paint/drawings.  One week we even got her first ever independent, legible attempt at her name:



This week at the annual Rainbow, Brownie and Guide 'Bonween' party, Ella along with several other little girls made her Rainbow Promise.  We have been practising the promise over the last few weeks and have learnt the Makaton version too to help Ella commit it to memory better.  She was a little bit overwhelmed by all the people and what was expected of her on the night but she did a fab job considering and I am super proud!  

Here is the picture of her with her trefoil badge getting a welcome handshake:



I was very impressed to find the Makaton version of all the guiding promises available on their website (another sign of their commitment to inclusion and being accessible to all):





I am sure Ella will continue to enjoy being a Rainbow and in a couple of years she will hopefully move up and become a Brownie.

I've kept my Brownie sash all these years, covered in the badges I earned (including m Highway badge), which six I belonged to (I was an Imp), my pack name, promise badges and my shiny silver trefoil badge.  Once Ella graduates to Brownies I'll be able to show her my badges and I look forward to helping her to earn some of her own too.


Our little Rainbow xx






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.


Friday, 7 October 2016

A World Without Downs

I will write more about 'A World Without Down's/NIPT soon - need some time to gather my thoughts first (and I've got a poorly Ella to look after at the moment!).  The following post is cobbled together from my Facebook posts over the last few days... Alternatively you could read 'Losing Down's Syndrome?' - a post I wrote earlier in the year.

Many of you may have noticed that Down’s Syndrome is big news at the moment. Something that I'm sure you know is important to me.

This is the week that Sally Philips’ important documentary is due to air. She will explore the ethical issues and questions arising from the proposed roll out of the new NIPT screening test for Down's syndrome. 

The biggest question being asked…


Can you imagine a world without people like Ella?


I am aware that I share a lot of articles, pictures, blog posts and other information relating to DS on my timeline. I am not apologising for this, Down’s Syndrome is a big part of our lives and I am very committed to educating others (maybe you) and busting some of those long standing, ingrained cultural myths about the condition. 

Mainly, I want to get across that having DS is not to suffer, is not debilitating and does not cause distress or trauma to those living with it, (unlike the media would have you believe).

I am not against testing or screening in pregnancy. Nor am I against the new NIPT screening that offers women the chance to find out earlier in their preganancy, with greater accuracy and in a safer, less invasive way whether her unborn child has a chance of having a chromosomal abnormality – such as Down’s Syndrome.

I do believe women should have choice – in this case, to terminate or not to terminate as difficult a concept as that may be to me. What I am striving for, along with many others is for parents to be given balanced, factual, unbiased information relating to a positive diagnosis of Down’s Syndrome along with unbiased language (no ‘I’m sorry' and using ‘chance’ instead of ‘risk’) and access to support following a diagnosis – whether that is given pre or post-natally. This is happening far too infrequently at the moment.

I’m encouraging everyone to try and watch the documentary and to think about the issues that Sally puts across.  For she speaks for the vast majority of us within the Down's Syndrome community.

You can watch on BBC iPlayer (UK only) here:

If you watched the documentary or not, please consider taking a few seconds to join our social media THUNDERCLAP for Down's syndrome.  Supporting the need for women to be given unbiased, factual and better information regarding Down's syndrome and the screening process itself. We'd also like to see better access to counselling and support groups at the point of diagnosis and that language used should be non-leading e.g. 'I'm sorry...'

Thank You
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