Wednesday, 27 July 2016

Learning and Growing

That's it! Reception year is finished...

School is finally out for summer...  

Wow, that year went fast. The once pristine book bag is now looking well used, the hem on her dresses are much shorter and I've been praying for a while now that the velcro on her scuffed and tattered shoes would make it to the end of term (it has...just).  

The summer holidays seem to have been a long time coming and this past week I've seen so many children and families already enjoying their time off.  As we had a two week May half term break, we have finished later for summer and get a 5 week break instead of 6.  I am sure the weeks will fly by (they will once I've planned lots of things to fill the days with them!).

The children have had a more relaxed last week at school and yesterday, their penultimate day as the youngest year group in the school, they had a party day.  They were allowed to wear their own party clothes, played party games and the day ended with all the parents coming in to see the children presented with their end of year certificates.  

We arrived to find the children all sat outside in the sun playing pass the parcel.  After their game had finished we all piled into one of the classrooms for the certificates.  It was very packed - they apparently haven't had so many parents attend before - some of us got the pleasure of sitting on the tiny plastic chairs and for others it was standing room only.  

As each child's name was read out, they were asked to stand as their certificate was awarded to them.  There were awards for being a special friend, for helping in the classroom, being happy, making their friends laugh, for improving the most during the year and for working the hardest.  A lovely way of acknowledging each child's non-academic attributes (not every child excels academically) and their uniqueness.  There was a lovely atmosphere in the room (and lots of proud tears from mums and dads) as each child was individually celebrated and their special contribution during the year recognised.  I did wonder what Ella would be awarded and when it came to it my hunch was correct...


She was given a certificate for her lovely artwork and drawings - very appropriate as that is her most favourite thing to do and is something she has definitely improved in over the course of the year.  A lovely end of year gift from the teachers to each child - something for them to be proud of and take with them into year 1.

And with the end of term, comes the giving of gifts from the class to the class teacher or, in our case, teachers.  

When there is more than one teacher to buy for (job share, long term supply, classroom assistant) or your child has had support from a Teaching Assistant (TA) or Learning Support Assistant (LSA) then it can very easily become a costly business.  

I started pondering this a while ago and trying to find a way to give meaningful and useful tokens of thanks without it becoming too expensive. For Ella, there were presents to buy for her class teacher - Mrs G, classroom assistant Mrs A, two TA's Mrs S & Miss P and Mrs L the SEN teacher. Six presents in total.  Even with a budget of £5-£10 per present that would mean spending between £30-£60.

I was also aware that Ella is only one child of 30 in the class.  I knew from consulting a good friend and reception teacher that firstly no teacher expects anything and after that, there is only so many personalised mugs/keyrings they can find use for.  Her favourite gifts over the years have been 'as dull as it sounds' (her words!) wine, plant/flowers or book/coffee shop tokens. All good starting points. 

Thankfully one of the mums in each reception class started a collection for each class teacher so I gave some money to that for Mrs G.  The collection has managed to provide a present for her, her classroom assistant plus a little gift for the TA's.  

Mrs L is a Special Educational Needs Teacher who works with the reception teachers and provides support to the 7 children in the year who have additional needs.  I thought a collection for her too would be well received and managed to collect a good amount from some of the other 6 parents.  

I liked my friends idea of a plant/flowers as a gift and the associated theme of helping the children to grow over the year. I also wanted something homemade that we could personalise and the children could add their own mark to.  After a quick search online, I found enough ideas to turn the theme into a present, which consists of:

  • A terracotta plant pot (the size I used cost me £1.50)
  • Blackboard paint (already had)
  • pack of white chalk (already had)
  • Packet of seeds £2.20
  • online printables - free - see here
  • chocolates £3
  • special teacher hanging ornament £4
  • £25 gift voucher
  • card and bag £3.50
Total: £36.20 


And this was the finished product...

                   



Following on with the plant/flower theme, I gave each child a printed flower template to colour in/write their name on/personalise and make their own for the card (unfortunately I sealed the card before I thought to take a picture but will hopefully be able to add a picture in soon).

I also wanted to get a little something just from Ella for the 2 TA's who have worked so closely with her over the course of the year.  I loved how well the plant pot had come out that I went and got 2 more and added in the seeds, chalk and bags of chocolate.  Ella has written her name on the note for them.  Theirs worked out at £4.70 per present.  Can't argue with that. Hopefully they will like them and find them useful and meaningful gifts.


We will be back, before we know it, for another year of learning and growing in September...

                        September 2015

                             July 2016

School Is Out!!

Friday, 15 July 2016

A 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, 30 June 2016

I See...

I look at these photographs and see so many things... 



I see my little artist drawing - one of her favourite things to do. 

I see her concentration and focus on the task at hand. 

I see a lovely three point pen grip, fine motor skills in action. 

I see a story being told and ideas coming to life. The picture she is drawing has meaning to Ella and she can tell me what it is - she now knows what she will draw before she starts and is no longer just making marks or shapes on the paper. 

I see a picture that is also recognisable to others - figures with faces and bodies with arms and legs. 

I see a pirate and a treasure map (if you were wondering!) - complete with an 'x marks the spot'. Pirates are the theme this half term at school and she's definitely enjoying the experience - an added 'aaaarrrr' as she draws the pirate (complete with hat). 

I see how far she has come during her first year at school, what she has achieved and how hard she has worked. As reception comes to an end and we begin to prepare her for Year 1 and a more structured approach to learning, I wonder (worry) how she will cope with the transition. We have her annual EHCP (Education, Health and Care Plan) review next week and my list of things to discuss and questions to ask is already fairly long with many more flying round my head and keeping me awake at night. I know she has every reason to keep progressing, growing, learning and being happy at school. She has lovely friends and teachers and enjoys being there.

I see potential, expectations and hopes.

I see Ella xx

Wednesday, 22 June 2016

Heart MOT

It's been 5 years since Ella had her heart surgery at Alder Hey. 


We celebrated her 'heart day' just a few weeks ago with a bit of quiet reflection, lots of thankfulness and of course, cake...


Today we went back for her routine cardiac follow up appointment at Manchester Children's Hospital. It's been nearly 2 years since she last had a check up or 'heart MOT'.  

Although she's very well in herself and not showing any outward signs that her heart is anything but happy, it's always the appointment that I worry about the most. You just can't take everything being well for granted until the professionals have checked what's going on on the inside. 

We worry about her heart function, whether it's coping with her growth and growing with her. We worry about her heart's electrical function and also about the pressures in her heart, arteries and vessels. We are lucky that she isn't on any heart medications at all but I guess there is again a worry that she may need to be in the future. 

Ella was a little superstar today, considering she won't have remembered the last time she was there. She made no fuss, lay herself on the bed and stayed really still while the doctor performed the ultrasound of her heart (ECHO), which was apparently 'tickly'. 

There was no requirement for dvd/phone distraction or constant supply of chocolate buttons like at the last appointment! She was equally as good during her ECG and even removed the stickers herself (ouch).

Thankfully I can report that after her tests today, all is well and we have been asked to go back again in 18months time. Our little warrior has a happy and healthy heart. 

*big sigh of relief*



Happy Wednesday everyone xx

Friday, 8 April 2016

Heart & Sold Art exhibition

We have recently spent two lovely Saturday afternoons visiting Salford Museum and Art Gallery. 

Our reason for visiting was the recent opening of the 'Heart & Sold' Art exhibition. This unique and special art collection was previewed in London and has travelled to New York before landing in Salford for its longest opening yet.  The exhibition is a platform for over 30 artists - who all have Downs Syndrome - to showcase their photographs, pictures, paintings, creativity and talent.



The art work exhibited has received critical acclaim with one of the artists original works gifted to The Duke & Duchess of Cambridge on the birth of Prince George and hangs in his nursery. Arnold Schwarznegger also owns artwork by one of the artists.

The exhibition itself is wonderful.  A real diverse collection of different mediums and expressions of creativity.  Paintings, collages, line drawings, photographs, watercolours. Pretty much anything you can think of.  The gallery space has a lovely welcoming atmosphere and although there were a lot of people there because they have a connection with the Down's Syndrome community, there were also those who had just stumbled upon the exhibition too.  Everyone there was appreciating the art work for what it was - Art.  The fact that the artists have Down's Syndrome is important, but it doesn't define the exhibition. I would say it definitely enhances the experience though, especially for visitors who don't know what the exhibition is about before they walk through the gallery. 

The afternoons we went along, we were also able to enjoy helping to create elements for a brick wall, which is an evolving part of the exhibit that will be added to for the duration of the exhibition at Salford.  We were helped by the lovely ladies from Venture Arts to make some clay flowers and some moss and also some of the clay bricks for the wall too.  Good, messy fun and Ella really enjoyed getting involved too.  Lucy managed to sleep through the hands on sessions at both of our visits but did wake up in time for a trip to the cafe on both occasions!



(Photo Credit to Suzie Moffat, Heart & Sold Director for the above photographs)

The Museum is also worth a visit - there's a Victorian street to explore, with the option of dressing up too.  Ella and Lucy both looked very fetching as Victorian street urchins!...



The exhibition is on at Salford Museum & Art Gallery until June 5th 2016 and is well worth a visit.










Tuesday, 8 March 2016

A little something extra... Everyday

I don't think about or see Ella's Down's syndrome everyday. I used to, but not now.  On the face of it she is like many typical 5 year olds. She goes to school, has lots of friends, argues with her little sister and doesn't listen when she's asked to do something. She loves being outside, being creative, helping in the kitchen, dancing, trampolining, roly polys and of course, chocolate. 

But, there are differences that come with having a 47th chromosome - that 'little bit extra' (a complete third 21st chromosome for most) that those with Down's syndrome have.  Ella still needs help with lots of things that her peers don't - getting dressed, help with what is happening next, encouragement in her play and support with all aspects of learning at school - to name a few. It also means that Ella herself has to work that little bit harder in order to learn new things or gain new skills.

The little bit extra also means that Ella's had some medical issues along the way too - her heart defect which she had surgery for at 6 months old, low muscle tone which led to poor feeding and meant she took longer to learn how to roll, crawl, stand and walk. She's also had some hearing issues over the years and wears glasses to correct her poor vision. 

So, that little bit extra is responsible for a big change in many areas of Ella's life and development. Having an impact on her health, her view of the world, how she learns and how she communicates. 

But I've also learnt over the last 5 years that that little bit extra means so much more than challenges and worries. That little bit extra is packed with bravery, tonnes of determination, a bucket load of independence, lashings of cheekiness, and a humbling awareness of kindness, compassion and love. 

I feel very priveleged that we get to experience our amazing girl who has that 'little bit extra' (and all it brings with it)... Everyday

Sunday, 31 January 2016

Losing Down's syndrome?

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



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

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

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

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

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

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

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

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

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

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


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



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

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







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