Thursday, 22 September 2016

Visit from the Tooth Fairy

When Ella was a baby, one of many things we were told (that subsequently turned out not to be the case), was that as she had Down's Syndrome she would teeth later than other babies and when they did start appearing, they would take longer and come through in the wrong order.  

I didn't get any teeth until I was 15 months so had visions of Ella being toothless well into toddler-hood.  In reality, she cut her first tooth at about 6.5 months old and then continued to get all her teeth by the age of about 2.5/3years old.  We were also told that she may be late to lose her baby teeth and that her adult teeth may take more time to appear.

Just after her 5th birthday last year, we noticed that her two front bottom adult teeth had cut through the gum and were sat neatly behind her baby teeth (which were wobbly).  After a quick call to the dentist, I was assured that this was all very common and that we could wait until the following week when our regular check-ups were due anyway.  At the check-up, the dentist reassured us that as the baby teeth fell out, the new adult teeth would work their way forward into the space they left behind.  We just had to keep wobbling the baby teeth to encourage them on their way (definitely a 'blue job' in our house - I can't stomach wobbly teeth!). It took another couple of weeks but finally, her first tooth fell out followed a week or so later by the second one.  


And then, there was of course the excitement of the Tooth Fairy visiting.  

After watching the episode of Peppa Pig where the Tooth Fairy comes, Ella had really got on board with it...  So much so, that we went through a period of time where if something was lost and you couldn't find it (car keys, daddy's ID badge for work and various teddies, books, jigsaw pieces and a spoon) then it was most probably stashed safely away under Ella's pillow with the expectation that the Tooth Fairy would visit.  

She definitely knew the connection between wobbly teeth and the Tooth Fairy and when it eventually came out, she proudly put it into a little envelope and left it under her pillow...


She did pay Ella a visit leaving her a shiny pound coin, which Ella bought herself a chocolate babyccino with on our next visit to the coffee shop (lesson in asking for things and giving money over in shops thrown in there too #lifeskills!).

There was more Tooth Fairy excitement last week when the first of her top front teeth came out.  Luckily for me it came out at school, although she couldn't tell them where it came out which sparked a major 'tooth hunt' around the playground and classroom.  Tooth was eventually found and she came out of school clutching it proudly, asking for a shiny coin.


Now she looks all gappy and even more grown up than she did already - I'm just hoping the new teeth are as straight as her baby teeth were, although with my wonky teeth and history of over crowding, I'm crossing my fingers! 






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.  


Tuesday, 16 August 2016

Summer Baking Class with Ella

We are almost half way through our summer holiday.  We've had some lovely family days out, seen family and friends. There's also been days where we've had nothing planned and just spent some much needed time at home and in the garden. 

As Lucy's nursery is a day nursery, it doesn't operate with terms or holidays and is open all year round apart from Christmas and New Year.  When I gave up work in December, I knew we wouldn't be able to afford to keep her in nursery the three days a week she was attending but I also knew how much she loves it there and how much she gets out of going.  She's made some lovely friends and it gives her the chance to spend some time on her own, to learn, socialise and gain some independence.  I didn't want to take her away from all that completely. So for the last few months she has been going for just one day a week instead of three.  She will sadly be leaving them next week as she is starting pre-school at a more local nursery in September, but more on that soon.

On the day Lucy is at nursery during school holidays, it means I get a day a week just with Ella. Quality time with her doesn't happen that often (if at all) now she is at school and with Lucy around too, it's been ages since just the two of us did something together.  

I started looking for something special for the two of us to do and came across an advert for a summer cooking class. Knowing how much Ella enjoys baking or helping in the kitchen and that she just loves learning by doing and anything creative, I booked her a place.    

We arrived armed with our apron and tupperware and were greeted by the lovely Jo, who would be teaching the class. We soon discovered that we were making chocolate chip cookies - 'yummy delicious!' piped up Ella.  There were seven children in the class with Ella and another little girl who was also 5 being the eldest. As most of the children were younger, that meant the pace was nice and gentle so Ella had no problem keeping up with what was happening and there was plenty of time to carry out each stage of the recipe. She's well practised in what to do anyway as baking is a favourite activity at home.

The children had to share utensils and ingredients between them which allowed for some conversation, sharing and taking turns.  They all enjoyed measuring, mixing, stirring, sieving, chopping the chocolate and getting their hands messy.  

We enjoyed it so much that we are going back for next weeks class.  It's a shame it runs on a Friday as I could have taken Lucy during term time but she will be in nursery.  There is a possibility of some Saturday classes starting and we can always go to the future half term sessions, with Lucy too. 


                           
(Picture courtesy of Beyond Baked Beans)


After they had made their dough, the children even enjoyed washing and drying the bowls and utensils. They helped to cleaned up whilst their cookies were in the oven (they cooked one each at the class to taste then got to take the rest of their dough away to bake at home).

Once the tidying was complete, it was time for a well earned glass of juice and most importantly, a cookie!

'Cheese!'


'Yummy Delicious' as Ella would say xx

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

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, 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

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