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

Posted on February 25, 2017 by Is Eczema Curable? So What Can Cure Eczema

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.

You can watch Series 6, Episode 5 of Call the Midwife on iPlayer here until 21st March 2017

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A World Without Downs

Posted on October 16, 2016 by Is Eczema Curable? So What Can Cure Eczema

I will write more about ‘A World Without Down’s/NIPT soon – I 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 pregnancy, 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:

http://www.bbc.co.uk/iplayer/episode/b07ycbj5/a-world-without-downs-syndrome

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…’

https://www.thunderclap.it/projects/47907-a-world-with-down-s-syndrome

Thank You

#worldWITHdowns

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A World Without Down’s Syndrome?

Posted on October 8, 2016 by Is Eczema Curable? So What Can Cure Eczema

Some of you may have noticed (many of you won’t care!) but it’s almost a year since I posted on here. Not something I’m proud of nor ashamed of but it has made it harder each time I approach the keyboard to know where to start with all of Rosie’s achievements (and mischiefs) in the past 12 months.So I’ve chosen the eve of a potentially groundbreaking short film to ease back in and write a quick post to help spread the word…Tomorrow (Wednesday 5th October 2016) BBC2 will be airing the eagerly awaited documentary from Sally Phillips, ‘A World Without Down’s Syndrome?’”Driven by the experience of raising her son Olly, who has Down’s syndrome, Sally explores some of the ethical implications of our national screening policy.”This could be an important documentary for something that is so so important to me when new parents are faced with a pre-natal diagnosis of Down’s syndrome. That something is, ‘choice’ and not just choice but INFORMED choice. This was one of the primary reason’s I started The Future’s Rosie and it continues to be the driving force behind why I (albeit sporadically now) blog and share personal moments of Rosie’s life on social media. This in itself isn’t easy as I question myself daily about whether it’s the right thing to do – do people really see why I do this or do they carry the opinion I’m exposing what would otherwise be personal family moments as a selfish need for attention? I can answer those that think the latter by saying in all honesty life would be much simpler and less hassle for me if I didn’t do it at all, I’d much rather live in a world where Rosie’s condition wasn’t something I felt I needed to share to show ‘it’s okay’. Too many people are afraid of the ‘unknown’ with Down’s syndrome – yes I was that person too once which is why I know it’s a very real problem. I’m not and never intend to be a part of any ‘PC brigade’ most DS advocates don’t either. For me it’s always been about educating in a non-patronising way and if that means sharing my daughters life to help the cause, then for now at least I’m still positive it’s the right thing to do – even if it is a mere drop in the ocean of change.I, along with so many other parents am very grateful that Sally, who is already in the public eye for professional reasons has used her platform to reach people on a much grander scale than someone like myself could ever dream of. This isn’t a small gesture either I would imagine it’s taken an awful lot of hard work, careful contemplation and courage. Sally is now exposing herself to inevitable debate and criticism which can’t be easy – all for the greater good of educating society to the ‘other’ side of ‘Down’s syndrome, a side that many healthcare professionals would have you believe doesn’t exist – and as you may or may not know I say that from first-hand experience. If you get the chance please do tune in to watch or set your record buttons! The more people that see this short film the better so please share and spread the word too! A world without Down’s syndrome would be a world without my baby, my beautiful girl, ‘Daddy’s little Princess’ and to that I say a resounding no thank you.http://www.bbc.co.uk/programmes/b07ycbj5

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Potty Training a child with Down’s Syndrome – our journey

Posted on September 5, 2016 by Is Eczema Curable? So What Can Cure Eczema

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!

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