Downs Side Up Uncovered - the Shoot

After Kate @kateonthinice who writes the Naked Mum blog persuaded me to join her one naked mum a month drive to celebrate our mummy bodies, I decided to tie it in with World Down Syndrome Day on 21st March, the theme being LOTS OF SOCKS or different socks as we are calling it in our house, for everyone is different.

While I was at it I thought I might as well raise funds as well as awareness, so I am collecting monies for the vital work of Down Syndrome International, the Down's Syndrome Association and the Cornwall Downs Syndrome Support Group.

And so the wheels were set in motion. These things are always organic, I never have an end plan, I just follow my nose. 

The wife of a former employer is a supremely talented and professional photographer Maryna Halton of Photograph by Maryna, who happens to specialise in boudoir photography. Although not the natural Mummy look we were trying to achieve, she was used to snapping naked bodies, putting semi clad women at ease and had 'seen it all before' so to speak. She very kindly offered her skills for free. 

So too did her partner Julie Wieczorek of Angel Face, expert mineral make-up artists on Miss World.

Julie applies make-up to a trembling Hayley

A local film maker also offered his services, and Geoff's video clip of the preparations and why I did it is at the bottom of this page.

Suddenly there was a team involved in Downs Side Up Uncovered. The sponsorship started rolling in and there was no going back. Gulp

As the day dawned and the props had been gathered, the nerves increased. I'd made my reasons for doing the shoot clear in Downs Side Up Uncovered, showing the bodies of mums of children with disabilities are like any other, that I lay my feelings bare in the blog, that I am not just a campaigner and Mum but a woman and wife as well.

The day began, the nerves soon abated, but I was astonished at how emotional I found moments of the day. Tears welled in my eyes. What I hadn't foreseen were the stories of those helping out, the reasons behind why they wanted to help.

I hadn't twigged either, that the last time I had been naked in front of near strangers was at the birth of darling Natalia. My body was remembering. I thought too about the families we support and what the day was all about and the tears pricked more, a kind of pride too I guess.

Then of course there are the emotions associated with getting older. The last time I took a really good look at myself naked was probably about 10 years ago and I didn't have to suck my tummy in then. Now, at 43 years one has to work a bit harder to look effortlessly natural, or maybe it just doesn't matter as much what you look like. Priorities have shifted significantly.

Hayley clings to her trusty dressing gown

And so, we did it. We spent 5 hours, doing different poses and locations. We all felt washed out at the end, nervous to get it right, not offend anyone, to produce artistic, tasteful images that portray the real woman. I haven't seen the pictures yet, Maryna is looking through them now. We'll choose the best and  send one over to Kate for her blog next month. Perhaps we'll reveal the others slowly as the charity funds mount up in the pot. Maybe a newspaper would like to feature one and champion our cause. Who knows. 

For now, here is the first of the behind the scenes pictures of the naked mum that is Hayley Goleniowska.





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Downs Side Up Uncovered


It's that time of year when we begin thinking about World Down Syndrome Day which is coming up on the 21st March. The date represents the 3 of chromosome 21 that individuals with Down's Syndrome have. 

To raise awareness it is also Lots Of Socks Day, or Different Socks Day as I prefer to think of it. For we are all unique and play an equal role in life's colourful tapestry.

We can all get involved in this, wear different funky socks, dare to be bold, get your school involved, your colleagues.
I've decided to do some fundraising for 3 major charities; our local support group, the CDSSG, the Down's Syndrome Association who help families on a national level and Down Syndrome International who work globally.

What am I going to do? Run a marathon? Cycle from Lands End to John O Groats? Sit in a bath of baked beans? Sky dive? 

No. I don't have the time or the stamina for the first two options and I'm not very keen on beans, and I did a sky dive for charity when I was at college, so...

I'm going to be taking my clothes off for a photo shoot. I'll be protecting my modesty with a multitude of differently coloured socks.  Yep, that's right, I'm getting my kit off Calendar Girls style.


Yep, that's right, I'm getting my kit off Calendar Girls style.

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How on earth did this all came about? It's is a question I have been asking myself the last couple of days as I nervously prepare for the hoto session.

It began last year at the Britmums Live Brilliance in Blogging Awards ceremony, where I met Kate @kateonthinice for the first time. Kate and I really hit it off and shared a giggle over a glass of bubbles. We are both quite different, but our personalities slotted together, and it felt like I had always known her. It was a very rare evening where we felt like women, friends, writers, not only Mums.

Kate's blog The Naked Mum is a wonderfully supportive community for Mums trying to value every aspect of their lives, whilst supporting one another. She's had an idea to ask one blogger a month to pose naked, a way of showing that we are not just mums, but women, wives and partners too.

Kate says we should try things outside our comfort zone. It's better than regretting not doing them later on in life. And after all, in writing a blog, one lays ones feelings bare every time you press the publish button.

But more than that I want to show that Mums of children with Down's Syndrome, in fact any disability, are just like everyone else. We have wobbly bits and bits we like to hide, there are the unwanted pounds, places we are proud of, bits we don't mind flaunting, bits that have been stretched beyond return but most of all our wonderful bodies have made and nourished our beautiful children, just the same as everyone else. I am yet to find the green scales replacing skin.

Natty gets her first taste of breast milk at 4 days old

I remember when Natty was born, that I felt ashamed of my body,  foolishly guilty that it had not got it quite right. I have also suffered 5 miscarriages. By getting naked for this year's WDSD I am burying that ridiculous notion and I hope it helps other women celebrate the wonder that is creating all and every life.

I also help to raise awareness for World Down Syndrome Day and raise some money for those wonderful charities. Please sponsor me.

Hayley x

Update on The Undateables

Well, we all watched the inspirational and very dateable Kate on The Undateables 2013 last night with pride, nervousness and excitement. 

Kate riding high after last night's programme

Kate is an incredible woman that I had the honour to meet when attending the British Institute of Learning Disabilities annual conference. She also has Down's Syndrome.

Today I copied and pasted some of the lovely encouraging messages I soureced from Twitter and Facebook and sent them to her colleagues, along with the rather nosey question "Is she still seeing Simon?" 


Kate was thrilled.

Kate's colleagues are protecting Kate from the media and fielding too many questions as she is very tired after the excitement of watching the programme last night. But they passed this message from her to her well-wishers and a lovely photo showing how happy she was at work today:


“Simon and I watched The Undateables together – along with over 30 family and friends! It was such a lovely evening. We are arranging to meet again, we’re getting on really well and we’re both going to see how it goes from here.”

And is Kate relaxing at home tonight? No chance. She is out with friends watching a pantomime!


So, it looks as if The Undateables got it right. Despite the titles and what you think about the directors' cuts. She provides a positive role model for our children, she fills we parents will hope, she has moved many to tears of joy. The nation has fallen in love with her beautiful ways and her sense of humour. No, she is not 'cute'. She is a woman, enjoying the world of dating.

Even Rufus Hound tweeted @RufusHound to
@DownsSideUp "I think she is most things that we should all try and be. She's brilliant."]

READ MORE ABOUT THE PROGRAMME AND KATE HERE IN KATE STARS IN THE UNDATEABLES

Natty, model with Down's Syndrome in new catalogue

Natty features in the Frugi Organic Clothing catalogue for the second season, SS13. 

I do believe they are the first company to use a model with a disability more than once in their campaigns. So hats off to them.
Here are a few of the best pictures from the photoshoot, which I think really manages to capture her personality and essence this time around.

I hope you like them. Natty had fun as you can see but of course she is a true ambassador, gently changing perceptions of that extra little chromosome from within hearts everywhere she goes.




To see more candid pictures and find out what happens at a photoshoot, read BEHIND THE SCENES AT THE FRUGI PHOTOSHOOT here.

To read about the other children breaking down the barriers to make advertising more inclusive, read PIONEERS WITH DOWNS SYNDROME here.

To dee more pictures and read about Natty's other jobs visit our NATTY G: MODEL WITH DOWN'S SYNDROME PAGE.

Britmums January 2013 SEN Blog Round-Up


Welcome to my first round-up of 2013. Remember to leave a comment or join in the linky at the bottom if you’d like one of your posts included in next month’s round-up.
For all of us, whatever our faith, background or ideals, a new year is a time to think about new beginnings. It is a time to draw a line on the things that did not go to plan and put box up negative feelings and experiences. It is a chance to pull the best threads of the past year together. This month, I have chosen a set of blogs that do just this. Some of the bloggers are grateful to have had wonderful years and are keen to see that continue in 2013. Others have taken on new roles or challenges to inspire others and develop themselves and their families in the coming months. A few have had the most challenging years of their lives, but their ability to bravely search for the silver linings, even if they haven’t quite found them yet, has particularly struck me.
So grab a cuppa, plonk your bottom down in a comfy chair, and have a read through my favourite blog posts of January 2013 thus far in:
January Britmums SEN Round-Up 


Teaching a Visual Learner about Jobs


I haven't written one of our HOME SCHOOLING posts for a while now.
I flexi-school Natty at home one day per week which allows her a quiet day with undivided attention to focus on her reading, writing and numeracy skills. We also do a hearty slice of life skills, such as cooking, laundry sorting, grocery shopping, even bed-making. We then usually fit in a SWIM or a run on the beach. Natty gets a mid-week rest which she so often needs and, quite simply, we love our time together.

This half term the topic at school is JOBS. Natty knew a few of the more obvious roles, perhaps those involving uniforms or the ones that feature in her life like doctors and dentists. The other jobs I chose to focus on today were those I knew she understood and had met, but perhaps didn't know the term for. So here are the activities we enjoyed together:

1) I found and copied pictures of people doing jobs. These are readily available to download free from many online educational sites.

2) I copied 2 sheets of these images. Natty coloured in and drew on one as we chatted about what the people were doing.

3) I cut up Natty's coloured in sheet to make smaller individual flash cards. We labelled each picture with the job title.


4) Natty matched the flashcard to each picture and we repeated the words and talked about what the people were doing again, using Makaton if necessary.

5) We then went to find a story about jobs and cuddled up to read together. Natty chose Doctor Daisy.

6) Finally we raided the dressing up box and Natty dressed in as many different job outfits as she could think of. As you can see from the doctor's afro (formerly to be spotted on Daddy Downs Side Up at a 70s party) Natty had a free range over her choice of what to wear for each outfit.
Mind you, the firewoman's backwards baseball cap is a little unorthodox too.



There is no right or wrong way to teach your child at home. Just choose what they enjoy doing and adapt it. Most of all have fun and enjoy each other's company.

For more ideas such as learning about fruit and veg, shapes, textures, reading and writing skills, have a look at our ACTIVITIES TO TRY AT HOME page.


Open Letter to the Girl Guide Association



Once upon a time, far too many moons ago, I was a Girl Guide.
I have many fond memories from that time and I recall our group being supportive, open, warm and encouraging to all girls. We were proud of the fact we pooled our skills and helped each other where there were weaknesses. I learnt a great deal from my time there which I carry forward into the work I do today.


I'm sure the Girl Guide Association has moved on greatly over the last 30 years, as has the Scout Movement. I expect the activities are even more thrilling, the skills imparted more practical, the events better organised and the ethos even more inclusive.

I'm sure, then, that you are as saddened as I to hear of a less than welcoming Brown Owl. One whose reluctance about accepting a new Guide with a learning disability was aired.

I am always one to think of both sides in every situation, and you may well simply have a woman here who was nervous about whether she had the skills to adapt to teaching a young lady whose learning styles differ, but who expressed those concerns wrongly.
Perhaps she felt she would need additonal training or to alter her working style, and that filled her with dread.
Perhaps she has a personal experience of disability which is painful for her. After all people manifest guilt and remorse and pain in a miriad of ways.
Perhaps her ideas are genuinely not up to what the Guide Movement expects and she is in the wrong role.


Wise words for us all from model Natty Goleniowska who has Down's Syndrome

Either way I feel heavy-hearted, not only for the girl and her family who feel offended, but also for the lady in question, who has clearly been denied the benefits of a truly inclusive society. For inclusion is a two-way street which we were denied growing up in this country many years ago.  Our children's generation are lucky to have friends with learning disabilities, who teach them a different way of viewing the world and the most important lesson of all, which is acceptance, something this lady lacks.
I think the guides she is claiming to wish to protect could teach her much on this important lesson in life.

This situation is not like many I find myself writing to resolve; countering those like former UKiP candidate Geoffery Clark who called for compulsory termination of babies with disabilities (OPEN LETTER TO MR CLARK), or supporting a family whose daughter with Down's Syndrome is being forced out of a school in Malaysia by other, ignorant, parents taking legal action against her.
No, this is a more widespread, insipid kind of prejudice and discrimination but which is thankfully easier to change through education.

I do think a public response would do much to allay the public anger that has arisen from this incident and I await your reply, which I will publish to the thousands of families and professions within our network.

I would also like to offer my services as a speaker and trainer in inclusion and disability for institutions such as yours.

I very much hope that the 12 year old girl in question will feel fully welcomes into one of your groups shortly, as I hope both our girls will be when the time comes. None of should let a blip like this stop us seeking mainstream activities for our children.

I leave you with a post I wrote about the true nature of inclusion, through our children's eyes.
THE SIGNIFICANCE OF THE BIRTHDAY PARTY INVITE



Hayley Goleniowska
Author of Europe's Top Down's Syndrome Blog: DOWNS SIDE UP
Mum of ambassador and model NATTY GOLENIOWSKA, 6, who has Down's Syndrome
Speaker, campaigner, writer, trainer, educator, expert in Down's Syndrome
Facebook: Downs Side Up
Twitter: @DownsSideUp

"Changing perceptions of Down's Syndrome gently from within hearts"

---------------


The Girl Guides later responded favourably with the following statement:


Girlguiding UK is open to all girls and young women. This is one of our most important values – and we strive to uphold it in all circumstances. We are very proud to have many young members with Down’s Syndrome and other disabilities. And we would like to welcome more. We encourage all our volunteers to include young members with disabilities and we have a network of special needs advisors and specific resources to support them in this. 

It is very difficult to comment on an individual circumstance without knowing the details. However, we are very saddened if any potential young member, and their family, feels they have been excluded from joining us. We very much hope to have a conversation with the family and the volunteer as quickly as possible to support them both to find a way to include this girl in guiding – and be a full part of everything we offer. 

We would encourage anybody with concerns to contact our membership support services: msswebconcerns@girlguiding.org.uk 

Julie Bentley 
Chief Executive

Seclusion Rooms: A Parents' Guide

Quiet space, safe space, time-out rooms, seclusion rooms, screaming rooms...

Downs Side Up is a positive space, a place for sharing inspiration and hope.  But once in a while something shocking is so well disguised and dressed in comfortable terms that it is worth making you all aware of. Seclusion rooms are being used by untrained staff and 'sold' to parents as a gentle way of calming overwrought children. Think again...


I asked an online friend and expert in the field, Sharon Paley to write a summary of secusion rooms for us parents. Sharon has been asked to produce evidence at trials when things go wrong when schools use these time out rooms illegally. She really does know her facts. 

If you are at all concerned about your child's school and such rooms, please contact me and I can put you in touch with Sharon or her UK employers, the British Institute of Learning Disabilities (BILD)



I first presented a conference paper on the use of ‘time out rooms ‘in 2004, raising my concern, that there appeared to be the use of rooms in UK schools and care services in response to managing behaviour. In the professional role I was undertaking at that time I had become aware of seclusion being used within school settings. In 2007 I presented a conference paper to a shocked professional audience; the presentation included a short video clip of a child in an American school who had been locked into a ‘time out room’. This video showed Isabel Loffler an eight year old girl with autism as she is videotaped for more than three hours confined in the room, she has also wet herself. It was widely reported in the media that she was put into the room for refusing to complete a reading exercise, the video shows that she bangs her forehead with her fist and tries to climb the walls. At several points in the film, Isabel drops to the floor and stares at the teachers watching her through the window.
The use of time out rooms within educational settings for children and young people has been in the headlines once more in the UK following  a recent report which was  published by Estyn (Her Majesty's Inspectorate for Education and Training in Wales) that highlights continuing concerns with regard to safeguarding issues at Pembrokeshire Council, these concerns arose from the report published in August last year which discussed the inappropriate use of so called ‘time out rooms’. The rooms were in schools and pupil referral units.

In June 2011 another case which centered on the use of so called ‘time out rooms’ hit the headlines when the  Court of Protection ruled that an 18-year-old man with autism and severe learning disabilities who was regularly placed in a padded seclusion room more than six times a day was unlawfully deprived of his liberty . In April 2012 Lord Justice Ryder took the unusual step of lifting certain reporting restrictions applied to cases before the court of protection by naming some of the parties involved in this case. The young man was at a residential school which was reported by the media to charge fees of up to 250,000 GBP per annum, the school was run by SCOPE, a national charity which has campaigned for the rights of people with disability over many years.

On reading the sensational reports about the use of time out rooms in the media most people, especially parents, have the immediate reaction of knowing that the practice of locking a child in a room is at the very least immoral. However when a parent is faced with a professional who is having difficulty in responding appropriately to the behaviour of their child that presents a challenge, it may be that they have agreed to their son or daughter being placed in “time out” as they feel powerless to do otherwise. It may be also possible that they do not fully appreciate what the professionals mean when they suggest ‘time out’ ‘ quiet time’ or ‘chill out time’. It can be presented in a such a sanitized way which gives parents confidence that the professionals know what they are doing. It is also true that for many parents there is a feeling that if they do not agree to a strategy offered to then that perhaps their son or daughter may be excluded from school.

It is important to understand what time out actually is. It is a term used to describe a very specific behavioural technique; you may be familiar with Super Nannies version of this? To explain it simply time-out is
time spent away from reinforcement, usually for a specified period of time”.
Time-out can be implemented using two primary approaches, non-exclusion and exclusion. 
In non-exclusionary time-out the individual is not physically removed from the setting but they do not receive positive reinforcement from other people for a period of time or at least until they desist from exhibiting the behaviour of concern to other people (which may be challenging). Positive reinforcement is something which the person finds to be pleasant; even being ‘told off’ may be a pleasant experience for some children.

In exclusionary time out the individual is at least partially removed from the (educational) environment. Time out does not have to take place in a certain room with special equipment and the child isn’t usually left alone. For time out to be effective as a behaviour change strategy the individual must have a level of understanding which enables them to make the link between their behaviour and the response of time out.  There should also be some way that the young person can reflect on their behaviour and communicate this to someone (in their own way, this may be with symbols or signing) so that they are able to return to the activity/ environment they have left as soon as possible. As a strategy time out has limited use especially with children and young people who have autism or intellectual disability as they often lack the ability to make the connection between time out and any behaviour they may have been exhibiting.

On a personal note I am also concerned that anyone might have an honest belief that a young child or child who has an intellectual or cognitive disability might reasonably be expected to gain control over their behaviour while effectively being isolated from other people and important social contacts. For a child to learn and understand how to manage their emotions and any behaviour which might be seen as ‘challenging’ by other people they are likely to need support guidance and explanation. If a child is isolated from others whenever they exhibit a behaviour which is perceived as ‘challenging’ by others it’s unlikely they will be able to reflect on why they have been left alone, or experience any guidance relating to their behaviour, its actually more likely this is a frightening experience and for any child, for a child with a disability it would possibly be more frightening.

When we consider this carefully it is easy to understand though why some people may almost drift into using a practice when  you are faced with a child whose behaviour appears to be out of control and risky, you notice that when the child is allowed to spend time alone they calm quickly. A potential solution may appear to be a room which the child can use in order to ‘self sooth’, at first being accompanied by staff when in the room. Over time this practice becomes embedded, and it becomes the normal response to the child’s behaviour.  Arguably it is easier to mange the child and the behaviour  by putting them in a room rather than try to figure out what is making them behave this way which would be a more proactive and positive response.It might also be that it feels less risky than managing the behaviour in a more direct manner.  In order to free up a member of staff from guarding a door a catch is put on the exterior of the door to the room. The child is now placed in the room alone with the catch down; in most circumstances if this is a planned response it is likely to be unlawful. It is probable that this would constitute unlawful imprisonment and it might also be considered a breach of that child’s human rights.

Questions to ask…

Does the child access the room or space voluntarily?
Is the child  accompanied by a support worker/ teacher or other person in the room?
Can the child leave the room independently? Do they know how to get out of the room or area?
Is the ‘time out’ part of an assessed and agreed behaviour support plan that includes short term and long term goals?
Can the’ time out’  strategy  be easily implemented in a number of environments?

If the answer is yes to most of the above it is likely that you are using a time out strategy.



Do support staff or teachers or others take the child to the room or space?
Is the child left in the room or space alone?
Is the child is unable to leave the room independently or not understand how to leave the room when they choose to?

Do people watch/monitor the child  from outside the room without entering the room?
Is the practice dependent on a room or space which is available at the place the child  is being educated or cared for?

If the answer is yes to the above questions  the practice is more likely to be seclusion, and may be illegal except in specific circumstances described in legislation such as The Mental Health Act (1983)


It is important to understand what is actually meant when professionals suggest options such as ‘time out’, quiet space or safe space. The questions above may act as a quick guide.  If a child is put into any room or area from which their free exit is prevented this is a breach of their human rights, it may constitute unlawful imprisonment and in any event it is unacceptable practice. There is limited evidence that time out strategies, implemented as part of an overall behaviour  response strategy will have any positive impact on children or their behaviour in the long term, especially when such strategies are applied without any positive behaviour support plan. Indeed it is likely that any such isolation may cause distress and even traumatise the child.

In November 2004 a 13 year old child, called Jonathan King hanged himself while in a time out room at his school in Georgia USA. While this is an extreme and incredibly sad example of what can happen when time out is implemented it is too simplistic to argue that such an event could never occur in the UK. The two examples cited in the opening of this  article are evidence that the practice is occurring in schools in the UK. It is difficult to say how widespread the practice is but it is probable that the two cases discussed at the outset of this piece are not isolated examples.

In my professional experience when I have come across ‘time out’ strategies in schools and other environments they have often been adopted by well-meaning staff who have worked with the parents and carers to agree a way forward. The intent is often well meaning however it is my professional opinion that the use of rooms to isolate children is misguided, ill informed, not based in any evidenced based practice and unlikely to yield any positive outcomes it is also potentially dangerous.



Wales Audit Office (2012) Special Inspection – Implementation of
Safeguarding Arrangements- Pembrokeshire County Council. Cardiff Estyn . Care and Social Services Inspectorate Wales (2011) Joint investigation into the handling and management of allegations of professional abuse and the arrangements for safeguarding and protecting children in education services in Pembrokeshire County Council. Crown Copyright.  Wales







Natty's Big Sister Starts a Blog

Mia is 8, is pretty artistic and loves writing but is reluctant to do homework, so we have channelled her creativities into a blog. 

She's chosen to call it Over 8s. 

She designed the background and chose the fonts and colour schemes.

She is going to write about her favourite recipes, poems, jokes, her love of ponies, her puppy Pippin, her sister Natty and sometimes Down's Syndrome.  She'll show you her pgotography and her animation films. It will all be her own work.

Her very first blog post was a book review of Sam's Top Secret Journal. An adventure story that features a character who has Down's Syndrome, Sam. 

Do pop over and see what you think. It's early days yet, but it's a start. Go Mia, go!

Top 10 Tips to Help Your Child Learn to Swim

We are a family that loves to swim. The girls are little mermaids. Swimming boosts self esteem, is a healthy form of excercise, is fun and helps develop breath control and lung capacity, essential for speech development would you believe!

Learning to swim

Admittedly we never manage to make it a weekly affair. Snotty noses, burst ear drums and chest infections sometimes get in the way. Or I just can't face trying to coax Natty in and out of clothes and costumes like a reluctant and wriggly wet eel.

But we go as often as we can and until now we haven't signed the girls up to formal lessons, preferring to let then learn through play and our example.  Mia swam for the first time on a hot holiday where she was trying desperately to copy some older children, splashing for hours per day in an infinity pool. Natty in her turn has always been motivated by trying to be like her older sister. Never underestimate peer pressure.

Recently Natty swam a width of the pool for the very first time, unaided, without help or armbands. Yes alone. She slid in from the side, swam across and climbed out the other side. Admittedly she didn't come up for air and did all of it underwater, but we can work on breathing later. 

Since that moment we have signed her up to a local class, which she adores. She's coming on in leaps and bounds with a fabulous teacher who believes in her.

We found that the Sevylor Puddle Jumper Floatation Device  helped Natty learn to swim


















So, here are our tips to encourage your child to swim:

***Never leave a child alone in water, whatever swim aid you are using.***


1) Start early

Introduce your baby to water as soon as they are well enough to avoid fear later on. I know they say this isn't necessary, but I waited for all the jabs to be administered first.

2) Play in the bath 

Don't be afraid to get children to blow bubbles into the water, submerging their faces for a few seconds. Make up silly songs, pull funny faces as you do the same.

3) Use a swim nappy

There are disposable or re-useable swim nappies available with cuffs on the leg to prevent contamination of the pool, special trunks or swimming costume with built-in continence support (these are available for older children too). Natty always seemed to prefer doing a poo in water until recently, be it bath or pool, so this was essential unless you want to be barred from your local pool!

4) Choose a reliable swim aid 

This is essential to help you both relax until your child is confident to move to the next level. We tried the suits with the floats built in as well as the little jackets with pockets to put foam floats in, but I found it hard to grab Natty round the waist to lift her wearing these. We eventually discovered the  Sevylor Puddle Jumper Floatation Device (pictured above). Utter brilliance! 

It has armbands and a tummy float but it's all joined together and does up at the back. The child cannot sink, floats face up and also cannot run away from you ripping their armbands off as they go and jumping in at the deep end with you hurtling after them, terrified! They cannot remove this device.
One day we left our Puddle Jumper behind at the pool and someone took it. Rather than buy a new one it was the boost we needed to move to the next step, which was simply armbands. Choose a variety that roll on simply, or inflate whilst on the child's arms. Natty's arms are short so we always had to use a very small pair, 6-12 months.

5) Removed the armbands for a few minutes at each session 

We pushed Natty through the water from one adult to the other. We let her play freely in the children's pool so she could get used to how her body felt in water without buoyancy aids. 
We then built up the distances slightly. My neighbour was the one who encouraged me not to leap forward and grab Natty as soon as she began to sink. This is hard to do as a nervous, protective parent, and could be the point you need an instructor to help if you are feeling worried about 'letting go'. She struggled for a second or two and then, hey presto, she found the strength and energy to make the extra effort needed to pull herself forward the required few centimetres to reach me.

6) Always take toys 

Plastic cups and interesting objects that float distract your child and make swimming time fun.

7) Protect ears

Wax ear plugs and neopreme headbands are available if your child hates getting their ears wet or is prone to ear infections.

8) Protect eyes

A top class pair of goggles are a must. We bought a pair more akin to a snorkel mask, that keep the whole eye area dry as Natty seems particularly sensitive to chlorine. 

9) Little and often 

Keep your swimming sessions short. This is better than long sessions where the child gets fed up and tired

10) Praise 

Never push your child to do what they aren't comfortable with. Remember to have fun! That way your child will learn almost by accident. Be patient. It takes time.



There's a Chihuahua in the House!

I'm not saying rush out and buy a puppy, far from it.

 



Such an animal is a very serious commitment and if little one is tiny and often poorly then the extra hassle and hygiene worries would have tipped me over the edge. Wee and poo accidents on the floor near a crawling toddler would make me shudder. Finding time to train and walk and play with a new pet amidst hospital appointments and stays would have caused additional stress.

BUT, we are in a good place now (touch wood), the heart surgery is over, the appointments are few and far between. Natty knows not to eat a tail or a poo. So we took the plunge into puppydom.

I have observed the most unexpected upside to have Pippin in our house. Natty is no longer the youngest, smallest member. She can no longer grab most of the attention by means fair or foul. The dog has been a learning curve for her, at first nervous, now able to feed and pick him up, even attaching his lead today. I caught her carrying him to his toilet, saying "do poo poo here Pippin." Now she is the teacher.

Something has switched on in Nattys head. Another leap has been made. And suddenly she is conversing differently, full sentences are flowing. Tonight she used her knife and fork perfectly, bedtime was easier. It's as if she now feels more grown up because we have a new 'baby' in the house.


My Mummy and Me Magazine Article

Downs Side Up feature for the first time in exciting parenting publication My Mummy and Me Magazine this month. 


Check out our 3-page article on pages 24, 25 and 26, available as a free online download or a paper copy in the Liverpool area. We talk about what to say when a baby is born with Down's Sydrome and chat openly about our feelings at that time of transition for us.



See the other articles I have written to dispel myths and gently change perceptions from within hearts in our Published Articles Page
Would you like Downs Side Up to pen an article for your publication? Contact me on downssideup@gmail.com




Kate Stars in the Undateables

READ KATE'S UPDATE ON THE PROGRAMME HERE


Last year I had the very great pleasure of meeting an inspirational young woman Kate at the BILD annual conference. 

Kate works full time for the British Institute of Learning Disabilities and lives independently with support. Kate has Down's Syndrome, a social life you would be proud of, a house and mortgage, and told me how her Mum worried about her when she left home, but that she's just fine. 

Read here about how meeting Kate and others really was life-changing for me.



Kate was recently chosen to take part in a TV show called The Undateables, a kind of dating agency programme for those with disabilities and learning disabilities. 

Whatever you think of the programme (I for one can't get past the show's title) I urge you to watch to support the incredible Kate. The show airs at 9pm on Tuesday 22nd January. I just know Kate will shine and be an ambassador for us all.

She was also interviewed on ITV This Morning, Tuesday 8th January by Phillip and Holly.


Kate at home on the This Morning sofa 

Kate will love this experience and will change a few perceptions, I am sure. I can't wait to find out how the dates went Kate x

Link between support and attainment at school in children with Downs Syndrome



Natty's Learning Support Assistant is an amazingly driven woman. 
She is currently doing a degree in child development and has chosen to specialise in the education of children with Down's Syndrome for her dissertation. She also writes a brilliant blog called Special Education Matters.

She is collecting data from parents and has asked if any Downs Side Up parents would like to be involved. She aims to find if there is any correlation between support offered at school and the achievements of our children.

The initial survey only takes 10 minutes and is completely anonymous. Click here to take part.

Many thanks in advance for your time.


Can't Care, Won't Care - Lloyd Page

Last year I was honoured to meet campaigner, speaker, writer and journalist Lloyd Page at the British Institute of Learning Disabilities Annual Conference. 

Lloyd is a wonderfully warm man, who helped me greatly with my nerves as I prepared to deliver my keynote speech. He also happens to have a learning disability himself. The experience of meeting Lloyd and other movers and shakers was so life changing and inspirational that I wrote about it here in Innovation, Imagination, Inspiration


Lloyd rang me this morning to let me know that he has an article  published on the Channel 4 blog. It is called Can't Care, Won't Care: Has the NHS really changed? And tackles the subject of Death by Indifference. The startling reality that people with learning disabilities are actually dying in our hospitals simply because their needs are not being understood.

This is a subject I am passionate about, but Lloyd writes about it in the most powerful way imaginable. Please read and share.