GIVEAWAY! Twisty Droppers and Handy Scoppers

I've never given anything away on my blog before, but the lovely people from Learning Resources sent me these wonderful TWISTY DROPPERS and HANDY SCOOPERS to try out, and there were more than enough to go round... 





So we are giving 2 pairs (one of each toy) away on the Downs Side Up Facebook page.

As recommended by ccupational therapists, they are a bright, fun way for your child to improve their fine motor and co-ordinations skills and chunky enough for little hands to get a grip on. The droppers are like a large pippette with a round soft ball at the top to encourage children to squeeze water up into it. They can then release their grip and drop water out. Ideal for bath time or water table play.

The scoopers look like plastic scissors with two semi-spheres on the end with holes in. Children open the scissors and scoop up water or sand which would then slowly seive out through the holes.

Two winners will be chosen at random on Monday 30th September 2013 at 10am in the morning. Simply pop over and LIKE the Facebook post and write your reason for wanting these wonderful toys in your home or school setting.


You can visit the Learning Resources website 
here for more wonderful ideas.



We were given the toys to test. This is not a sponsored post.

Champagne buckets full of love and ladlefuls of tears

Way back on Mother's Day this year I sat alone in my kitchen and sobbed at the news that a panel of judges had chosen me as one of 10 bloggers who had been noted for their Outstanding Contribution




I cried with pride, I cried with surprise, I cried with tiredness, I cried for the way we have yet to go.

The months passed and I grew excited for the glitzy, star-studded evening at the Royal Kensington Garden Hotel, hosted by Sally Whittle and her team at the MAD Blog Awards, Tots 100 and Parentdish.
As the day dawned, I dusted off my fave shoes and dress and I caught my train from Cornwall to London. I revelled in the quiet solitude and absence of internet. It was enforced relaxation.

I was looking forward to meeting some of my favourite bloggers again, my gurus and inspirations, and getting to know new ones over a glass of wine. The prospect of finishing a sentence without interruption is always an exciting thought as a parent too.

But my mind could never move far from Jennie Henley of Edspire. I wondered how she would find the strength to attend the event which she was doing in honour of Matilda Mae. I worried about her health as she faces a miscarriage. But I knew she would have friends to hold her up as she collected the award we all hoped so fervently she would win, but I worried none the less.

After a freshen up on arrival in the Big Smoke, I met lovely supportive Kate of Kate On Thin Ice in our hotel bar and we shared a little snifter and an appraisal of all that is great about blogging before catching a taxi to the venue together. (Well, it's hard to walk all of 500 yards in pink patent stiletto heels... )

As we entered the foyer my nerves rose as I remembered my inability to match the real names to the blog names and faces as well as avatar images of all the writers present. I am, after all, the one who asked Sally Whittle if she was a blogger at the Legoland Winsor day out. I hang my head in shame. (Sorry Sally!)

My tactic of simply gushing "Hello daaarling" at everyone worked though, and the lovely young bloggers who we joined just giggled at my cluelessness. Someone made my evening by saying I could be excused my failings as I'm so nice!

I really enjoyed the company of the funny Sarah Grenglish and WallyMummy who write Just a Normal Mummy and the oh so sweet Filipa from Gourmet Mum in the bar and I was so honoured to meet Actually Mummy's beautiful family and got chatting to her gem of a husband. The conversations about changing the world of paediatrics had started.



It was time!

Time to go to the Awards amongst a bussle of excited chat about hair, shoes and dresses and make-up along the red carpet (and that was just the men!) and onto a photo shoot  and a glass of bubbles with the simply gorgeous Dr Ranj from CBeebies.

I took the moment to whisper in his ear and ask him if he was a real doctor (he is) and tell him that Downs Side Up works with the NHS to improve the delivery of diagnosis of Down's Syndrome. No time the present to push for that change...

Unfortunately the leaning forward and whispering looked like I was accosting the poor man. Ooops!










I was delighted to be sitting next to Michelle from Mummy from the Heart, who is gorgeous inside and out, a real hoot, and who made me eat more risotto "to soak up my wine." Very sensible. We giggled with Tom, Dr Ranj and Vanessa from HPMcQ, who I described as a priceless cross between Anthea Turner and Amy Winehouse.
I was completely rubbish at taking enough photos on the night because, well, I just got stuck in chatting mode, but here's a selfie of Michelle and I.





Photography by Tom Arber
The Ceremony began and so very many of my favourite bloggers won awards, you can read the full list here, including two other Cornish bloggers Coombe Mill (Best Family Fun) and Frugal Queen (Best Food Blog) and fellow Down's Syndrome advocate Tom from The Futures Rosie who took home Best New Blog. I couldn't have been prouder. I stood to clap as he collected his trophy which he dedicated to Rosie.




Look What Love Has Done
The final category of the evening came, that of Outstanding Contribution and we were all stunned into silence which very quickly turned to tears and quiet sobs as a beautiful film was shown highlighting the work that each and every one of those women had selflessly done. I couldn't believe I was named amongst those who had fundraised on a gigantic scale, travelled the world helping others, given of themselves for free, supported women to get through the most difficult of times, raised awareness of SIDS and other medical conditions, issues surrounding premature birth, brought political fights to the fore, campaigned in parliament, the list goes on. 


                       


I hadn't set out to do any of that in the beginning, but Natty, Downs Side Up, the Down's Syndrome community had taken me on its own, organic journey. 


All photography by Tom Arber


Instead of simply reading out the winner's name, we were then all invited to the stage.

Alexander Residence because her videos are hysterical and THAT’S the way to raise money for charity. Penny works very hard on her blog and putting PRs in touch with other bloggers. She has a wealth of knowledge and is never too busy to share it.
Childcare is Fun because Fiona’s blog offers a free parenting advice service through which Fiona tirelessly answers dozens of queries a day. When she’s not blogging, Fiona organizes charity fun days for Save the Children, runs marathons for charity and is helping to organise a fundraising programme for baby Noah, who was born with Spina Bifida and hydrocephalus.
Dorky Mum because no cause is too small for Ruth to promote on her blog, and she always does it so eloquently. Ruth’s constant, unrelenting belief that change can and will happen is joyous, and her support of campaigns from Save the Children is deeply inspiring.
Downs Side Up has worked miracles for awareness of Down’s Syndrome in a very short time. Hayley has a gentle way of saying important things that help change perceptions, making us feel a part of her fight.
Edspire because in the face of terrible loss, Jennie has found the strength to support other families by raising awareness of SIDS and beginning to fundraise for charities that help families suffering the loss of a baby.  Beyond this, Jennie continues to be a fantastic mum to toddler twins, with inspiring crafts and fun activities.
Kate on Thin Ice because Kate is an understated force for change, quietly boosting the mojo of Mums via her blog and regular Twitter chats and parties, and regularly helping to raise awareness for charities online.
Mummy from the Heart because she goes out of her way to support and offer advice to new bloggers, on her blog, and through conversations on Facebook and Twitter. A busy Mum, Michelle isn’t afraid to step back from blogging to keep a healthy balance with her real life and family.
Not Even A because Kylie is an absolute rock for Mums in the premature baby community, generous with her time and advice. Kylie campaigns tirelessly for Bliss and baby charities to raise awareness of neo-natal care, and has inspired bloggers in the past year by overcoming huge adversity and still sharing support with other members of the community.
Patch of Puddles because Merry is helpful and supportive to so many in the blogging community, especially those who have lost babies.  When she isn’t home-educating her children and running a business, Merry works tirelessly with charity, bringing together bloggers to sponsor children with World Vision.
Thinly Spread because Christine is the parent we’d all like to be – intelligent, unflappable, and barely a hair out of place. But also because Christine balances blogging and blog activism perfectly, producing amazing words and gorgeous images into the bargain. She’s like the wise brown owl of the blogging world!

The tears flowed. Some held it together more than I, but to the stage we went, all conscious of Jennie, how much more emotional than the rest of us she would be feeling. I thought of Dorky Mum and Kylie from Not Even a Bag of Sugar who could not be there. I could feel their presence too. I thought of all the causes we held close in our hearts, the lives of all those that had been touched along the way.

As they read out Jennie's name as the winner, I watched her beautiful face crumble into what looked more like grief than pride, for that award must have been so very bitter sweet for her, her husband, her twins. We all stood, holding hands, hugging, touching shoulders, in a moment of shared consciousness that is hard to describe. It was like a group hug that sent a special force back towards Jennie. 

Then another surprise. Another reason for more tears. 
Every one of the writers in that category was to receive a special award, a precious glass reminder of why we have to carry on, to be the change we wish to see in the world for our children.



Thank you to everyone who made the evening so very special. It is one I will never forget. Thank you to everyone who has read and loved my blog. Thank you to everyone who voted for it. Thank you to everyone who strives with me for a fully inclusive society and who works for better provision for childen with SEN in schools.  Thank you to those who have dropped their fear of Down's Syndrome and instead swapped it for marvel at the beauty of Natty and her fellow models with disabilities. And thank you to everyone who shares my shock at how our civilised society can allow terminations up to and including during birth for babies like my daughter, for hers is a life worth living.



Then Came the Fun Part
Photography by Tom Arber (with the exception of the blurry ones that I took on my phone!)

Afterwards there was a more relaxed feel to the evening. Wine flowed and music played and some even found their way on to a bouncy surfboardy type affair. I floated happily from one writer to the next and was particularly fond of my chats with beautiful Cakes Photos Life and her husband, Rock Chick Alice My Son My Life My Way, the superbly, hilariously tipsy Childcare is Fun and the completely genuinely caring My Two Mums. Actually Mummy looked divine in a furry leopard print onesie, the hilarious antedote to her earlier floor length gown.

And then there was Mr Mozzarella, an impossibly bouncy chef from the Just Eat adverts who seemed to have more than just a passing penchant for blogging Mummies all dressed up to the nines, pictured above with Louise Turner of All The Camping Gear. But the giggles were a welcome contrast to the high and draining emotion of the day.

I returned to my hotel at Pumpkin O'Clock, happy, uplifted, tired, full, extremely proud, feeling inspired...  and with a glowing bruise on my elbow caused by a dancing collision with Mr Mozzarella's ladle and the note to myself never to wear unfeasibly tight magic underwear again, for it riseth up.




H x







Humiliatingly Glorious MADSday

This evening sees the blogworld's version of the Oscars. The star-studded MADS takes place in a swish hotel. We've all dug out/ panic bought some finery and they will ply us with exquisite food and a little wine and then the excitement of the awards, recognising the excellence of the work of everyone present.

Well if you all think that sounds like my life is one long glamorous party, let me bring you down to earth quick sharp.

This morning just after hubby had left the house I began 'my eblutions'. I had settled comfortably on the loo to check my emails on my phone (we all do that, right?) when the house phone rang. At 8am it could only be my husband. 

'Get the phone Natty darling.'

Natty picked up the radio phone in our bedroom. 

'Hello yes. Yes. It's Natty.'

'Is it Daddy?' I called from the smallest room in the house.

'Yes!'

Her little bare feet pattered into the room as she continued into the handset, 'Mummy is doing a poo poo.'

I rolled my eyes and grabbed the phone. 

'Er, Mrs Goleniowska, it's medical Delivery Services. I have a toilet step for Natty. Will you be there for the delivery?'

There was no point trying to bluff or explain or dig myself in deeper. 

'Yes, someone will be here.' My voice echoed in only the way a tiled bathroom can allow.

Humiliation complete.







Campaign Bloggers

Blogging with Heart, 

from the Heart and for Support.



It this year's BritMums Live I was honoured to be part of a discussion panel comprising Annie from Mammasaurus, Kylie from Not Even A Bag of Sugar, Liska from New Mum Online and I (Downs Side Up). We joined to share our own takes on the subject, for what proved to be an emotional session for the speakers and those listening. (There were a few tweets at the time about 'dust in people's eyes'.) It seems that there are many differing motives for writing with heart, and that this inspiring variety of blog achieves more than at first meets the eye.

Then last week Jennie Henley who writes Edspire and I were asked to join Jenni Murray for a Live chat on BBC Radio 4 Woman's Hour on a similar topic: Campaign Bloggers
You can still listen to the interview here at 26 minutes.

The BBC researcher was wonderful and we chatted at length on the phone. She asked me to think about why Edspire and my own blog were so successful, how they helped us and others, what brought people back to them? She asked about exactly how Downs Side Up was conceived. She asked what other projects the blog has led to. She asked about the blogs I read for pleasure and why. Of course there wasn't time to talk about all of this on air.

So, for those who couldn't make the session at Britmums, for those who write a blog from their heart, and for those wanting a fuller picture than Woman's Hour had time to allow us, I have tried to summarise what Campaign Blogging is all about.


Why?

There are as many reasons for starting a blog of this nature as there are stories in the world.
  • Annie described wanting to talk through a particularly taboo subject from the safety of her blog, and in doing so she reached out to other women in the same situation who felt alienated, misunderstood and lacking in support. I recall Spencer from A Dad Called Spence saying that if you have changed one person's life through your blog, then it is a success, and Annie's has certainly done that many times over.
  • Kylie also described a lack of support when her son was born prematurely, and her main motive for blogging was as a way of gaining support for herself through that intensely difficult time. Of course she helps thousands of premmie parents now and works for Bliss Charity but that, she claims came afterwards.
  • Liska is a selfless blogger and a shining example of one of many who write to pull others together, to keep the memory of her friend Multiple Mummy alive. She helped organise the #Healing4Kerry time of thought and prayer that many of us joined in, and this must have given comfort to Kerry before she died and to her family ever since. Never is the power of the online family more keenly felt than at times of tragedy.
  • Jennie also writes to create a legacy for one who was taken too soon, her daughter Matilda Mae. She recalls that the writing all started as a way of working through her grief, and in doing so not only does she spread awareness of SIDS, but fundraises tirelessly for the Lullaby Charity. 
  • For me, Downs Side Up was born out of a realisation that my perceived knowledge about Down's Syndrome was completely wrong when Natalia was born. Fear and ignorance made me afraid to love her. I began writing so that no other new parents would ever feel that desperation, to buy them bonding time so to speak, by gently changing perceptions of the condition from within hearts. I spent many evenings researching online following Natty's birth. There weren't any blogs about family life with Down's Syndrome back then. In fact most of what I read was outdated and downright depressing. The charity sites were a font of knowledge but remained neutral in tone. When the time came to write a blog, when Natty had started school and I had time on my hands, I decided to write about exactly what I wanted to find in the early days myself, a positive, realistic portrayal of everyday life and a good dollop of information, resources and ways to get support. I was surprised to find, like Jennie, just how cathartic and healing blogging was. There were, and still are, occasions when I cry as I write, working through some old emotion, guilt or fear which often lies unrecognised until the fingertips hit the keyboard.

Readership?

So who reads these high profile campaign blogs?
  • Being able to share blog posts with family and friends has enabled me to explain feelings that are hard to put into words at the time, or indeed face to face with someone. This works both ways of course, because a blog reader can sit in her pyjamas, with tea in hand, in total privacy and read, at any time of day or night and cry, shake, shout, smile, and whatever she feels remains private
  • I guess that some blogs remain niche, with a small readership and a very specific topic range. I always assumed that Downs Side Up would be read only by family members of those who have DS, and was pleased to find professionals joining the ranks and even more suprised when the majority of readers turned out to be parents with no experience of Special Needs or even those without children at all. This is the point where a campaigning blog becomes powerful. If you can make it relevant for all then you are drawing people in and changing the way they think with a smile or a chuckle or a tear or an ahhh with a tale they can relate to.
  • Again the subject matter of the blog will determine how readers interact with the writer. Some are showered with supportive comments, for others readers prefer to contact the writer privately for support, or indeed to remain anonymous. I was taken aback at Britmums Live for example when a handful of women spoke individually to me to one side about their experiences of testing, screening, terminations, losses and babies and how reading this post or that had supported them or a friend. Unless I had met them I would never have known that, and so we must continue to write the way we do, for we can never sure of the extent of the positive impact it is having on the lives of a significant few.


What makes a successful Support Blog?


As we identified, a successful blog can be one that helps just one person. But what keeps someone coming back to the blogs they know and love?
  • For me the personality of the blogger has to shine through.  I want to read posts from people I would genuinely like to share a coffee or a glass of wine with. Their motives have to remain clear and they must have integrity. It's the blogger who can't tell you how many 10s of thousands of visitors they have each month because it doesn't matter.
  • Many campaign bloggers seem to keep their blogs clear of  too many reviews, sponsored links and advertising. This was my pledge to help the message remain clear, although blogging and the associated travel and outlay leaves many very out of pocket. There is nothing wrong with making money from your blog and perhaps it is simply a balance I haven't managed to strike yet.
  • An appealing campaign blog has mass appeal even if the campaign itself may only affect a few. It all about a balance of posts that capture interest. It will be well written and visually enticing.
  • If you are fundraising, events need to be unique and different and easy for all to join in and give.
  • Although many blogs deal with subjects that would make us all angry I think there is no faster way to make someone switch off to reading than prolonged ranting. Drawing people in to walk alongside you is always more effective than demanding them to do so. It's like the story of the Wind and the Sun having a competition to make a traveller remove his coat. The gentle Sun wins every time over the blustery Wind. If you are working through some emotions that make you angry and blogging helps you deal with that its worth doing just for yourself. You can always hit the delete button later...
  • The most powerful blogs with heart draw people together, through linkies, round-ups, guest posts, interviews, charity events, trips, trending hashtags and so on to make people feel part of a shared goal.
  • I try to visit and support as many other blogs as I can, but I prefer to write without influence from others to keep things unique and fresh. If I am writing about a particular topic I won't read any other blog on that subject until it is finished.


Where do we go from here?


The blog often feels like a hub or central core that all else eminates from. It is an organic force that goes where it is needed.
  • Charities have realised that bloggers are an incredibly powerful tool for spreading their word, raising funds and supporting others. Much of the writing I do is now for charitiy blogs as well as my own. 
  • Then there are articles for newspapers, journals, interviews with the media and requests for quotes and comments. Bloggers are beginning to be considered as writers in their own right.
  • Bloggers with heart are driven to reach out to others and often find themselves doing training or public speaking in workplaces and schools to achieve that. Again, a warm/strong/memorable personality is key.
  • Politicians and parliamentary activists are getting bloggers on board too. The Saatchi Medical Innovation Bill and Disability Abortion Law are two campaigns that I have recently been asked to be involved in.


Who do I read?


Just Bring the Chocolate because she keeps it real.
Pippa Story of Mum because she got me doing craft activities at 43.
Aunty Her Melness Speaks because she is wise and warm and supportive and consistently right. I think she'd tell me off if I did something wrong.
Wally Mummy at Just a Normal Mummy because she says 'vagina' a lot and it makes me giggle like a school girl.







Encouraging Your Child to Drink More Water

Natty, like many children with Down's Syndrome has struggled with constipation over the years. Despite eating like a fruit bat and having a Mummy who makes biscuits and soups with things like linseeds hidden in them, she is a slow and reluctant drinker and we still had to resort to seeking additional help.


Meet our fluffy Pee and Poo toys

A powder called Movocol Paediatric was prescribed by our GP last year. This laxative is added to water and together the liquid makes the stools softer and easier to pass. And boy did it do just that! We panicked and stopped using it. We found an alternative called Lactulose which seemed to work fine with a small daily dose, although Natty would still go many days between movements and it could be very painful at times.

Wanting to make sure we were on the best path, I requested an appointment with a BOWEL AND BLADDER SPECIALIST (ask your paediatrician or GP to refer you if you have concerns) which came up last week. After all, being contipated is not only painful, but leads to sluggishness, tiredness and a bad mood.

I know how hard it is to come by fabulous information sometimes, so I will share all her invaluable advice with you.


Let your child choose a cup they like.

  • Apparently Lactulose absorbs water from the body not the drink it is contained in, so for a child who struggles to drink enough that could have a dehydrating effect.
  • Movocol is not a bulker and will not stretch the bowel or cause longterm harmful effects.
  • Drinking plenty of fluid (water, dilute juice, milk) is key. I was astonished to find that a child of 7 should be drinking 1.2 litres per day. For a chart for all age ranges have a look at the BBC Good Food Guide to Drinking Water here. We weren't managing anywhere near this, but are getting close now.
  • Buy attractive cups and beakers and focus on them as your child drinks rather than simply asking them to drink. I bought a couple of sparkly Doidy cups, 2 patterned screw lid cups with a straw, Camelbak make a great version, (don't use sports bottles that encourage your child to jutt their jaw forward, for an explanation read Terrific Tools for Talking here), a pack of funky straws and a no-spill Munchkin sippy cup. You could try a funky tooth brush holder with floating glitter and fish as a beaker too.
  • Take the cup everywhere and offer your child a drink whenever you can.
  • Encourage your child to sit on the toilet twice a day after meals. They must be comfortable (we still use a padded child toilet seat) and a foot step to raise their feet so that ideally their knees are above their hips.
  • I cannot recommend the Rock and Pop method highly enough. Place your hand on the child's lower left stomach (or encourage them to do it themselves), let them lean forward and relax for a few seconds, then ask them to sit back, push and... pop. It works 9 times out of 10.
  • Make the experience relaxed and fun. Keep books or stickers in the room.
  • Encourage your child to blow bubbles or play a small wind instrument such as a plastic flute or similar whilst on the toilet to strengthen abdominal effort.
The specialist is also able to advise on other aspects of toiletting, positioning and so on. For help with steps and handrails, ask to see an Occupational Therapist.



For more information and a baked bean recipe with a laxative effect, read 



Contact the Childhood continence experts ERIC for more advice, leaflets, 
wall charts and continence products.