Downs Side Up

Silent Sunday

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

Constipation and Soiling: A Pain in the Backside.

Contact the Childhood continence experts ERIC for more advice, leaflets,

wall charts and continence products.

Natty Holds Just Bring The Chocolate Hostage, (Little Minx)

When you enter the realms of parenthood, it comes with the territory that your children will embarrass you sometimes. Perhaps not as much as you will them one day on the teen horizon, but still.

Having the toilet door burst open when you are inside is a daily occurance.

Having iPhone photos taken of me in the shower is becoming increasingly common.

Oh yes, and then there was the iPhone video that included a rummage through my knicker drawer.

I think one child standing in a posh restaurant chair in a Portugese Harbour, lifting her skirt and doing a poo when she was about 3 years old is right up there (I will not divulge which one) as is the episode of diahorrea in a BMW showroom.

However Natty's recent actions can be more described as mortifying, rather than simply embarrassing. The repurcussions effected a whole family for many hours, and not even our family.

Here's what happened when Natty tried to hold Just Bring The Chocolate Hostage...

The wonderful, gifted, inspirational, brave and tireless Renata proved all of the above, by packing her 3 children and all the equipment Dominic needs into a car and driving by herself the millions of miles down to Cornwall to stay with us. And all of that after a GOSH appointment in the morning! *in awe face*

The fun-filled 3 days were amongst the best of our summer, with all 5 siblings mucking in together and nobody making any special allowances for Dominic or Natty, who keenly felt a sense of rivalry in the cute stakes. It was very funny to observe.

I was proud that Dominic thought our house was the most wheelchair-friendly he had known.

I was excited that we made a fab beach camp and enjoyed the sand and sea and picnic and chips together.

Elliot's energy and zest for life was magnetic.

I was touched to be present when Dominic stood for the first time ever.

I loved every minute of our dinosaur hunt around the woods.

It was wonderful watching the big girls Mia and Lilia share stories at bedtime and revel in the female company together.

It was wonderful to get to know that amazing woman Renata a little better.

I was heartened to see the sheer enjoyment Dominic got out of a lunch of one olive, or a Calipo lolly.

I was less proud however of my bullet-hard, lipsalve-tasting vegetarian jelly trifles. (Even the chickens rejected those!) The less said about those the better however. Thank you Elliot for your honesty ;)

Still, the 3 days came to an end and it was time to pack away. Renata loaded that car while I chatted to Dominic in the kitchen. Our woods walk and pizza lunch had delayed her planned leaving time slightly, and she had a long journey ahead of her, all the way back to St Albans. Time between Dominic's meds and feeds are carefully calculated. So we pressed on. She joked that as she always travelled with so much kit, we were bound to be finding and shipping things back to her for weeks.

The children were then loaded into the car and we assembled to wave goodbye. It was 3.30 pm. She had at least a 5 hour journey ahead of her.

Renata made a final trip to the kitchen to pick up her care keys. The car keys?

"Has anyone seen my keys?"

"They are on the side aren't they?"

"No."

There followed a quick look around the obvious places, handbags, tables, in the car itself.

No keys.

I rang Bob who had popped out.

"Have you seen Renata's keys babe?"

"No."

When Bob returned half an hour later we were still looking.

We had moved from the They-Must-Be-Somewhere-Obvious stage, to the I-Must-Have-Put-Them-Somewhere-Silly-in-an-Absent-Minded-Moment phase.

We retraced our steps after the walk. Renata may have carried them in her mouth to the living room when she put Dominic on the sofa.

The sofa was dismantled. We searched under, over and behind it.

At this point I began to enter the I-Wonder-If-Natty's-Had-Them phase.

"Natty, have you seen Renata's Keys?"

"No."

"Natty, where are Renata's keys?"

"I don't know."

The mood began to become more desperate. An hour had passed and they were either somehere REALLY silly or Natty had hidden/thrown away/destroyed them. In the past if she has hidden something she has always taken me straight to it.

While Renata took all the suitcases and bags out of the car and emptied them on the drive, then lifted every seat and rumaged beneath (Oh God, this was getting serious) I decided to up the motivation with Natty.

I peeled her off the iPad film she was watching to keep her in one place while we looked, I got down to her level and looked her straight in the eye. Using Makaton to back up the message I said:

"Natty, Renata needs her keys. A big set with a rabbit on them. Where are her keys? Renata wants to go home."

"In Mia's room on the shelf."

BINGO!

Daring to hope, we dashed upstairs and searched the very full and untidy bookshelves. Nothing.

"Natty, where are Renata's keys?" My voice was trying not to portray my worry, trying to remain jolly and encouraging.

"In my room up high."

Another mad dash. Another fruitless search.

I recall whispering to Bob "What are we going to do if we never find them?" I didn't want to panic Renata but I thought couriers and spare sets might be on the cards.

We then enetered the We-Must-Leave-No-Stone-Unturned phase.

The older children were promised vast quantities of chocolate (Renata really does Bring The Chocolate when she comes to visit) if they found the keys, and we all set about searching the house from top to bottom.

Yep, in the bins.

In every cupboard, every drawer.

Under and in every piece of furniture.

The garden was search inch by inch in case Pippin had taken a shine to the fluffy rabbit key fob.

Nothing.

Renata brought a hot and tired Dominic in from the car, her face slipping to worry now from its usual positive beautiful smile. I felt terrible. I continued to hope she had put them in an unusual place, but it was looking less likely. I began to pray I hadn't moved them myself. Did I pick them up and move them earlier when Natty was playing with them? Did I?

I began to retrace my steps, re-searching in more detail. This time emptying each drawer that I had already searched. Each drawer apart from the one at the bottom of the wardrobe int he guest room where Renata had been staying. I'd missed that one.

I tugged it open. It was stiff from lack of use.

There, lying slap bang in the middle of the drawer was the enormous bunch of keys and the attached red rabbit!!!

I screamed, snatched them in my hands and ran downstairs. I couldn't help crying. It was Natty's fault, my fault, our fault that Renata and gang were so delayed. 2 and a half hours had passed.

We all hugged and sat down to a cup of sweet tea and some serious chocolate and we mulled over what on earth had happened. What had gone through Natty's mind?

Had she hidden the keys to make her friends stay longer?

Had she put them in Renata's room to be helpful?

Had she put them there so long ago she had forgotten doing it?

Did she not understand what we were looking for?

Was the frantic search too much fun to cut it short by finding the keys?

I guess we will never know.

But I do know that if your child is going to hide the keys of anyone and delay their journey home by 2.5 hours, thus making their ETA midnight, then it should be one of the UK's top SEN bloggers, for at least they understand and don't cut all ties with you.

Oh, and now we hang guests' keys from an unreachable hook by the way.

Natty is a Face of Kinder '13 Finalist!

thank you!

to everyone who voted for our little role model to be the Face of Kinder Chocolate.

23,000 children entered the competition and Natty has been anounced as 1 of 50 finalists!

So you may see her face on your packet of chocolate yet, another step for ad inclusion, and a cry from the rooftops that Down's Syndrome is beautiful.

The winners will now be chosen based on a memorable moment question.

I wrote that mine was the first time Natty held my face in her hands and said

"Mummy, you happy me", her own way of saying "I love you" to begin with.

My Superheroes for #LDWeek13

superhero (ˈsuːpəˌhɪərəʊ)

— n , pl -roes
	characters with superhuman abilities or magical powers, wearing a distinctive costume, and fighting against evil

Learning Disability Week is an annual awareness-raising campaign organised by Mencap. This year it is taking place from 19-25 August 2013 and will celebrate people with a learning disability, their families and supporters by asking the question; who is your real-life superhero?
I was honoured that Mencap posed this question to me, and here is my answer, in the form of a poem (bear with me, poetry is not one of my superpowers).

Disguised in scrubs and gloves
a uniform of blue or white
or none at all
our superhero morphs

Her face smiles kindly
a wisdom that has seen,
or with enthusiastic youth
he embraces our fears

'Go and love her'
'An ambassador you will be'
'She'll teach you'
'We will be here'
'You learn how strong you are when there is no other way'

The superhero stops us falling
drowning
going under,
saves a tiny life worth living

He fixes a heart
Helps you walk, talk, see, hear
Makes tea and listens
Congratulates, helps, believes

She paves the way with her example
a role model,
a patient visionary
the tireless ambassador

Barriers are smashed as
Superheroes include, encourage
proudly teach and expect
they know no stereotype

Transported into school
hospital, here at home
or online
our hero is there

She wields a gift, an invite
patiently shows flashcards
a scalpel, keyboard or camera
his weapon of choice

Her whistle blows loudly
arch villains he outs
gently melting our hearts
future change from the start

For our superhero is one
is many
is you

Full of heart, so selfless and true

When I was asked to write about my superhero I wondered where on earth to start. Would I write about our daughters who have taught us so much? Mia the thoughtful, gentle soul, with a keen sense of right and wrong. A feisty know-it-all, equestrian and dance queen? Natty who melts hearts wherever she goes, and demands a rethink from all she meets about what Down's Syndrome means today. A model fighting for ad inclusion, a loving daughter, an annoying sibling, a team player, a valuable classmate?

Or my unfaltering husband who simply announced that Natty was our daughter and that she would be fine as he proudly held her aloft on the day that she was born? Our wider family who swooped in to help?

The wise midwife who shook me out of my self-pity, the breast feeding support, the trainee doctor who smiled and told us we would be ambassadors for children like Natty when she was 3 days old. I wish I could track him down and tell him how motivating his words were.

But I couldn't miss out the surgeons and doctors that had saved Natty's life. Or the neonatal nurses that cared for her, and nurtured our bond in the early days. The emergency middle of the night medical strangers, the familiar staff on the paediatric wards. Where would we be now without people like that?

And what about the physio and SALT and portage worker who lifted me with tea and encouragement each week in the early difficult days as they gently encouraged Natty to reach her potential.

The teachers and TAs at Pre-school and school who embraced different methods of teaching, who believed in Natty's abilities and spent hours working out what they were and how to nurture them.

To everyone who has seen my worry, tears, frustrations and listened. To those who offered childcare, tea, hugs, meals, advice, resources, some of whom I have never met in the invaluable online support network.

The charities we couldn't have done without, both those who have provided support directly relevent to our family, and those who work for a safer better future for our children.

The fellow ambassadors, the writer, the photographers, the campaigners, the politicians who believe?

And finally the wonderful adults I have met along this journey who have a learning disability. They light the way for us, make our lives more colourful, show us what is possible. They are the role models for our children.

So, a mix of them all is had to be, and my poem depicts a superhero made up of all these people. A multi-facetted superhuman, whose costume and appearance might change but who influence remains constant.

Thank you to our super heroes this Learning Disability Week.
Join in the hashtag #LDWeek13 on Twitter and link up your posts their or in the linky below.

You can follow our exploits @DownsSideUp as well.