Gorgeous Models - One with Downs Syndrome

My head is spinning with fabulous blog posts that I can't quite find the time to sit down and craft at the moment: 

Breastfeeding a baby with Down's Syndrome part 2

Tips to alleviate constipation

An observation on a mother and son with Down's I met by chance in town 

The consultant that diagnosed Natty's condition at birth revisited and re-evaluated...  

They'll all have to wait. School hols and lots of lovely house guests are taking precedent, and that's how it should be. 

We blog about life, not live through our blogs, after all.

Beauty Comes in Many Forms

Never lose an opportunity of seeing anything that is beautiful, 

for beauty is God's handwriting -- 

a wayside sacrament.
Welcome it in every fair face, in every fair sky, in every flower, 

and thank God for it as a cup of blessing.

- Ralph Waldo Emerson

But in the meantime I'd like to share a proud little moment with you all. Seemingly frivolous perhaps, but huge for the future of Down's Syndrome, the way our children are perceived.

Today, Frugi launched their Autumn Winter '12 collection. Natty and her sister Mia are there, amongst the other beautiful models. Just 2 happy little girls having fun with others, and enjoying dressing up in pretty clothes...

Getting Natty's face into catalogues was always one branch of my idea for gently changing perceptions of Down's Syndrome, alonside the blog, media appearances and article writing. 

In one small photo, a simple shot of a girl wearing pretty clothes, lies a hugely important message. 

The message conveyed is that children with Down's Syndorme are beautiful, love gorgeous clothes, deserve to be well dressed. That they are just as important as any other child, they are capable of the same activities, enjoy life to the full, can work as clothing models, are loved by their siblings and friends. They too can woo a camera person, make a marketing team giggle and are role models for other children who see themselves represented in mainstream media for the first time.

I hope Natty has gained an immeasurable amount of confidence from being accepted as a model too. She beams from ear to ear whenever she sees her face in print.

Put simply, I hope that other beautiful small people with an extra chromosome simply look at Natty in those pages and see a girl who looks a bit like them but who doesn't really stand out at all. She is just one of the gang. She looks natural and at home amongst the others.

And that has been our family motto since the day Natty was born... she is just one of the gang.

Dry by Night - Toiletting Stage 2

Tonight we 'nervously optimistically' kissed Natty goodnight and praised her for being such a big girl for not needing 'sleepy pants' for the second night on the trot (pardon the pun!). 

(Nappies, diapers, pull-ups, dry nites, whatever you call them, be banished.)

It is precisely a year ago that we were in the thick of very concerted toiletting efforts, helping Natty become dry by day. She was due to begin school in September and she was ready. 

And here's is the most important thing to bear in mind with any child; it is not the chronological age that counts, but the developmental stage they are at when attempting this kind of life change. Starting too soon and becoming stressed could backfire. 

So relax, see the funny side, and enjoy your toiletting journey. It will involve accidents, it will involve poo. Buy cheap pants/knickers you can throw away when beyond redemtion, take a plastic bag and several changes of clothing. Pack your sense of humour.

Here is my post about Natty becoming dry during the day, with tips and techniques to help you all. Ode to Potty Training part 1. I also know many parents who have found making a picture timetable useful for providing a visual reminder of the small steps involved in using the toilet.

That stage went pretty well.  Natty started school wearing pants but continued to have the odd accident throughout the year, but then I figure most children do that don't they. We decided to trust her and not look back. Even on long journeys we prepared for accidents, but never once returned to using nappies during waking hours for fear of confusing her.

At bedtime, nappies became named 'sleepy pants', to distinguish them from what she had given up during the day. We bought the pull-up variety that seemed a little more grown up. I made a conscious decision to wait until I saw a sign from Natty that she was ready to relinquish these. I decided not to push or stress about when that moment came, not to compare her to other children, with or without Downs, but to wait for her lead.

2 weeks ago, the moment came. Natty woke with dry sleepy pants and showed me, proud of herself. We knew the bladder control existed. We knew she could do it. We said no more and waited. Several days passed with wet nappies in the morning then another one or two with dry ones. Natty and I had a chat about how grown up she was, and I asked her straight if she wanted to try no sleepy pants like Mia, Mummy and Daddy. She beamed and said yes....  there is nothing like intrinsic motivation.

Other, happy coincidental factors to my decision to start now are that it is summer, we can hang washed bedding out to dry easily, there is no school so the timetable is more relaxed and I am mentally in a place to deal with it. There is no point in trying to do this if you have a lot of other stresses on your plate.

So, we bit the bullet as it were. I've stocked up on bed-protectors to help save the matress's life. You can buy disposible ones or plastic-backed towelling varieties, but you will need them. The White Company sell them. We have a couple of cheap spare undersheets and lots of PJ trousers. Knowing that makes any accident just a quick change of a sheet and PJs and not a major disaster. Prepare for the worst and you will take it all in your stride.

We carried out our usual bedtime routine, but brought the little drink of warm soya milk forward to before story time and not during. We then introduced a 'big girl's second wee' just before lights out. We did this with Mia, and ensures and emptyish bladder as they fall asleep. Natty seemed proud to be invited to do the 'second wee', as if it were part of a big grown up ritual.

The final part of the plan, and one I am less certain about as we never once did this with Natty's elder sister, is lifting her from her slumber to sit her on the loo as we go to bed at around 11pm. I guess this satisfies parent insecurities about the rest of the night to come being dry. I guess one is supposed to phase the lifting out in time. But for now I am going to do it, encouraging Natty to walk back to her bed and snuggle back down. 

Oh, and I nearly forgot the reward of a chocolate drop in the dry mornings!

Anyway, the main thing left to say is; 

Natty, Mummy and Daddy are immensely proud of you.  We'll crack this next step together, however long it takes x

10 Questions for 1 Woman

This week I did a lovely little interview for @MummyRatesIt, which was a great opportunity to share what I do as Downs Side Up.


10 Questions for 1 Woman - Hayley Goleniowska @DownsSideUp

Before...and now.

Before...

And now...

Silent Sundays

Tooth and tears - Sunday 30th September

Natty: model, sister, daughter, friend - Sunday 23rd September

Silent Sunday - Home Ed: 'a' and 's' the kinesthetic way!

Sunday 9th September 2012

Silent Sunday - Mia's Love 2nd September 2012

Silent Sunday Natty's modelling debut with Frugi 26th August 2012

Silent Sunday Shhh, don't tell mum 19th August 2012

Silent Sunday Family volleyball 12th August 2012

Silent Sunday 29th July - Hush Little Cousin x

Silent Sunday 22nd July '12 - Sisters in the Sun

Silent Sunday 15th July '12 - Junk Robot.

Silent Sunday 8th July '12 - Cycling!

Down Syndrome Research Foundation

Hayey Goleniowska,
creator of www.downssideup.com

I'm Hayley, the Mum of 2 beautiful girls, the youngest of whom, Natty, has Down's Syndrome.  I've been asked to share my thoughts on the work that the Down Syndrome Research Foundation do.

When your baby is born with any kind of health issue or disability, the first hurdle you are faced with is coming to terms with the news, which is often a great shock. Bonding can often be compromised at this stage, as parents mourn the healthy baby they were expecting before they move on to accept and love the one they have.  They must all wonder at some stage too, whether they are up to the challenge of bringing up a child with additional needs. Your mind is filled with worry and fear and guilt. Will the baby survive? Is she suffering? Would it be better for her if she didn't survive?

I don't recall looking much beyond this initial stage when Natty was born, beyond the holes in the heart, the surgery on the horizon. But one thing was for sure, I knew that the medical teams available to her were second to none, and that the procedures they had at their disposal were the very finest around.

Over the first year Natty won our hearts, learnt to breastfeed despite being initially tube-fed and grew stronger, despite frequent visits to hospital with upper respiratory infections or pneumonia.  Each time she was treated expertly, with an open-door policy befitting of her vulnerability. We never once doubted the knowledge and resources behind the medical teams.

As Natty flourished and was ill less often, I suppose our focus turned to her developmental milestones, helping her crawl and walk , babble and talk.  These were the areas that would make her like any other child and all this she has done with a little extra help and patience, but her legendary aplomb.  She is a little whirlwind, who grabs life with both hands and is now reaching her full potential in all areas; reading, writing, making relationships, riding, swimming, even clothes modelling.  But we need to make sure that this always remains the case. We now need to turn our attentions to what lies ahead of us on this road less trodden.

This is where the charity DSRF do amazing work.  Because it is the health issues that our children might face as they grown into adults that perhaps need more understanding and research.  They are first and foremost our children, not a medical group, but many conditions are common to people with Down's Syndrome and it is those we need to understand more fully if our younsters, that have got off to a flying start are to continue to soar.

Personally, I would like to understand the prevention, detection and treatment of Thyroid problems, coeliacs disease and diabetes, particularly sub clinical cases.  Can any of these be headed of with a preventative diet for example?  I have dabbled in the use of dairy and gluten free diet when trying to reduce musuc and associated glue ear.  It seemed to work and head off an operation to insert gromits at the time, but 'seeming to work' is hardly empirical evidence is it. Was it coincidence or is this a really useful tool for children in that situation?

Likely eye disorders have been mentioned by our opthalmologist with little or no explanation, and I would like to know if my child should be being tested regularly for Leukemia.

I am also fascinated by the infuence of nature versus nurture on the development of all children, but particularly those with DS.  How much of their IQ is determined by the extra chromosome, and how much by external factors such as diet, family and upbringing, even vitamins and supplements taken by a mother during pregnancy, or in a concentrated for in later life.  I don't know of any longitudinal studies covering such a vitally important area.

Most of all, I fear early onset Alzeihmer's for Natty, and I welcome recent research into the genetic causes of this form of dementia in adults with Down's Syndrome.  If safe medication could be found to ward off this degenerative condition, I can't think of many families who wouldn't welcome it. I hope that the DSRG can help bring about pioneering trials in this field.

As I look forward to our daughter's future I would love to see a time where all her health needs are met fully.  Wouldn't it be wonderful to see specialist nurses or support workers, trained to work with adults with learning disabilities, available to all.  They would be there to draw all strands of the medical profession together, to mediate and work between the patient and their medical professionals, able to converse in Makaton, explain new or strange concepts, and the reasons why regular checks for chronic diseases and routine tests such as cervical smears are done. Their job would be to bring the patient to those appointments as necessary.  

All this is vital if we are to support independent living for adults with Down's Syndrome, leading them towards happy healthy lifestyles. After all it is that extra little chromosome that gives our children the extra factor. Let's do everything we can to preserve that. 

Thank You for Having Me

I have just returned home from one of the most worthwhile, life-changing, yet surreal weekends of my life.  I have been to the blog writers' conference hosted by BritMums Live in London. 

I signed up and set off with my student hat metaphorically pulled on hard, my notepad and pen in hand and my brain set to 'absorb' mode.  I knew this was going to be a huge learning curve for me as a newbie blogger, technical numpty and country bumpkin, so I decided to put as much into it as I could... for you always get out what you put it in life.

I was actually a finalist in the Inspire category of the Brilliance in Blogging Awards. Quite frankly, this terrified me. The other women in the category were accomplished, polished writers with far more worthy messages than mine to spread. I felt like a fraud in part.

As the Friday progressed I became more and more fearful. I knew not one soul. I didn't know what to expect, what awaited me, and I really didn't want to sit at the front with the other nominees that evening. 

However, the lovely Butterflies welcomed me with open arms on arrival and I then felt able to throw myself into chatting to as many people as I could, and trying to recognise as many blogging names as I could.  Oddly, when you meet someone you've talked to online and, more importantly, whose blog you have read, there is very little need for small talk. You already know so much about each other, so that all that remains is to decide whether you warm to each other's personalitites. This was what it was all about for me, the people and the wealth of knowledge and experience that they shared between them. So lovely to meet @Sara @RenataBplus3 and @StephNimmo

That evening I attached myself to fellow finalist @KateonthinIce's side, with a large glass of bubbles in hand. When @MummyWhisperer won our category, I was overjoyed for her and her funny, accomplished blog.  Selfishly too I was relieved that I could now sit back and enjoy the company of the amazing women I had met that day.

But inside I knew that I had already won. I had won a personal battle against my fear of going to London alone, I had navigated day one of the event without hiding in the loos, I'd learnt a thing or two about making my blog more user-friendly and I had been asked to take an active part in the following day's proceedings...

For I had been asked to read one of my blog posts as part of the keynote speech at the close of the event.  This was the biggest opportunity of my lifetime.  I knew that I only had a few minutes to engage a captive audience and leave them thinking differently about Down's Syndrome.  I knew I had to get it right. There would be hundreds in the audience, so I had to conquer my nerves and think of the bigger picture.

I decided that I would ditch my usual jeans and unattractive wellie-shoes look, in order to make an impression.  The un-madeup, ponytail-wearer would have to shout loudly in the face of subconscious ideas of what a mother of a child with Down's Syndrome looks like.  So, a new shorter hairdo was adopted, nails were stained a flash of shocking pink, and I dug out some sky high stilletoes to match, that had once been worn to a wedding long ago.  I slapped on some makeup and prayed that I wouldn't fall over my heels on the way to the stage.  

This had an amazing effect. For although I had simply planned to show the world that Mums with children with disabilities are not, by definition 'Frumpy Fuddy Duddies' (I quote Frankie Boyle), it was like putting on a uniform.  I became an even more confident version of myself.  I knew I could speak loud and proud.

Once I had reached the stage an inner voice took over. I began to read What To Say When a Baby is Born with Down's Syndrome. Every single ounce of emotion I had felt at the time of the episodes I was reading about came flooding back. The inner voice quaivered and cried, but I  knew in a moment that you were all listening to me, feeling the emotions with me. I felt as if I were talking to old friends, people on my side, and there was nothing to fear in cracking a little here and there.  Once or twice I had to stop and take several deep breaths before repeating my tearful words more clearly, feeling a sense of desperate urgency that none of them should remain unheard.

My fingers numbed, then my hands, probably from the mixture of fear, adrenaline and deep breaths. I began to realise that I would need to get to the end of the speech swiftly before I passed out.  Then I spotted people crying with me, lots of people. My inner voice smiled, feeling carried forward by the support and love in the room.

When I finished, my body shaking wildly by this point, I stepped away from the podium. Out of the corner of my eye I spotted one or two people stand, clapping. I turned and looked up to see the entire hall rising in a wave. This was a standing ovation. People had put away their smart phones and listened. They had connected with the words. They had cried with me because what I had written was for every single one of them in the room.

@AllforAlenya came forward and helped me to my seat, hugging me until I stopped crying and shaking.  The shock still hasn't stopped and tears keep filling my eyes when I think of that evening. The pride will always be there.

Thank you all for giving me the opportunity to talk to you. 

Thank you for listening. 

And thank you for helping me to gently change perceptions of Down's Syndrome from within hearts.


I am so proud too that others have written about their experience of listening to the reading of What to Say When a Baby is Born with Down's Syndrome and what it meant for them. 
A Standing Ovation - @MummyBarrow
The Tracks of my Tears - @Wife.Mother.Me