Downs Side Up

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

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

Living Life to the Full

This article first appeared in the May '12 issue of Learning Disability Practice.

Natty is living life to the full

Living Life To The Full

Hayley Goleniowska was initially devastated to learn her baby had Down's syndrome, but Natty is reaching her full potential and has taught her parents a lot about what the condition really means.

I am the proud Mother of 2 gorgeous, confident, funny and popular girls. The youngest, Natty, also has Down’s Syndrome.

All I could think when she was born was ‘This isn’t what I signed up for. This is not what I want.’ But of course, I had no idea what ‘this’ really was.

As Natty’s 5^th birthday approached, my thoughts turned to the crisp, sun-blessed December days just before her arrival when Mia and I planted bulbs together, enjoying every moment of Mummy and first-born alone time that would never be repeated in quite the same way.

This was the time before our lives changed forever, the blissfully ignorant, arrogantly complacent time before we understood what life was really all about. When we shrugged off a 1/297 nuchal fold 'risk' (we now say 'chance' or 'liklihood') of having a baby with Down’s Syndrome as ‘not bad for my age’, (35) and clung to the notion that a healthy, clean-living, vitamin-taking woman would, of course, be expecting another healthy baby.

Diagnosis

She came early, as I felt she would. 2 weeks to be precise, typical for babies with Down’s Syndrome. The natural home birth was calm and straightforward. But a small, silent, blue baby was born, all in one easy movement.

What followed is frozen in time.

The look of desperation on the midwife’s face while my husband waited in shorts in a freezing lane for the ambulance.

Jovial paramedics administering oxygen and helping me to the ambulance.

The midwife repeatedly telling me how beautiful she was as I held the oxygen to her face, a face I could not warm to, could not recognise as being my own baby’s. Hindsight brings sharply into focus that all these professionals instantly knew that Natty had Down’s syndrome, but none of them could, or would, tell us.

Specialist Care

On arrival at the hospital, our baby was quickly taken from us to SCBU and we were ushered into a side room. I insisted that my husband stay at the baby’s side while staff worked on her. Bob still cannot talk to me about exactly what he witnessed and felt during the next 4 hours, save that on several occasions he can recall the code ‘DS’ being used.

But a strange thing happens when you are faced with your worst nightmare. You dare not welcome it in. You dare not let your brain begin to work out that DS of course means Down’s syndrome. You absolutely will not let your head formulate a question to ask what is wrong, because you are terrified of the answer. If you don’t ask, it won’t happen.

I was given no explanation of what was happening and I began to feel that I was being avoided. The panic rose.

Finally my husband returned with a smartly-dressed consultant who delivered his pre-diagnosis of Down’s syndrome. No-one will ever fondly remember the delivery of unexpected news like this, but it felt too formal and too distant. Too much, too soon and overwhelmingly tragic. Talk of leaflets, a poem about Holland and meeting a nurse with a daughter with Down’s, and the addage that ‘some of them even go to mainstream school.’

Our community midwife cried with us.

I wanted to scream at him, make him and what he was saying vanish, but I could not speak. He asked me if I had suspected. I nodded. My core being had known all along. And all of this was done while ‘she’ lay in a distant incubator in SCUBU.

I now understand the angst of those around me too, for medical professionals are also only human. But looking back, a gentle word of warning from a familiar friendly face might have taken the sting out of the thunderbolt.

She was our beautiful but vulnerable daughter first, with her fabulous, exciting life ahead of her. But telling us she had Down’s syndrome amid tears and ‘sorries’ while she was out of sight and reach, meant that she became Downs’ syndrome Personified. My ignorance made her a frightening sum of all my stereotypes based on outdated glimpses into the lives of strangers with the condition, and the negative language and assumptions used by many in the medical profession compounded that.

Medical Support

Key medical ‘angels' then came to the fore. The people whose faces and voices remain, whose influences are still felt in our hearts, yet whose names are long forgotten. Those who made us decide that our lives were far from over and that we would make certain both girls reached their full potential.

The gently persuasive Sister who encouraged us to gradually look at, then touch and finally hold Natty.

The kind nurse with a daughter with Down’s syndrome willing to share a family photo album with us.

The Junior Doctor who announced that he just knew we would be ambassadors for children like Natty one day.

The Midwife who wisely told me that my baby need my love whether she lived or died.

The GP, whose grandson has Down’s syndrome. A no-nonsense man who welcomed her into his arms and coined her nickname Natty.

Knowing Health Visitor no.2 (Insensitive no.1 was quickly bypassed) who had a child with a disability herself, who just ‘got it’.

The calm breastfeeding specialist who guided us through 3 tube-fed, milk-expressing months until Natty finally succeeded for herself.

The Future

Natty won our hearts, grew stronger, survived heart surgery and flourished, as her father always predicted. Her doting sister developed into a senitive, caring, intuitive young lady, due to, not in spite of, her sibling's disability. I began writing my blog, Downs Side Up, to offer support and encouragement to professionals and parents alike, for I know many of my initial fears were based in ignorance. Natty is now an ambassador for Down’s Syndrome in her own right, lighting rooms wherever she goes, smashing stereotypes, and even doing clothes' modelling and making advertising more inclusive.

She lives and loves life to the full and shouts out that Down’s syndrome is beautiful and not to be feared. It is different, it can be unexpected, but it is never bad news, it is never a 'risk'.

Natty Misses her Big Sister Mia

Mia and Natty are separated for the first time when Mia goes on school camp. But Natty doesn't like it one bit...

Strong sisterly bond, right from the start

When I was warm and safe inside Mummy's tummy, Mia's was the voice I heard the most.

More distant than Mummy's, but always there in the background. Sometimes sing-songing, sometimes loud, a tantrum, often laughing, whining or crying, asking questions, talking to Mummy or Daddy, reading a book, whispering to Huggy her teddy. I often heard music too, shakers, xylophone, castinets, the same song over and over 'Girl, Put Your Records On', or a tune from TV programmes that I now enjoy too.

My favourite times were when she put her mouth close to my warm tummy house, and whispered straight to me, into my ear.

She told me she loved me, even before she saw me.

She would tell me what she was eating for tea, and Mummy would pretend I was clapping her when she ate her vegetables. I was doing exactly that of course.
Then she would hug me by rubbing Mummy's tummy. Tickly.

When I was born, I was a bit tired and not very well. Mia's voice was the only one I could muster the energy to turn my head for. I needed to open my eyes to see her, my beautiful sister who had loved me from the beginning.

Since then, we have been together every single day. Not all of everyday, but always a part of it. Even when I was having my heart fixed, she came to be by my side.

She helps me. Sometimes she gets me dressed or takes me to wash my hands. She reads me stories, and draws amazing pictures. I annoy her at times, but I don't really mean it. Then she walks away from me and I cry. We always cuddle on the sofa afterwards though.

I help her too. I hug her when she is sad. I share my dinner with her. I make her giggle with my silly faces and funny noises. I show her little things she has missed, like a daisy in the grass of a bird in a tree. Mia says she wants me to live with her when we are grown up. That might be fun, but I might have others plans.

Today, Mia isn't here.

I ate my tea with Mummy and Daddy but she wasn't there to kick under the table.

I had my bath and she wasn't there to splash me. She didn't wrap me in a fluffy towel afterwards.

She wasn't around to bounce on the bed in our pyjamas which Mummy hates.

I wondered if she was playing hide and seek, but she wasn't in any of our best hiding places.

I kept asking Mummy where she was.

Mummy said she was on a little school holiday. But she surely can't go on holiday without the rest of us! I asked Mummy if Mia was on a beach with sand. Mummy laughed and said no. So where is Mia? Mummy said she was in a big place like a school with all her friends and teachers. Why? (Handily, they have just taught me these question words, so I was putting them to good use.) Mummy said she was learning lots of things on a school trip and that she would be home soon. I bit like when my class visited a farm, only her class were sleeping away from home.

I cried. I cried really hard, and just to make sure Mummy understood, I said that I was sad, that I was crying and that I was missing Mia. I wanted my sister to kiss me goodnight. I wanted to know she was in bed nearby me. Mummy put Mia's nightlight on so it seemed as if she was there in bed, and gave me one of her teddies to hold while I slept. It smelt of her but it wasn't the same. Mummy held me until I fell asleep, tired from crying. It was nice, but tonight, I wanted my sister to kiss me goodnight more than anything else in the world.