Supporting the Physical Needs of People with Learning Disabilities: Working with Families

A handbook for professionals, support staff and families

by Steve Hardy, Eddie Chaplin and Peter Woodward

Chapter 17: Working Together with Families (reproduced below with permission from Pavilion Publishing)

by Hayley Goleniowska

Book: Supporting the Physical Needs of People with Learning Disabilities

I am very proud to be able to present a chapter I wrote for the above book for medical professionals about the role of families in ensuring quality healthcare for patients with a learning disability. 

Fate: Reunited with the Nurse Who Changed Everything

Just over ten years and a few weeks ago, our youngest daughter Natalia quietly and swiftly made her entrance into our world. A gentle birth, a soft soul and a rare delicate beauty came together that day. 


Yet all around us, and her, raged a kind of storm. Turbulent emotions, the whispering winds of ignorance and a heavy weight of worry filled our hearts. 

Reunited with the nurses who changed our lives


The identification of Down's syndrome and a heart condition was a shock to us, something we weren't expecting, or at least had shut from the consciousness of possibility. 

But there she was, vulnerable yet with immense strength and determination, a unique individual ready to smash her way through stereotypes, a tiny person in need of support yet our greatest teacher in the making. 

Natty's early days in NICU seem so long ago

And while we floundered pathetically, grasping for acceptance, climbing the learning curve from naivety to reality, it was a skilled team of experts who held us all afloat. They were our safety net. The teams of neonatal staff in NICU not only stabilised Natty, got her well enough to learn to feed and come home with us some weeks after her slightly early arrival, but held us all together. They made us bond.

I often describe having a baby who has to spend time in hospital care as feeling as if they aren't yours somehow. 

You are afriad to touch or help with their care for fear of hurting them, or doing the wrong thing. You ask permission before holding them close, changing a nappy or helping with a feed. The environment is wholly alien, clinical, sterile with the smells and sounds that accompany that. I remember the bins lids shutting, the beeps of monitors, the smell of antibac and squeaky floors as clearly as if it were yesterday.

I recall too the heart-stopping fear each time the phone rang if I had popped home to shower, change clothes or cuddle Mia with a book before bedtime. Each ring surely meant that our baby hadn't made it.

Cold shudders too the morning I arrived and found our baby's bay empty. What had happened in the night? Where was she? Hearing that moving up the bays meant she was improving was one of the happiest days of my life.

And all the while the constant, firm confidence of the teams who smiled and listened, who told stories of other families, their experiences, who brought tea and slowly but surely filled us with the knowledge that we could indeed do it. We were up to the job of being Natty's parents.

Role Model Nurse

One woman in particular played a vital role in this. A neo-natal nurse with a difference. She has a daughter who also has an extra chromosome and just at a point when we couldn't imagine a way forward, when we could never again envisage a trip to the beach, a walk in the park or a typical family party, she leant us a small photo album. The book had been seen by many other families before and contained the pictures of her ordinary family events.

I recall the joy at seeing children digging sandcastles together, siblings sharing a bath, sitting round on a living room floor near a Christmas tree. I spent hours soaking up the 'normality' of these photos and trying to look ahead to where our own family was heading.

Looking Back with Gratitude

So when a decade came to pass since we left that safe setting and trusted ourselves to cope with naso-gastric tubes and heart monitors and ordinary every day baby care at home, we felt it was time to return and properly thank the teams for all they had done.

A crowd-sourced basket of gifts was filled. By which I meant that I asked Downs Side Up readers to make suggestions, thank you all.

All manner of teas and foot sprays, hand creams and bath bombs, not to mention lots and lots of black pens (who knew they would be such a hit with medical staff!) and a copy of our I Love You Natty book were taken back to that ward in our local hospital.

As we rode in the lift the memories returned of how hard it was to walk past visitors to the maternity ward arriving with balloons and fluffy bears, at a time when we were yet to receive a congratulatiory card

The kindly nurses who had cared so perfectly for us all were still there. They even remembered us. I struggled to say just how much we owed them, it all became a bit jumbled. I knew they were busy and thankfully we didn't actually go in. For I left a mass of deep emotions behind those secure doors that are probably best left untouched.

Fate Reunited Us

And as we returned home I talked idly of the nurse who had shared her private snaps just to help us in our time of need, a nurse who in truth inspired this blog at the very beginning with A Photo Gallery of Hope. She hadn't been there that day. I hoped she would get to read the card I left for them all and know just what she had done for us.

Next day she was again far from my mind as I stood in a packed supermarket with my weekly shop. A jovial older couple stood behind me, and for some reason I let them go in front of me. They only had a few bits, it wasn't fair for them to wait behind me. We chatted, they gave me a hug. I'd done my good deed for the day... or had fate stalled me?

I was slow to load my purchases and a lady behind me offered to put the last few bits onto the conveyor belt as I packed at the other end. How kind. The karma was in full flow.

We chatted and laughed, her easy smile such a rare delight. Such a comfort. So familiar somehow.

She must be a teacher or a nurse I thought to myself, someone in a caring role.

And just as I pocketed my credit card my mouth uttered, 'You look familiar, do you work in neonatal care?' It came from no-where, without my brain mulling it through. 

She nodded, and in a second I knew it was her, the photo album owner. I hadn't seen her for 10 years and here she was helping me with my broccoli.

For the second time that week I flustered my thanks, how much she had changed our lives, how much I appreciated her gesture. I didn't say enough, I didn't hug her, or did I? The till operator smiled, piecing together our story.

The same album is still being used, now along with our book. 


10 years on and we are regular beach combers


And right there fate had brought us full circle, right back to where we began exactly a decade before. It had showed us clearly how far we had come, lay the then and the now side by side for comparison. It had reminded us of the gratitude we must all have for the support we receive from others and that now, we in turn have a tiny part to play in paying it forward and helping others on the road behind us. 




Flemish Painting Features Angel with Down's Syndrome

The Adoration of the Christ Child


This oil on wood painting shows a classic nativity scene, and the little angels kneeling at the front on the left clearly has Down's syndrome. Some think the shepherd at the back on the left also has an additional chromosome.

At the time when the work was created it was common for the faces of those who had commissioned the art to feature within it. Perhaps we are looking at the face of the much-loved daughter of a wealthy and proud 16th Century Flemish family here. 


The 1515 Flemish painting, by an unknown artist, depicts an angel (next to Mary) and possibly the shepherd in the centre of the background, with Down's syndrome.


It's wonderful, and it shows that Trisomy 21 has been around for a very long time. The Flemish artist is unknown, but was a follower of Jan Joest of Kalker. The painting resides at the New York Metropolitan Museum of Art





Win a Change the World Babygrow

WIN a fabulous baby grow by Giftwink via Downs Side Up.


I recently entered a competition at Mumsnet Blogfest16 to win one of many fabulous and unique prizes on the Giftwink stand adorned with gorgeous gifts that ranged from felt fox bootees to unicorn hats and superhero dolls.

A quick quiz revealed that I am a #festivefanatic (apparently).


I blagged won a fabulous prize for you from Giftwink


My eye was immediately drawn to a little babygrow with the best. ever. slogan.

"NOW I’M HERE, I MIGHT AS WELL CHANGE THE WORLD" it read. 

Win a Change the World babygrow


How very apt for our children I thought. How fab and fitting would that have been for Natty when she was little, and how very true were those words, because our children change us, their families and our communities each and every day.

Well, as luck would have it (perhaps my over-exuberant squeals upon seeing the item *may* have swayed it) I WON the baby grow! 



And as I don’t know any little people in the 0-6 months category, I am offering this fabulous item of clothing up as a prize here on Downs Side Up.


Win a Giftwink Change the World baby grow from Giftwink via Downs Side Up


Just enter the Rafflecopter competition below by leaving a comment or tweeting us and a winner will be chosen at random on Monday 19th December. This means that I will be able to post it just in time for it to reach one of you for Christmas. Quick you've only got 4 days left! 
(UK only please)




The babygrow is worth £20 and can be purchased here on Giftwink, along with many other fabulous and original presents.

Good luck!



Oh, and we'd love you to vote for Downs Side Up in the prestigious UK Blog Awards where we have been nominated in the Healthcare section. It is such an honour to be considered in this way as we fly the flag for learning disability with our blog. You have until Monday to cast your votes. 






5 Reasons to Blog About Special Needs (and 5 Pitfalls)

All those time-hopping notifications on social media reliably inform me that my blog Downs Side Up is 5 years old. 


That just can't be right.

Can it?

*Cues fanfares and balloons and copious amounts of cake and makes a note to slow down sometime soon.*

Blogaversary

So why are there so many special needs blogs these days, and what are the advantages and pitfalls of starting one? 

For 5 years I have been jotting my private musings into my computer and my words have flown around the world, creating tiny changes here and there. Little ripples of hope I like to think. Only this week I received a message from a woman who's just borrowed a year old copy of Good Housekeeping from her Cape Town library and found our 'inspiring' (her words) story inside. 

This concept never ceases to amaze and humble me.

SEN blogs in the media


Covergirl

This Christmas, a sparkly article in Womans Weekly was published, featuring Natty on the front cover and a two-page spread inside. Blogging is evolving, it's becoming more and more mainstream and merging with the media.

Evolving Blogs

Over the years I've written about the people we've met and the places we've been through Downs Side Up and looking back I feel the need to pinch myself at times. There've been celebs-a-plenty, more magazine articles than I can remember, commissions to write chapters and articles, collect awards, interviews, tea with the Queen, fancy dress with the Lord Mayor of London, a slot in a documentary, lots of modelling and a sea-change towards inclusive advertising. 

But this is not why we do it. It is the thousands of parents and bloggers and medical professionals that we have hooked up with along the way that really count. The rest is just icing on the cake. 


'Why are there so many special needs blogs these days?'

I recently attended Mumsnet #Blogfest16 to host a Special Needs Blogging round table, and one of the first questions I was posed by the organisers was why we thought there were so many special needs blogs, enough to warrant their own round table and even their own award ceremony (The BAPS - Bloody Awesome Parents - are to celebrate these writers in May '17):


Mumsnet Blogfest16 Special Needs round table


When I started Downs Side Up five years ago, it was one of the first Down's syndrome blogs in the world. It filled a void I guess. And 5 years ago when I first attended a blogging conference I pretty much knew all the other SEN bloggers who attended. There was Steph Curtis - Stephs Two Girls and Tania Tirraoro - Special Needs Jungle and Steph Nimmo - Was This in the Plan??? and Renata Blower - Just Bring the Chocolate, each writing in their own niches. 

Today, there is a blog on every condition and disability to suit everyone. Each with a personality as varied as its author's voice and each with its own unique readership. There are family forums and patient groups hosted by every charity and many companies too, lending support to all who are looking for it. This can only be a good thing, our writing has formed a kind of safety net.

But why are there so very many of us writing about this particular topic? We* set about finding out why, in a safe and supportive space. 

5 Reasons to Blog about Special Needs

It's true that bloggers write incredibly powerfully about special needs and mental health, often drawing on personal experiences in a way that mainstream media struggle to do. They are completely motivated by a desire to create change for their families and others, in a way that paid writing cannot match.
  • It's cathartic - the most common reason to start a blog is to be able to express yourself. As one writer put it, blogging is a cheap form of therapy or counselling for many. So often we find ourselves writing into the evening, tears plopping onto our keyboards, and working through the trickier emotions we so often face and somehow we 'blog through it', as if seeing the words on the page unscrambles what is in our heads and hearts.
  • Sharing information - Some parents share resources and tips on their blogs, others use the online space as a kind of diary to provide a running commentary with friends and family when their child is ill. This reduces the need to keep repeating themselves and the blog acts as a kind of one stop shop of information. It can also be a way of explaining difficult situations to loved ones when a face to face conversation wold be difficult.
  • Support and community - When I began my blog I thought I would be supporting new families with a baby with Down's syndrome. What I very quickly realised was that my blog would act as a portal into a whole online community who would help me through the toughest of days, the worrying moments and whose families would lead the way for us through example. Blogging brings us access to a fantastic network of support and friendship and often supplies the answers we seek that we can access in small chunk whenever we are ready. It reinforces that we are not alone.
  • Campaign work - Often the blogging community join forces to create lasting change. Our voices are stronger and louder together, and we can see them put to good use working on projects such as calling for more accessible toilets, supermarket trolleys with support for disabled children or adapted clothing and larger nappies to be more readily available. These, along with campaigns to educate the public and medical professionals about various conditions are having a real impact on the way families like ours experience life.
  • Fundraising - Another way in which SEND bloggers often join forces and work together for good is fundraising for their charities, as well as raising the profile of the work they do. With social media and hashtags often going viral on awareness days, it can be a straightforward way to collect vital funds. 

5 Things to Watch Out for When Blogging

Blogging is not always plain sailing, in fact far from it. I have experienced many times where I have thought about giving up, where it has taken an unexpected turn I didn't like. Here are the pitfalls that you may encounter along the way. 
  • Comparison with others - It's easy to end up either comparing your writing, your lifestyle, yourself or your child's condition to others. You, your family and your blog are unique, so accept and celebrate that. 
  • Pity and/or inspiration porn - This can be a very fine line to tread for many and you have to weigh up being honest and truthful with creating a welcoming space on your blog for others to visit. I think it's important that readers don't feel sorry for my child, or think her inspirational for doing ordinary everyday things, that would be when it all becomes patronising. I would also stop short of using her voice as my own, putting words into her mouth. 
  • Privacy vs advocacy - There is increasing criticism of parents writing blogs about their children with disabilities without their informed consent. Our blogs, after all, will be a digital tattoo for the rest of their lives and this is worth bearing in mind. My blog has certainly changed as the children have got older but it has always been a place to showcase the voice of those with Down's syndrome too. I think having a child with a learning disability means that we often become their advocates and without our blogs they would still be hidden and forgotten. That said I am cautious about what I share and many bloggers chose to keep their writing anonymous. 
  • Trolling - The internet, social media seem to encourage a kind of sport where it is acceptable to write horrendous things to vulnerable people that you would never say to them in real life. Like most bloggers we've had our fair share of trolls, some which needed police attention, and also criticism from within our community. This can sting and it's taken me years to grow a thick enough skin to let it wash over me. 
  • Losing your way - Comparison to others, following the latest meme, competing for votes for awards, over-monetising your blog and filling it with reviews or simply accepting to help every single charity that ask you to get on board with a campaign, can all contribute to writers losing sight of why they started blogging in the first place. As you should always pause before hitting publish, always pause before you write. Your blog is your own space and it can quickly become hijacked. Sometimes a blog break helps bring back the focus and reminds you of the original motivations and why your readers started following you in the first place. It helps you find peace with your blog. 

So while I can no longer keep up with the volume of SEND blogs, the dinosaur that I am, it is really heartening and important to know that they are there, and that they are making a difference. 

So, keep writing, blog for yourself, your families, your sanity and make your voices heard. 


* List of Mumsnet Blogfest16 round table attendees:

@tygerbearandme
@ggblog44
@cecillaw
@hlmeadows
@happylittlehugh
@orangethisway
@gingerbreadsun1
@asalexgrowsup
@downssideup


Downs Side Up had been nominated for a 
UK Blog Award for Healthcare. 
Please vote for us here





Win a Festive Frugi Family Hamper with Natty the Pyjama Poster Girl


As you know Natty has been modelling for fabulous organic clothing company Frugi for a while now and we’ve teamed up with them to offer you a chance to win this fab Frugi Christmas Hamper. 



All you have to do is click here https://www.welovefrugi.com/frugifamilycomp and enter your details to be put into the draw- it’s easy! 
The competition is open from today until Thursdays 15th Dec 2016 at midnight. The winner will be drawn on Friday 16th Dec and contacted by Frugi via email, they will then pop the hamper in the post in time for Christmas. 


Natty, the Frugi Pyjama Poster Girl



What's more, the Frugi elves are offering to wrap your last minute Christmas purchases in a gorgeous gift bag for only £3.50. 

Frugi gift bags 

It will delight the recipients as much as it excited Natty when she opened hers live in our nightly Facebook broadcast Chatty Natty, which you can watch here

Better still, our pyjama poster girl found a peachy soft pair of festive polar bear Poppy pyjamas inside (RRP £25) which happened to make the perfect 10th birthday gift as well. *Sings happy birthday Natty*

Frugi Poppy Pyjamas make the perfect Christmas present 


What a treat! Thank you #FrugiFamily. 

You can now pop across to Global Mouse Travels to see which gift she received.


UK Blog Award Nominations: Can You Vote for Downs Side Up?

The UK Blog Awards is an industry level event that recognises companies and individuals for the far-reaching and excellent online content they produce. 



Cast your vote here 


Last year I was not only astonished to be nominated, but astounded to be a finalist alongside many others who are creating real change within the healthcare sector.

As the year hurtled on (here's what we've been up to this Autumn) I received a few emails to say that I had been nominated again this year. I'm not one to chase awards, if your blog changes one person's life it is a success after all, but to know that someone somewhere had thought me worthy of such a nomination and had taken the time to email in means such a great deal to me.


So the voting is now open to the public

Downs Side Up is sitting in the Healthcare section again, I guess because we work with medical professionals training them in sensitive use of language, delivering talks at conferences, helping with dissertations via email, urging more education around ante-natal screening, showcasing the work of LD nurses and teaching the world about Down's syndrome, helping smash the myths that continue as well as supporting new parents. 


Natty delivers a talk to medical professionals at a conference 

If you would like to cast a vote our way (it's all down to numbers in this round) you can do so on the link below, and you can hunt around for your other favourite blogs to vote for too. 

Most of all this is a way to bring more focus onto the issues faced by those with a learning disability, and to create new links with others in the same field. 

Thank you all for your support. 


http://www.blogawardsuk.co.uk/ukba2017/entries/hayley-goleniowska