Read the second entry from the moving diagnosis blog series from Elena at Frivolous Mama.
This is the second part of our story, you can find part one here. This is a very honest and emotional and if anything I say offends anyone, I apologise because it really isn’t my intention. There are things in both of these posts I wasn’t sure whether to include for this very reason but I really want to be honest about everything that happened and everything that went through our heads at the time. Reading other families’ accounts of their experiences has helped me enormously and my hope is that by sharing this it might do the same for someone else. I also started this blog with the intention of giving an honest account of my experience of being plus size and pregnant whatever happened and I still want to do that, only now it’s taken a slightly different turn.
You can read the rest of the entry here: http://www.frivolousmama.com/2015/06/our-diagnosis-story-pt-2.html?m=1
Read this moving and honest account of a couples’ diagnosis journey, from the inspirational blogger Elena.
I wrote this nine days into what shall be known henceforth as ‘The Strange Time’. I never had any intention of posting it, it was just a way of unloading everything that had happened out of my head. However, a few people have asked if I would be writing about our experience and although this is incredibly personal and emotional I decided it might actually be good to share it with the world. Nobody expects something like this to happen, I know we definitely didn’t. It’s a long read so I’ve split it into two parts, the next part of which I’ll post tomorrow.
On the 9th June, Finkcards held a great #finkchat with Hayley Goleniowska from @DownsSideUp and the hour saw plenty of great questions asked, advice given and positivity being shared.
You can catch up on all the conversation here: http://finkcards.co.uk/finkchat-with-hayley-goleniowska/
Or alternatively, look at some of the snippets of the day below:
Do you still have your baby book, or does your mum?
All those memories, and all those cards.
Imagine having a baby and no one knowing if they can even say
May your sweet angel bring you much happiness
Ladies and gentlemen look no further forward than this beautiful visual story to help parents become a family when a baby with Down’s syndrome is born. I met the lovely Cornwall ladies this year at the DHG (littlest charity with the biggest heart) family conference and was captivated by their book. The whole concept is so simple and heartfelt that it deserves being everywhere.
a quick explanation
“Looking Up has been created by the parents of the Cornwall Down’s Syndrome Support Group and features pictorial stories following the early years in the lives of some of their children.
Sometimes it can be really difficult for families to envisage what life with their new baby with Down’s syndrome will be like, particularly if he or she is born with health problems. This book helps to explode some of the myths and shows the reader that given the right opportunities, children with Down’s syndrome develop and thrive alongside their peers.”
the message of the book itself
The message of the book itself:
“As parents of babies born with Down’s syndrome, we all remember those early days after birth and for some of us the great need to find information on the future for our children.
With this in mind the Looking Up Group members, who are a part of the Cornwall Down’s Syndrome Support Group, wanted to reach out to other parents of new-borns with Down’s Syndrome to share positive an uplifting photos of the amazing journey of everyday life with their children.
Each page tells the early years story of a child with Down’s syndrome, showing the ordinary lives of our extraordinary babies as they flourish into cheeky toddlers and then on to school age.
New parents will be facing some challenges ahead but in this book we do not focus on the medical facts or statistics but rather the children themselves.
Sharing the concept and message behind this book and working together with several contributors to produce this amazing publication has been the labour of love for three mums from Cornwall – Vicky, Sandy & Angie.”
how to obtain a copy of this book
“All profits from book sales go directly back into the Cornwall Downs Syndrome Support Group charity and are used to print more LU books to be gifted to as many new parents as possible upon diagnosis in those early and often overwhelming days.
For this reason, although the book is available on Amazon, it is preferred that to purchase a copy the buyer use ‘Edge of Time’ who are a local Cornish bookseller and take a much smaller percentage than other online or high street outlets.
To do so please use this link:
Checkout is secure and shipping is fast and reasonably priced.
Sometimes you just have to stand up and be counted. As learning disability nurses we have a long tradition of doing this; in fact some people would lay it as a criticism at our door, in that we campaign to make things better for the public we serve rather than championing our rights, identity, and professional profile.
At PC13 we sold you sticks of Blackpool rock, with Positive Choices written all the way through it; Lots of us joked that if you chopped our arm off then it would say LD nursing right through to our core; so does learning disability nursing define you or do you define it? A really hard question to answer and one I hope none of the academics reading this ever set you as an assessed piece of work.
So why the three clip art images? Well there should be three names attached to them: Nico, Thomas and LB. Some of you will have heard me talk before about the ultimate role of the learning disability nurse is to both represent and re-present services to people who have a learning disability and people who have a learning disability to services; this has never been more needed than now. Three lives cut short, and three sets of families grieving, three sets of extended communities who have the wrong image of what professional nursing support for people with a learning disability is all about. This is wrong, it shouldn’t happen and we have to turn this around.
So to answer my own question: I don’t define learning disability nursing, neither does it define me, but the values of learning disability nursing and our mantra of together we are better do define what I do, and I know it does you too.
Enjoy #PC15 and don’t forget these three names. Nico, Thomas & LB
Such a simple word that means so very much in the days after a baby is born.
Eight years ago when Hayley Goleniowska’s youngest daughter was born it took a week for any congratulations cards or gifts to arrive. Natalia had Down’s syndrome and apparently most people just didn’t know what to say.
“It was one of the most hurtful things about that time,” she recalls, “I just wanted people to ask about the birth, how much she weighed, what we had named her. All the usual things.” I don’t blame people for not knowing what to say, but it was difficult.
This new pack of cards Talking About Down’s Syndrome – Conversations for New Parents, produced by Fink and written by Hayley, contains a whole section on getting to know your baby for the unique individual they are, welcoming them to the family and the world and celebrating their arrival.
Friends and family reading the pack will be encouraged to think about ways of marking the new life, as they would with any baby. If stuck for words they could simply lift any of the questions contained within the Your Baby section to break the ice with new parents.
“ How did you choose your baby’s name?”
“Have you kept your baby’s first outfit?”
and “What’s your baby’s favourite toy?” will lead to more questions and more conversation.
Once you get talking, you might find it easier than you thought, and who knows where the conversation will lead you. Life is a constant learning curve for us all.
Hayley Goleniowska is a writer and speaker, working with parents, teachers and medical professionals as well as self-advocates who have Down’s syndrome.
Her work is internationally renowned and her blog Downs Side Up has won many awards for its outstanding contribution to society. Through her many media interviews she also hopes to gently change the public’s perceptions of the condition.
Hayley and her eldest daughter Mia have recently launched a book for children, entitled I Love You Natty: A Sibling’s Introduction to Down’s Syndrome.
Hayley brings her expertise on talking about Down’s Syndrome for New Parents to Fink Cards where she will publish a new pack to help new parents find the early years’ support they need.
Hayley is passionate about increasing the support that parents receive after unexpected news, whether that comes during pregnancy or after a baby’s birth. By easing their fears and helping them to sort the facts from the myths that often surround Down’s syndrome she hopes to buy them precious quality time with their newborns. For more information visit www.downssideup.com
We in LD are very good at networking: Our Facebook pages and twitter feed are testaments to that but maybe (no definitely) we need to show the wider family of nursing how much we can and do share! I have recently started some work with Paula Smith from NHS England: she is the Project Manager for Improving Lives & Learning Disability Safety, Team Nursing Directorate NHS England. Email: Paula.Smith27@nhs.net
We both realised that there needs to be more joined-up communication between the learning disability nurse community so can I please encourage you to join the LD community on the 6 C’s it’s a mine of information!
Learning Disability Student Nurse, Lucy Cleden-Radford has been writing about PC2014, and it is great to hear that our events are such a success with those they are aimed at. If you want to read Lucy’s report of the day, head over to her blog.
Positive Choices 2014 saw a great collection of events and speakers all group together in Kingston to work together to support LD nurses.