Today we’re joined by Hayley Goleniowska, Hayley is a mum who is passionate about inclusion and changing the way the world views Down’s syndrome. Her youngest daughter has the condition, but she doesn’t let that define her.
Hayley is also the author of I Love You, Natty. As a writer and speaker, Hayley works with medical professionals to improve the support that parents receive following a diagnosis, whether it be during pregnancy or after birth. She wishes to buy quality time for other parents on the same journey, by removing the fear that often surrounds the condition.
1. Who would this set of cards be suitable for?
These cards are intended for new parents whose baby has been diagnosed with Down’s syndrome and the professionals working with them. Portage workers, Health Visitors, neo-natal staff and GPs will find them an invaluable tool for understanding how parents feel post-diagnosis and to identify areas where families need more support.
2. Why were you so passionate about collaborating with Fink Cards on this project?
I struggled greatly in the early days following our daughter’s diagnosis. I was in complete shock, due to my own fear and ignorance of Down’s syndrome. There was so much negative language surrounding the condition during pregnancy, and the diagnosis was delivered in a very somber and sorry way. Everyone in our family had their own ideas about what Down’s syndrome meant. A set of cards just like this would have enabled us to talk more freely about our worries, and more importantly to see our precious new baby for the unique individual she is first and foremost, rather than a set of symptoms and predictions for her future.
3. Describe how this set of cards came to be?
Lisa Warner, creator of Fink Cards and I have been Twitter friends for a while. I have been a fan of her fabulous products, but never dreamed of writing a set for her. One day, while she was holidaying in Cornwall where we live, she asked if we could meet for coffee to discuss a possible project. I was so excited about the power of the cards to make a difference to new parents, to buy the time with their newborns, that I came home and wrote the questions, straight from the heart, in an evening. Lisa pulled out all the stops to create the cards in a few short weeks, in time for launch on World Down Syndrome Day #WDSD15.
4. How do you think a set of cards like these might have helped your own family?
We knew so very little about Down’s syndrome when our youngest daughter was born. Most of what we thought we knew was outdated and based in stereotype. We spent many hours researching the condition, often stumbling on outdated information that was depressing. The cards would have helped us sort fact from myth easily. Quite simply they would have helped us see our daughter for who she is and saved us a lot of anguish and heart ache. They are bright, cheery and user-friendly, as well as being portable.
5. How did you feel when your youngest daughter was born with Down’s syndrome?
We were fearful and ignorant about Down’s syndrome. We were given a diagnosis while our baby lay in an incubator on another hospital ward, and it that moment she became ‘Down’s syndrome personified’ a sum of all the glimpses into others’ lives that we had seem over the years. We were also terrified. Terrified of what the future held for us all, terrified of losing her and terrified of loving her in case that happened.
6. What do you hope to achieve with these cards?
We hope that by using the cards as conversation starters, parents will be able to talk more freely to other family members, siblings and medical professionals about their concerns, knowing that they are not alone in feeling a certain way.
They will be able to cut through the myths that surround Down’s syndrome more quickly and spend precious time getting to know their newborns. The questions are also intended to encourage parents to think about topics that might not initially occur to them, such as making time to look after themselves as well as those around them.
7. What were your motivations behind starting your blog Downs Side Up?
When out youngest daughter was born I was hungry for information. Charities are a font of factual information, but are often neutral in tone. I wanted to see what real family life was going to like for us, and so I began a simply blog with our stories, tips and information as well as masses of inspiring photographs to show the world that our daughter is more alike any other child than different.
Over the years the blog has changed, grown and evolved and is now a hub of support, a mouthpiece for those with Down’s syndrome, a voice of advocacy and a campaign tool for inclusion and better support.
8. Is having a child with Down’s syndrome what you thought it was going to be like?
I can honestly say that I was wrong on every single count. Every child is different of course, but every parent of a child with Down’s syndrome feels that they bring an extra dimension to their lives. Natty has enriched and enhanced our family and we wouldn’t change her for the world. There have been challenges along the way, worries about school, heart surgery and illness, but Natty lives life to the full, is bright and beautiful, incredibly funny and an absolute joy to be with.
9. What kind of support was available for your family?
There are many charities, most notably the Down’s Syndrome Association who provided informative leaflets and online support. There is a local support group too but as quite a private family I was always reluctant to go along to those meetings. Natty has always been one of the gang, just part of our community. Invaluable support came for me personally in the form of a wise Midwife, experienced Health Visitor and later the Portage Service.
10. If you could turn back time, what would you change about the day your youngest daughter was born?
I would like to relive that day with the knowledge I now have about Down’s syndrome. I would love to have know a child like Natty who would have removed the fear from those words that came from the consultants lips.
I would have felt differently I’m sure if the diagnosis had been given by the community midwife who delivered her at home, and having her in our arms, or at least touching her in her incubator, instead of on another ward would have made her feel more like our own daughter at that difficult time.
11. What extra dimension has parenting a child with additional needs brought to your family?
Natty has taught us to see the world differently, she has taught us to slow down and appreciate the small things in life. She has shown us that we cannot plan for everything in life, we cannot map out our course, but that we are the strong ones if we learn to bend like reeds in the winds of change. She has also opened up a world of friends for us as a family, for we connect with others in the same situation everywhere we go.
12. How do you think a diagnosis of Down’s syndrome should be delivered to parents?
It is vital that the baby should be present when a diagnosis is given, and parents should be together if possible. They don’t want too much information, instead it is vital to allow them time and space to process but also to give them open access to return with questions at any time.
Later leaflets and books can be given to parents, and they might sppreciate being able to talk to other parents in the same situations, but every family will feel different and this should not be pushed.
13. Do you think having a sister with Down’s syndrome has had an impact on your eldest daughter Mia?
In the early days I worried that Mia would suffer. I couldn’t have been more wrong as she has turned out to be a very thoughtful and caring young woman with an acute sense of right and wrong. That’s not to say that having a sibling with additional needs doesn’t sometimes take some of the attention away from her, so we try to make time to spend time alone with her and to do more grown up activities that she enjoys.
14. Tell us about Mia’s book I Love You Natty: A Sibling’s Introduction to Down’s Syndrome?
When Natty was born I looked for a book to read with Mia to explain why her sister would need a little extra support throughout her life. Most of the books on the market were in American English or rather outdated.
One day, several years later, we found a poem from Mia to her little sister, saying how much she loved her and that her world wouldn’t be the same without her in it. I knew instantly this would be the basis for the book we had ourselves sought.
The book explains Down’s syndrome simply and is accompanied by Mia’s own drawings and our family photos. It is a visual feast and is adored by adults and children alike.
15. You describe your family as ‘just like any other’. In what way?
Our children enjoy horse-riding and swimming, making pancakes and going to the beach. They love each other and they squabble about who is going to hold the popcorn on movie night. We have the same goals for our girls and enjoy the same activities as everyone else.
16. Natty is one of the UK’s first models with a disability. Why do you think this is so important?
We all need to see ourselves represented in the media and in advertising. Moreoever, it’s vital for the world to see beauty in all its forms and to realise that children with Down’s syndrome love dressing up in funky clothes just as much as the next child.
The modeling might seem like a superficial activity, but many new parents write to say just how much comfort they got from seeing Natty in adverts, because it gave them a sense of just what is possible for their child.
17. What have been Natty’s most exciting modelling jobs to date?
Natty has featured in a tourist attraction video, a holiday company website, the Jojo Maman Bebe and Frugi clothing catalogues and most excitingly she was the first child with a disability to appear in a supermarket Back to School campaign with Sainsbury’s. She loves showing off, and for her the castings and photoshoots are like glorified play dates.
18. You work with medical professionals within the NHS. What are your goals?
To change how disgnosis is delivered and to remove the pressure on parents to terminate babies with Down’s syndrome. The rate currently stands at 92% of all babies who are diagnosed antenatally. This reflects a lack of unbiased support at point of diagnosis.
We also want equaly healthcare for individuals with Down’s syndrome throughout their lives, so work on medical passports and one page profiles is essential. It’s really about changing the way society views learning disability, and shouting out that having an LD does not make someone worth a little less than everyone else.
19. Do you think we have far to go before society becomes truly inclusive?
Sadly yes. Attitudes are entrenched that difference is to be feared and segregated. We are getting there slowly in many ways, but until we lose the fear of disability and difference we will never get rid of the idea that ‘eradicating’ disability is the gold standard light at the end of the tunnel.