Archive for family communication

20 questions with Hayley Goleniowska

TodDowns Syndromeay 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.

 

Thank you so much Hayley! You can find more from Hayley on her website and Hayley’s Talking about Down’s Syndrome – Conversations for New Parents cards can be found in our shop here.

Reading Matters Conference

Reading Matters

In case you weren’t aware Fink Cards teamed up with Reading Matters to create a set of cards to help improve literacy, build confidence, that are fun and easy to use and are suitable for all ages. The idea of these cards is to use the with individuals and groups to expand vocabulary and develop language and communication skills.

Reading Matters is a UK charity and they improve reading skills. They have a vision of the future in which all children and young people have the reading skills and confidence they need to get the most out of life and our mission is to help them to reach their potential by becoming confident and enthusiastic readers. They provide literacy support training to adults, young people, children, educational professionals and parents and carers, and manage networks of volunteer Reading Mentors and Reading Leaders in schools and other settings.

Reading is important because words – spoken and written –  are the building blocks of life. Reading develops our minds, our creativity and imagination and is how we gather new ideas and insights, gaining the knowledge and power to make our own decisions. Through reading we can go anywhere in the world and be whoever we want to be; the possibilities are endless.

This year I’ll be attending Reading Matters Conference which is called ‘Bringing Literacy to Life.’

The conference is aimed at head teachers, teachers and practitioners across the key stages, librarians and all those with an interest in developing the literacy skills of children and young people.

There is a great line up of confirmed speakers and workshops by a mixture of different people, myself included. The day will be chaired by Rachel Kelly, Chief Executive of Reading Matters.

reading matters conference set up

I’m so excited to share these Fink Cards with you and to get them out there into your hands!

Autism #finkchat with Wendy Usher

Our #finkchat this week was with the lovely Wendy Usher from The Play Doctors talking about Autism and the two packs of cards Wendy has created with us – Let’s Talk Autism All About Me & Let’s Talk Autism All About Me and Others.

Wendy has over 30 years worth of experience of living and working with people on the autism spectrum. Wendy has also written 11 books and writes and delivers training courses across the whole of the UK.

As always it was lovely to discuss tips about visual boundaries and talking about dinner time tips. See below for a re-cap of what else we discussed!

Review of Talking About Downs Syndrome Cards

unnamedI’m excited to share this lovely review with you all of Hayley Goleniowska’s Talking About Down’s Syndrome Conversations for New Parents by Caroline Playle.

Caroline Playle is a Mum to three children. One of whom has Down’s Syndrome. When Seb was born she was shocked to be told he had Down’s syndrome. She knew nothing about the condition, aside from outdated assumptions and stereotypes, and was full of unnecessary fear of what the future had in store for her family.

The reality could not be further from that vision. Caroline and her family lead a typical life together, facing the same joys, wonders, challenges and experiences as any family. Caroline started sharing snapshot’s of their lives together to show that Seb is a typical six year old who attends mainstream school, loves reading, football, chips and ice-cream and hates having his hair washed. Caroline shares that her son is a reflection of his family and upbringing, he is not a list of characteristics in a textbook and he is more like their family than anyone else with an extra chromosome 21 .

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What I love instantly about these new Fink Cards is their simplicity. The bold, confident colours and clear font makes them very approachable.

When I was told my baby had Downs Syndrome I threw myself into researching the condition. It was utterly overwhelming, so much information to take in at the same time as becoming a new parent. These Fink cards are absolutely perfect, they are beautifully concise and the card format means they can be taken in small chunks and you choose when and what feelings you wish to explore as and when you feel ready to take on more information. Plus we all know that talking helps with coming to terms with an out of the blue diagnosis. These cards encourage talking in a really gentle way. I can imagine these being so useful at support groups of parents with new babies, getting to know one another and sharing their experiences.

Best of all these cards are about YOU, YOUR baby and YOUR feelings. They are not telling you what will or will not happen, they are not filling your thoughts with all sorts of scenarios that may never come to fruition and they are not limiting your child or your child’s ability. This for me is the genius part of the idea. These cards allow you to explore your thoughts whilst keeping the focus on you and your child and not anyone else with Down’s syndrome.

My biggest regret when I was told my son had an extra chromosome 21was wrongly seeing him as “Down’s syndrome” instead of seeing him as my son. These cards will go a long way to allowing parents to take on board how they are feeling and where they are heading without the unnecessary fear and pressure of a stereotypical idea of what they might otherwise have thought lay ahead. I have no doubt this resource will go a long way to making sure new parents facing a diagnosis don’t miss out on precious, early moment by fearing an outdated or unknown future.

A really fantastic resource for any new parents faced with a recent diagnosis, their families, and medical and health professionals. I have even found them useful in exploring my own feelings, 7 years down the line!

For more information about Caroline please visit her Blog or find her on Twitter and Facebook.

 

 

Thoughts from Fink Africa

Abi and Uzo Fink AfricaFink Africa

In this post, Abi Adeyanju and Uzo Ijewere from Fink Africa share 7 tips for parents to help their children develop resilience to inevitable life experiences.   

PREPARATION; A KEY COMPONENT FOR EVOLVING KIDS

Parents whose children have been through the secondary system would probably agree with me that the emotional and physical state of mind of our primary school leavers is not so hard to detect. This is probably because they are eager and over excited about their move into new yet different territory. Read more

Relationship Questions On The Cards

Relationship QuestionsEveryone wants and deserves a happy and healthy relationship.

Good communication is an essential element to a happy and healthy relationship but

how do couples keep conversation interesting to prevent their relationship from getting stale and tired? Read more

Parenting Teens – No.1 Mistake

What’s the number one mistake parents of teens make in terms of how they deal

how to improve communication skillswith their teenagers?

I recently answered some question for the msn site and while the shorter version made it the long expanded one did not so I thought I would share it here.

The number one mistake that parents make with their teenagers is not changing their parenting style with them.

Read more

How do you naturally parent?

The Rhythms of Parenting

Recently, I have been thinking a lot about the natural rhythm of parenting and how it is different for us all.

effective communication with childrenI believe we all have our parenting flow or rhythm, so to speak, and for each of us it will be unique. However, what I think happens is that modern life takes over and we seem to be in one rhythm constantly and that is overwhelm and stress. Read more

Parent Leadership

How well are you leading your Child?

how to improve communication skillsParent as Leader. Parent Leadership. What does it really mean? Do you think that as a parent you are also a leader and if so, how do you go about that?

I have always found the words Parent and Parenting to be very emotive. For me, they bring up a feeling of exhaustion, frustration and a feeling of being stuck. I’m not sure if this is only me but I have never found these words at all inspiring. Read more

What to do if your child is caught cheating.

Cheating at School

what to do if your child cheatsWhy are we so surprised when children cheat? Did we not all do it; if there is a quicker way to do something won’t we all give it a go? It is human nature to find a quicker way of doing something that uses less energy but gets the same results. Back in our cave days it made lots of sense for us to do this. However morally, it leaves us with an issue as parents. How do we get the point across about teaching without putting our children off trying things in a quicker more efficient way? Read more

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