Fink Cards Enable Attitudinal Change and Positive Practices - Jim Blair Consultant Nurse reviews.

Talking About Down’s Syndrome – Conversations for New Parents 

By Hayley Goleniowska (2015)

published by Fink Cards ISBN 978-1-909002-29-6 price £18.99  Order directly from fink cards or call 01872 211782. Also available from Amazon.

Reviewed By Jim Blair, Consultant Nurse Intellectual (Learning) Disabilities at Great Ormond Street Hospital, Associate Professor Intellectual (Learning) Disabilities at Kingston and St.George’s Universities & Health Advisor British Institute of Learning Disabilities

‘Congratulations on the birth of your new baby.’ 

is the emphatic welcome message from Hayley to other parents of newly diagnosed babies with Down’s syndrome. Sadly all too often these are not the words that health professionals utter when giving news to parents that their child has Down’s syndrome. The reality is it is only an extra chromosome, so keep calm and carry on, yet society still conjures up images, visions and a future of little or no hope, worth or purpose for those individuals with Down’s syndrome. How very wrong that is.

Packs of Fink Cards contains import questions to prompt discussion

How health professionals give news is vital, and all too often the news that a baby has Down’s syndrome is not given in a positive supportive fact-based, humanitarian, focused manner. It is why the more health professionals know about Down’s syndrome the better. But also why a learning disability nurse, as numerous parents advocate, must be more involved in giving this news since they are best placed to give a fuller reality-based account of what Down’s syndrome means as a child grows up and evolves into an adult than other professionals who are not solely qualified to work with people with learning disabilities.

Hayley Goleniowska is a truly inspirational, dynamic, effervescent and innovative mother of two girls, one whom has Down’s syndrome and the other who does not. Having Down’s syndrome does not define who Hayley’s daughter Natty is just in the same way that not having Down’s syndrome does not define her other daughter Mia. Bob’s, Hayley’s husband and the father of both children, matter of fact approach that all would be fine is not what is experienced or said by other parents. 

These cards along with the excellent web site www.downssideup.com set up by Hayley to enable new parents to see that life will go on much as it was before, provides vital tips, stories, inspiration and love from her family to others.

These sets of cards are an extremely refreshing way for professionals to ensure that they get it right when meeting with and interacting with parents who have a child with Down’s syndrome. These cards acknowledge that each parent and family member will feel differently when they hear the diagnosis of Down’s syndrome for the first time. Each person’s emotions, thoughts, visions for the future and feelings upon hearing this news will be unique to them. 

The cards are used by parent support groups

The cards will, I feel, go a long way to assisting families and professionals in unraveling the mesh of feelings and emotions in a clear and compassionate way, by breaking down barriers and busting myths surrounding Down’s syndrome and permitting an open conversation and dialogue to flow. In this way the cards should enable new parents and families to get to know and understand their new child for the person they really are and not view them through the prism of a syndrome and others perceptions.

The cards which are bright, cheerful and visually appealing, cover a variety of difficult things to talk about and consider in a thought-provoking but gentle supportive manner numerous challenging questions and topics.

Fink Cards are divided into sections

The cards are separated out in to sections:

• Conversations for New Parents – containing tips about how to use the cards, their purpose and very personal supportive messages from Hayley from her own lived experiences.

• Your Baby- questions for parents to consider such as: Can you describe your baby in three words? Does Down’s syndrome define your baby? Have you kept your baby’s first outfit?  These questions along with others I imagine will be extremely helpful for new parents to make sense of the world they have entered which is for many not the one they contemplated. It will also enable health and social care professionals to gain a glimmer of light into what it is that is vital for parents of babies with Down’s syndrome since it was created by a parent for other parents.

• Diagnosis and Health – with questions such as Do other members of the family feel the same as you about your baby’s diagnosis? and What were your first thoughts when you were told your baby has Down’s syndrome? These cards get to the point quickly and in a focused manner. The fact that they have been created by one parent for other parents makes them singularly more powerful and essential for new parents as well as health professionals.

• Support  - questions such as Who do you talk to about your fears and worries? and Have you been told about any support groups? illustrate how essential it is for new parents as well as health professionals to consider why sharing and support are so pivotal to the early (as well as all) stages of having a child with Down’s syndrome.

• Life and Relationships – Have you discovered any new friends since your baby was born? Do people sometimes say things that hurt your feelings? How has your relationship with your partner changed since the birth of your baby? These and other such searching questions get straight to the core of the issues facing new parents and these cards provide a though provoking but neutral way of creating a space for individual and familial thoughts.

"These Fink cards should be given to all health professionals during their training to assist them in enabling attitudinal change and positive practices to flourish that cherish each child, young person and adult."

The most effective change and help is often created by those with lived experience. Too frequently health and social care professionals choose not to appreciate what wealth of knowledge, understanding and expertise these parents have. It is only through really engaging parents, families and people with Down’s syndrome in the education of health and social care professionals, service planning, design and evaluation will we truly experience services that are effective, responsive, well led, safe and caring. 

These exceptional cards should, if employed by health and social care educators in training as well as in practice and if given out to each new parent (what a wonderful gift to give to each new parent) by a midwife, nurse, doctor, health visitor or another health professional make a very real step towards a better health and social care experience for new parents.

We all need to see the person to experience their qualities and realise that everybody’s life has worth.

Jim Blair