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Talk about Down’s for World Down’s Syndrome Day

21 March 2015 No Comment

Hayley and familyHayley Goleniowska publishes conversation cards to break down the myths surrounding Down’s syndrome and allow new parents to get to know their baby for the unique individual they are. Around two babies with Down’s syndrome are born in the UK each day and Hayley Goleniowska’s “Talking about Down’s Syndrome, Conversations for new Parents” is a vital tool for parents as it allows them to appreciate their new baby for the individual he/she really is. The aim is to help new parents of children with Down’s syndrome cut through the old stereotypes, provide them with vital early years support and give the child a great start in life. The “Talking about Down’s Syndrome, Conversations for new Parents” cards are being launched today, World Down’s Syndrome Day. Read on to find out about Hayley’s own experiences.

So, you hear the news that someone in your family, a close friend or an acquaintance has given birth to their baby. Great news!  

 But within seconds you are told that the baby has Down’s Syndrome.  

 “Oh…. “

There follows a mixture of disbelief, shock, stunned silence, anger, hurt, disappointment, perhaps a feeling that a sixth sense told you so, a desire to ‘fix things’ or even, perhaps if you are young you just don’t understand. Perhaps if you already love someone with Down’s Syndrome, a sense that this is not the end of the world, that you will gently guide them.

So what do you say and do?

When our youngest daughter Natty was born with the condition we experienced the full range of responses from family and friends. So I can tell you what worked for us…

1)  Don’t be afraid to say something.

This is where Natty’s entrance into the world really sorted the wheat from the chaff amongst friends.  Longstanding friends didn’t know what to say and soon disappeared, awkward and embarrassed.  Those we’d got to meet relatively recently stepped up to the mark, supported, helped, offered childcare during our never-ending trips to the hospital.  Family drove through the night to meet her, in shock, but there.

If your words are meant with kindness, they will help.

2)  Congratulate the family on the arrival of a beautiful new person in the world!

My husband popped the cork on the bottle of vintage champagne we had bought for the happy event anyway.  We toasted our daughter who lay in an incubator in intensive care that night, even though that was the last thing we really felt like doing.

Send a card of congratulations, send a small gift for the baby to have near her if she is in hospital, buy a small pack of toiletries or wholesome snacks for parents spending many hours in hospital or purchase a pretty coolbox for mums transporting breast milk to and from hospital twice a day.

Ask to see the baby or a photograph, ask if s/he has a name yet, how much she weighs, how the birth went, in fact anything you would normally ask any new parent.

3)  Be realistic

When people acknowledged the challenges ahead of us and our feelings of desperation, it made us take their words so much more seriously.  Over-optimism can be very insincere after all.  Understand that the parents are perhaps grieving the loss of the healthy baby they were expecting, although everyone will feel differently.

The midwife who said “None of us want this for our children, but she is beautiful and you will cope.”

Another who countered my “I don’t want to love her because I am afraid she’s going to die,” with “That baby needs your love my dear, whether she lives or dies.  So get to that hospital and give it to her.”  So very wise and true.

“It will be hard but I will help when I can.”  “She is looking a little stronger/better than when I saw her last.”  “I can’t imagine how you feel….”  all delivered with hugs from friends.

But be prepared for any advice you give to be ignored. I didn’t once ever contact any friends of friends whose phone numbers were passed my way simply because their children had the same number of chromosomes as mine….

4)  Avoid outdated language and clichés

Just say the baby HAS Down(s) Syndrome.

S/he is a baby first and foremost.  S/he will have the features and traits of her family before those of any other child with Down’s Syndrome.  She will follow their path, learn their traditions and values, and be dressed the way they want her to.

S/he is here.  Don’t ask endless questions about ante-natal testing.  (You might also want to avoid mentioning the mother’s age or the state of her eggs!  One of the loveliest DS Mums I know was 18 when her little girl was born…)

The baby will be a lot more than ‘loving and musical’ because ‘they’ are loving and musical aren’t they.’ He or she will be a fully rounded individual with his or her own likes and dislikes.

The child will of course go to school, live with their family, enjoy friendships and relationship and all the other things that any baby can look forward to.

Families might need your support. Breastfeeding will take time to learn, there will be many medical appointments but patience is all it takes, and you are there to help.

 The questions on the latest pack of Fink Card Talking About Down’s Syndrome – Conversations for New Parents contain a section of welcoming the new baby and getting to know them for the unique individual they are. Friends and family might find these questions helpful.

The innovative conversation cards are designed to encourage parents to interact and talk about a range of topics including receiving a diagnosis, getting the support their family needs, bonding with their baby as well as looking after themselves and their relationships.

The cards contain 48 compelling questions which parents can talk through together one-at-a-time and which enable them to discuss important topics at appointments, support group meetings or when engaging with other parents who have a child with Down’s syndrome.

The “Talking about Down’s Syndrome, Conversations for new Parents” cards are published by Fink, priced at £14.99 and can be ordered by visiting www.finkcards.com or phoning 01872 211782.

Visit www.downssideup.com for more information about Hayley Goleniowska or visit www.worlddownsyndromeday.org for more about World Down’s Syndrome Day.

 

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