Hayley Goleniowska is a friend of mine and she also writes a Down’s syndome blog, is a Huff Post writer and Special Needs Jungle columnist and a speaker, writer, advocate and Mum to Natty.
Here is her article in Huff Post.
October is international Down’s Syndrome Awareness Month, #DSAM2014, and while I am in no doubt that everyone is ‘aware’ of the condition, I do know that many myths and false perceptions abound.
I know because before our youngest daughter was born, I too was ignorant about Trisomy 21, and many of the comments that people have made to us over the years since her arrival, have portrayed their lack of understanding too.
I can’t change the campaign name to Down’s Syndrome Enlightenment Month, but I do think this is a fabulous time for advocates, charities and those with Down’s syndrome to join forces and gently challenge a few of the following stereotypes.
1) “It’s your old eggs you know.”
Myth: Babies with Down’s syndrome are born to older mothers.
Fact: The likelihood of having a baby with Down’s syndrome increases with age, but more babies are born with the condition to mothers under 35, simply because more babies are born to that group of women.
Down’s syndrome occurs in all races, cultures and social groups and I know two wonderful mothers who had their children with DS in their teens.
2) “Oh, didn’t you have testing then?”
Myth: Down’s syndrome is a mistake to be screened out.
Fact: For me, the most insensitive, upsetting, most often asked question. I actually don’t mind people asking if we knew our baby had DS before she was born, if we ‘had testing’. But saying, ‘didn’t you have testing?’ shows their underlying belief that if we had, we would have terminated the pregnancy, as 92% of prospective parents with an antenatal diagnosis do. Put another way, this question makes me think that you believe the baby I am holding in my arms shouldn’t be here.
More and more prospective parents choose not to test for Down’s syndrome antenatally, as termination would not be an option for them.
3) “I’m so sorry, that’s terrible.”
Myth: Life with Down’s syndrome is not worth living.
Fact: When we brought our beautiful baby home from hospital at three weeks old, many acquaintances didn’t know what to say. The very best friends were those who said congratulations, whilst acknowledging our worries, and brought the usual baby gifts, asked about her name and weight and what she looked like.
Those who expressed sorrow or worse still, said nothing at all, began to avoid us and eventually disappeared. As so often in life, this experience ‘sorted the wheat from the chaff amongst friends.’
While there are medical conditions associated with Down’s syndrome, no individual will have them all. These include heart and intestinal problems, visual and hearing loss, thyroid function fluctuations, leukaemia and Alzheimer’s. However, Down’s syndrome is very rarely a complex or severe disability. It is more commonly described by experts today as a ‘mild to moderate developmental delay’.
4) “You can simply say bye-bye, it’s been nice knowing you, have her adopted.”
Myth: Those with Down’s syndrome live apart from their families.
Fact: In the very early days someone suggested that adoption might be the way out of my fear and confusion when I expressed an uncertainty that I would be a good enough mother for our baby. In the past, many families were advised to walk away, and there are still a few who feel they cannot cope.
But thankfully with increased support and changing attitudes, most families realise that this is not an option for them. Children with Down’s syndrome lead full and fabulous family lives.
5) “Don’t worry, your breast milk will soon dry up after the shock you’ve had today.”
Myth: Babies with Down’s syndrome can’t breastfeed.
Fact: I desperately wanted to breastfeed both of my babies and although it took three months of expressing milk to feed through a nasogastric tube, we did learn how.
Not all, but many babies with Down’s syndrome can feed in spite of their low muscle tone, larger tongues and tiredness if they have medical complications at birth. The benefits include a health boost, increased bonding, optimum muscle training for later speech, immunity, protection from disease and some say increased IQ. I actually found that it gave me something to focus on while during our baby’s short hospital stay. It stopped me feeling quite so helpless.
6)”Oh, my neighbour’s got a Down’s baby too!” … “I’ve got one of them at home.”
Read more http://www.huffingtonpost.co.uk/hayley-goleniowska/downs-syndrome-misconceptions_b_5951198.html?&ir=UK