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12 Common Misconceptions About Down's Syndrome

09/10/2014 09:53 BST | Updated 08/12/2014 10:59 GMT

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."

Myth: The syndrome defines the person.

Fact: It's important to talk about all children as individuals and to focus on them as a person first, not simply a diagnosis, saying , 'a child with Down's syndrome' instead.

The choice to say Down's syndrome or Down syndrome incidentally is as personal as your choice to wear 'trousers' or 'pants', to drink tea or coffee, to drive on the left or right. It depends on which country you live in.

All children are unique and will look more like their family than any other individual with the same number of chromosomes, although there will be little similarities such as smaller almond-shaped eyes, shorter limbs, often a single palm crease and sandal toe gap between the big toe and the rest. They will absorb the culture and beliefs of their community and have their own personality traits, likes, dislikes and interests.

7) "They are so musical and loving aren't they!" ... " I taught a boy with Down's and he was so stubborn." ... "Oh, they're so cute."

Myth: Children with Down's syndrome are all alike.

Fact: Show me a happy child who doesn't enjoy music or a cuddle with their family. And who isn't stubborn when they don't want to do something, particularly if they don't feel they have a choice, or a voice in the matter. As for cute, well Natty is rather cute now as all six years olds are, but to call a teen or an adult cute is quite simply patronising.

Individuals with Down's syndrome are fully rounded individuals, experiencing all the emotions, joys and pains, excitement and depression that we all do. The only thing Natty does differently from her sister is to live right in the moment. There is no pretence or hidden agenda. What you see is what you get with her. A valuable life lesson for us all perhaps.

8) "He could speak really well until he caught it." ... "Does your other daughter have Down's syndrome too?"

Myth: Down's syndrome is a disease that can be caught or cured or is hereditary.

Fact: You cannot 'catch' Down's syndrome. It is not a disease, nor is there a cure. Individuals are not 'victims', do not 'suffer from' it, nor are they 'afflicted' in any way. It is due, most commonly, to the presence of a complete extra chromosome, number 21, otherwise known as Trisomy 21, and no-one knows why it occurs.

Trisomy 21 occurs at conception and the reason remains unexplained. No-one is at fault. Nothing you did during pregnancy will have made a difference.

Rarer forms of Down's syndrome are Mosaic DS, where some cells have portions of the additional genetic information and others do not, and Translocation where the additional chromosome 21 is broken up and attached to many other chromosomes in sections. For only a tiny percentage of those with Translocation only, is it genetic and transferred across generations.

9) "I worked with a Down's man who died when he was 45. That's REALLY old for them you know."

Myth: The life expectancy of a person with Down's syndrome is less than 40.

Fact: A baby is a baby to love and enjoy. New parents should be allowed to enjoy that time without having to look too far onto the horizon. However, life expectancy for adults with DS is increasing year on year with medical advances, and is somewhere between 50 and 60, with many living into their 60s and 70s. Sadly much medical information available online and in books is extremely out of date.

10) "Is she like normal children?" ... "I wouldn't have time for a child like that."

Myth: We need to define everything according to a 'norm' and fear those who are different.

Fact: The good old indefinable word 'normal', belying our need to package everything neatly into pigeonholes. Our daughter is more like children her own age who don't have Down's syndrome than different to them is the answer to that one, I guess.

She loves cake and chocolate, riding her trike, nags me to take her swimming daily, adores playing with her friends, watching a film with popcorn, dancing with friends, annoying her sister and so on.

11) "Some of them even go to school these days."

Myth: Children with Down's syndrome are ineducable.

Fact: Children with Down's syndrome started to attend mainstream schools in the UK in 1981. They were given a right to an education in schools only in 1971 - before which they were deemed "uneducable".

Schooling and education is another matter that is highly individual and each child's needs should be looked at before making decisions. But certainly all children with Down's syndrome enjoy an education whether it is at home, at a special school or in mainstream schools. The benefits of mainstream school are immense, for inclusion is a two-way street and all children reap the rewards.

12) "You must worry who will look after her when you're gone."

Myth: Those with Down's syndrome are a burden to their families and society.

Fact: With early intervention and good support, adults with Down's syndrome are leading increasingly independent lives. Having jobs, their own homes, relationships, mortgages, managing their own budgets and so on.

They are not a burden.

Working towards life and self-help skills has always been a priority for me and I feel happy in the knowledge that our daughter has a loving network of family and community around to support her. One day she may choose to live with friends, a partner, get married or stay at home.

I will be happy either way and I wouldn't change one single thing about her, for she makes our world a better place.

Hayley Goleniowska writes about life with Down's syndrome over on her blog Downs Side Up.