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.
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