And now for a bit of mutual admiration as we introduce our third new columnist. We love the DownsSideUp blog by Hayley Goleniowski, and when we were thinking about who to ask to join us, she was a natural choice. Whether she’d want to or not, we had no idea – her blog is hugely successful in its own right for its honesty, integrity and readability.
So we were so excited when Hayley agreed to come on board and today is her debut, very excellent, column. Read on and welcome her in the first of, we hope, many columns.
I was so proud, if not just a little nervous, when the authors of my most respected blog, Special Needs Jungle, asked me to contribute a regular column to their site.
I always find the first of anything difficult to write. I want to make the right impression, gain your interest and engage you all to have a chat about the topic at hand. But by the same token I want to bring something unique to the table.
As my first post coincides with Down Syndrome Awareness Month in the USA and as a Mum to a little girl with the condition, I thought I might focus on what Down’s syndrome isn’t. And is.
Posters and leaflets dispelling common myths and setting out facts about Down’s syndrome are often created wonderfully by charities to distribute to new families. So rather than reinventing the wheel, I thought I’d highlight a few quotes that have been said to me over the years, think about the subtext behind them and use them as a springboard for explanation of the realities.
“It’s your old eggs you know.”
(Myth: Babies with DS are born to older mothers)
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.
I know 2 wonderful mothers who had their children with DS in their teens and Down’s Syndrome occurs in all cutlures, races and social groups.
“Oh, didn’t you have testing then?”
(Myth: Down’s Syndrome is a mistake to be screened out.)
For me, the most insensitive, upsetting, most often asked question. I actually don’t mind people asking if we knew Natty 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 a diagnosis do. Many prospective parents choose not to test, as termination would not be an option for them.
Put another way, this question makes me think that you believe the baby I am holding in my arms shouldn’t be here.
”I’m so sorry, that’s terrible.”
(Myth: Life with Down’s Syndrome is not worth living.)
When we brought Natty home from hospital at 3 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. I often describe Natty’s arrival as having ‘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.
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’.
“You can simply say bye-bye you know, it’s been nice knowing you. You know, have her adopted.”
(Myth: Those with Down’s Syndrome live apart from their families.)
When Natty was a couple of weeks old someone suggested that adoption might be the way out of my fear and confusion. In the past, many families were advised to walk away from their babies with DS, 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.
“Don’t worry, her breast milk will soon dry up after the shock she’s had today.”
(Myth: Babies with Down’s Syndrome can’t breastfeed.)
I desperately wanted to breastfeed both of my babies and although it took three months for Natty to learn, with expressed milk being fed through a nasogastric tube, she did eventually get there. This midwife who said this to my husband made a terrible assumption.
Not all, but many babies with Down’s syndrome can feed in spite of their floppiness, 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 our baby didn’t feel like ours during her hospital stay. It stopped me feeling quite so helpless.
“Oh, my neighbour’s got a Down’s baby too!”
“I’ve got one of them at home.”
(Myth: The syndrome defines the person.)
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. ‘They’ are not a seperate species, nor an item of household hardware which requires a manual!
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. I find it hard to understand why some people get so distracted by an apostrophe (and I speak as a former grammar teacher).
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 palmer 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.
“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.)
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 6 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 lesson for us all perhaps.
“He could speak really well until he caught it.”
(Myth: Down’s Syndrome is a disease that can be caught or cured.)
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.
“Does your other daughter have Down’s syndrome too?”
(Myth: Down’s Syndrome runs in families.)
No, she doesn’t. 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.
“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.)
I cannot think of any time it is appropriate to discuss a few week old baby’s life expectancy in a supermarket with their mother. You would never bring up their statistical likelihood to become a criminal or have drug dependency issues or one day become divorced, after all. 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.
“Is she like normal children?”
(Myth: We need to define everything according to a ‘norm’)
The good old indefinable word ‘normal’, belying our need to package everything neatly into pigeonholes. Well, Natty 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 puppy Pippin, watching a film with popcorn, dancing with friends, annoying her sister and gets excited about Santa and the Tooth Fairy coming to visit.
“Some of them even go to school these days.”
(Myth: Children with Down’s syndrome are ineducable.)
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 in the class reap the rewards.
“You might be used to your child being in hospital, but it was horrible for me.”
(Myth: We worry less about our children because they have a disability)
However often our children undergo therapies or operations and hospital visits, we worry as much as the next parent. We might get used to the routines and we are excellent at communicating with doctors, but our children are as precious to us as those who only visit a hospital once in their lifetime, and we are just as terrified each time.
“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.)
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 Natty’s life and self-help skills has always been a priority for me and I feel happy in the knowledge that she has a loving network of family and community around to support her. One day she may choose to live with friends or she may decide to stay at home. I will be happy either way.
“You have to give them something to stop their sex drives, don’t you?”
(Myth: Adults with learning disabilities are to be denied sexual relationships.)
I wondered whether to include that statement, but it was said to me, again when Natty was just a matter of weeks old.
Adults with Down’s syndrome, in fact any learning disability, are entitled to and can enjoy close relationships if they choose. Many live together with partners, enjoy dating or get married. To deny that is to deny a basic human right.
It’s odd how having a child with a disability suddenly makes you public property, how everyone you meet becomes a mini-expert with an opinion, but I have never shown my upset or shock at any of these intrusive questions or statements.
I simply draw people in to chat, throw in a few truths and hope they leave a little wiser. That’s not to say I didn’t retreat and cry in the early days though, sometimes only just making it back to my car parked in the supermarket or school car park in time. My skin grew thick very quickly.
How do you deal with ignorances and insensitivities from those around you?