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.
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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?
She has campaigned tirelessly for inclusion, equitable education and healthcare over the years, and trains medics and teachers to this aim.
Hayley, along with daughter Mia, has published a book for children called I Love You Natty as well as contributing to many other books and publications, such as The Huffington Post, Special Needs Jungle, The Telegraph and Nursing Times.
She delivered a TedX Talk dispelling the myths around the condition and appeared in Sally Phillips’ BBC documentary A World Without Downs.
Hayley is often called upon to give comment in the media and she and her model daughter, Natty have popped up on The Lorraine Show, Channel Four News, Loose Women and more, but her stories always remain extraordinarily ordinary.
- Campaigning for inclusive education for children with Down’s syndrome - May 18, 2022
- Heidi’s Down’s syndrome abortion case: It’s complicated - November 10, 2021
- 21 Resources for Trisomy 21 on World Down Syndrome Day - March 21, 2018
I am a grandma of a little boy with Down’s Syndrome. He is gorgeous and is learning very well and enjoys playing with other children at Nursery. and his sisters. People make me sick with their opinions.
I guess I didn’t always know the facts about Down’s Syndrome, or all the right terminology before Natty was born, but I this level of insensitivity is something else isn’t it. We know the truth of course Yvonne.
My Mrs conceived our last child at the age of 38. At our first consultation we were offered amniocentesis. When we declined (our commitment to our child already made on discovering the pregnancy) there were looks of puzzlement and even shock. One person asked why not, we countered with why? They just didn’t get it.
This is something I feel so passionately about, the blanket assumtion of testing, screening, termination with no thought for a different path.
Thank you for exposing these myths, they are all ones we lived with as Sammy was growing up along with “they’re such happy children aren’t they.” Once again showing the lack of understanding that children with Down’s Syndrome are just that, children. I just used to gently inform people that Sammy could be as moody as anyone else and it was certainly not unknown for her to slam doors and stamp upstairs muttering loudly about the injustice of a situation (of course nothing was ever her fault, it was always her brother or sister that had done it). It is sad though that there is still this level of insensitivity and lack of understanding about Down’s Syndrome around as Natty is 33yrs younger than Sammy. Keep on going Hayley your doing a great job of getting the truth out there.
Thank you Andrea. I’m certain attitudes are changing, but little pockets of ignorance remain. Together we will keep spreading the word.
A wonderful post – as much as this is based around DS we have many a question when you say its genetic opening the doors for strangers to ask if we were ‘having anymore, are you having tests?’ I think sometimes people just talk without knowing what they are truly saying. x
I really think that people speak without thinking of the deeper meaning of their words Katie. Many of the comments in the post came from within my family or circle of friends and were not meant with malice, but they cut just as deep.
Many of the statements in the post above also apply more generally to SN. If autism was more ‘visible’ or genetically detectable, no doubt I’d have faced those questions too. Nice :-/
I often ponder the visible vs the invisible disability subject and conclude that each leads to its own hurtful onlookers/commentors whether they are making snap judgements based on what they see or not making allowances based on what they can’t.
Yes – I’ve never had a problem dealing with the more difficult behaviour, or odd behaviour, it’s always been other people’s reactions that have been hurtful, or made the situation much more difficult. I ended up buying t-shirts when my son was younger (he’s calmed down a lot now that he’s a teenager, thankfully) that said things like “I have autism, what’s your excuse?” etc., etc. My mother thought they were horrendous, but it helped me to cope with the situation and maybe it helped my son because people knew to make allowances? I don’t know. I still love my t-shirt that says “I’m a mum with a black belt in autism – bring it on!” 😉
Now THAT is a great T shirt!
My Brother Bruce just turned 53 last week:) HE does go to a work shop/Day Hab. Has been there 36 years .. In his days you received schooling until 16!! Then sent off TO where ever? We were very forfunite to have a ARC agency In Fitchburg MA who had bench work brought in … In time Bruce ran the front counter of a Cookie Jar /Bakery, Did Janitorial at Fitchburg City Hall & a Condo apt Complex ( & was treated as any employee) Now has sort of retired and some Volunteer work Meals on Wheels, Flower delivery, He is Captainof the slef advocacy meetings held each month,
Has Many Friends Goes on over night trips with agency, HE is Uncle Bruce – OR Cokkie man To Many!!!Bowls each week, Play mini golf in summer Has been to Disney at least 15 times in the past 22 yrs Since living with My self Betty & My Husband Frank,
Has no big health concerns, Has Bad Vision so couldn’t drive a car,But can handle his own Spending money Always a smile & has been a joy to our whole family. NOTE MY Parents were told Oct 1960 to put him away in a home & that was told froma DR!! NO way He lived with our parents until there death Dad in 1991-Mom in 1992 . HE is ny Buddy!! & my Life would be much less FUN without him in it,
Betty R, Westminster,MA
Great article, Hayley!
I think we’ll always come across people who think they have the right to question or pass remarks about our special needs children, whatever the disability.
As you know my daughter was not born to me and was with me for nine years before I had a child through a natural birth (my choice to wait). I remember taking our new baby for a walk on a lovely sunny afternoon and my daughter being absolutely delighted as she held onto the pram and helped me push him – a rather slow walk due to her cerebral palsy.. A neighbour stopped to coocoo the baby and then after glancing at my daughter turned to me and asked what I was going to do with her now that I had a child of my own? Was I still going to keep her? She took my breath away and I thanked God my daughter didn’t understand what this ignorant woman was saying, that the severity of her disability protected her from those cruel words.
Sometimes we have to grit our teeth and smile.
Education education education…
Oh Michelle! I wish I could reach through the screen and hug you right now. That is the most extreme example I have heard of people thinking our children are ‘replacable’. Simply inexcusable.
OMG, my mouth is still wide open at the adopting bit. :(. Well, all of it really. Quite a lot of this has been said to us about autism too, and if not said then definitely implied or thought – but not at such a young age, as our girl’s disability wasn’t obvious then. It still annoys me that people can think it’s catching, or something to do with how we parent our children. So ignorant. Well done us for battling on with our lives, eh?! 😉
Yes, well done indeed. Actually I’ve thought of a few awful comments since writing, but they were all born from the same myths so no matter. Like ‘I’m having all the tesing ‘cos I wouldn’t have time for one like that.’ (pointing to Natty.)
I live in New Delhi, India and we are still fighting against descrimination of children with special needs. Their integration in the mainstream is relatively new so people and society at large are prejudiced and don’t really know what to say when they come across a child with special needs. We try to educate as much as we can and I am sure few years down the line things will be better than now…!! Loved your post …
You are pioneers and what you are doing will change the world, one attitude at a time. Much love from the UK.
When I, aged 32 yrs, and my partner rocked up to our 1st ever 12 week pregnancy scan, wearing leathers (having come on a motorbike) and heard the words “Are you going to tell her, or am I?” we knew we were in for an unexpected ride….
But the biggest surprise and shock to me was not the diagnosis itself but that there was only 1 assumption made by the doctors we met…that we would not want to continue with the pregnancy! I was horrified that they offered me a termination there and then without any further testing to be certain of the cause of the large nuchal fold reading (which can be many things). And even when I went for CVS, the doctor performing the procedure said “We can all live with ourselves better if we find out for certain”….except that I was having the test because I needed to know exactly what we were dealing with to get prepared, not because I needed to justify termination due to an ‘adverse outcome’ (his words). I remember coming away from the hospital feeling really disappointed and sad – I thought hospitals were places to support people with medical issues, not be dealing with damn statistics and eugenics…and that little life inside of me seemed to have so little importance in their eyes….which just made me all the more protective of her! She’s 6.5 now, lives life to the full and enriches the lives of her family and friends and most of all her younger sister – they absolutely adore each other 🙂
I am not suprised by your powerful words, I have heard so many similar stories, but yet each time my heart feels cold and I am shocked. Reading this makes me more determined to change the level of support and guidance parents receive at point of diagnosis. I have comented on your wonderful blog but not sure if it got through.
This is such an important post, and I really hope it gets widely read, because so many of these myths still exist sadly xx
Yes they do, and about other conditions of course not just DS. Together we’ll keep reminding people to change the way they think. H x
I can’t believe the comments you’ve had. Well done for writing this, I hope it helps raise awareness of the facts around Down’s Syndrome.
Most said in innocence but it’s important to end the fear and ignorance about DS. Thank you.
Just love this article – it reminds me of the hurtful comments my Mum reported when my late brother was born with DS back in the 1950s. You’d think by now people would be more aware, but perhaps not!
This would be helpful reading for people who genuinely don’t know what to say when a friend has a child with DS.
I think we have come a long way and these comments are perhaps less frequent, but yes, there is still a way to go. I am sorry for your loss, I imagine your brother was a huge part of your life and brought a wonderful dimension to your family.
H
Thank you. Philip was such an integral part of our growing up I can’t imagine the family any different. Like my dad, he had the most wicked chuckle! Philip lived to be 50 and I was with him holding his hand when he died, peacefully, four years ago. One of the most precious moments of my life.
My son doesn’t have Downs but has several other disabilities, severe autism and a life threatening condition. He has crainosynostosis which has cause his face and head significant disfigurement. One thing really annoys me…. My son and I at the shopping centre and a little child, no older than 5years came over curiously looking at my son. He stood less than a metre in front of us just staring, which is fine after all he is just a child. Just as I was about to introduce him to my son, his mother came from no where and grabbed him and snatched him away, while in a loud stern voice said to her child “don’t be so rude, you shouldn’t stare”. I know she meant to do good but all I felt like were aliens!
Oh dear that is so hurtful. AS you say well meaning but people don’t realise they are reinforcing fear of disability with actions like this.
H
Even thirteen years on, it still shocks me how people can be so insensitive when talking about special needs and disabilities. It’s a lack of education and a lack of interest. Unless they have a disabled child themselves, they assume they don’t need to know about it, turn away and encourage their own children to play elsewhere. It’s a vicious circle.
Amy didn’t come out of nappies until she was 7 and I’ll never forget taking her to swim in a friend’s pool one summer day. Friend’s elderly mother took one look at Amy’s swim suit and said, “what’s that in her costume?” A nappy, I told her. “A nappy?”she screeched. “Why on earth is she wearing a nappy at her age?” It was the tone of her voice that upset me rather than the question – after all, it is a fair question. “So she doesn’t drop a log in your pool,” I answered. Friend’s mum pulled a face and looked at Amy as though she’d contracted the plague!
My own mum even said, when Amy was first diagnosed with autism, “she’ll grow out of it.” Unbelievable!
Oh dear oh dear, on so many levels. It’s all about education I guess but also perhaps certain members of the older generation thinking they have all the answers because it was that way for them.
Much love
H
Even 10 months later, it still shocks me when people say oh Lola’s physical disability will “vanish”. It wont- she will have a lifelong severe physical disability. One day I was struggling with Lola and the pram and a stranger came up to me. She looked at me and said” Do you want some help”. Best comment I got from a stranger, ever. I accepted her offer of help, gratefully. That lady made my day.
I think education is SO important. Not just about DS, about autism, CP etc. It is mind boggling when strangers have to make insensitive comments about children with disabilities. And, kinda annoying.
Yes, genuine help over a comment designed to make us feel better but which is not realistic is better any time. Thank you for reading Thara.
H x
My son was a week old when we were informed that he had Down’s syndrome. In a room with 2 doctors and 2 nurses, the first thing that they said was “are you going to keep him? You’d be surprised how many don’t”
It’s fair to say that set the scene for things to come, many comments of “so sorry” and 2 years later when we were expecting our 2nd child and refused testing, we felt bullied by the doctors but refused to give in. Josh is now nearly 14 years old and such a joy. I can relate to your comment about “what you see is what you get, no hidden agenda”. Truly an inspiration to everyone he meets. I have to say, so far, his schools have been amazing so….times they are a changing!
It seems we have all experienced those shaky starts, those less than sensitive comments, but from there positive things grow. Yes, Times, they are achanging indeed. Together we are making sure of that.
Amazing article, astonishing the comments you’ve recieved. I have a two and a half year old. If anyone had made any of those remarks to memI’m afraid I couldn’t have held my tongue. I think you’re fantastic for being able to do so. I think your a fantastic writer and I really enjoy reading all your various right ups, I look forward to reading more in the future.
Shelley
Thanks Shelley, your feedback was lovely to hear. I bet many of the families didn’t always bite their tongue, I know I struggle (as anyone who knows me will know to be true).
Thank you Shelley. I do think we’ve all heard some of those comments, and maybe made some too. A case for gently educating those who make them. Hayley