Siblings, Screening and the Sillier Side of Life: Sally Phillips and Hayley Goleniowska Chat About Down's Syndrome to Challenging Behaviours Podcast

Check us out! At the glowing age of *ahem* the latter part of our 40s, my friend Sally Phillips and I are dipping our toes into the podcast pond! First Sally learnt about 'gaming' wearing 'on fleak' fingerless gloves and a beanie hat, and then we were guests on the cutting edge Challenging Behaviours Podcast! 

Sally Phillips and Hayley Goleniowska chat about siblings, screening
and the sillier side of life with Down's syndrome to the CB Podcast team

I think we are officially 'down with the squad' or whatever the current vernacular is.

In all seriousness though, Challenging Behaviours Podcast is a cutting edge talk show taking the discussion around learning disability and disability into new territory. The programme is run by pioneers Jack, Adam and Tom who bring an ecclectic wealth of knowledge and experience to the mic.

Book Giveaway: A Major Adjustment

Just over 11 years ago I read a book that changed my life. You could win a copy and it might just change yours too (entry details at the bottom of the page). 

Win a copy of A Major Adjustment by Andy Merriman

World Down Syndrome Day 2018: What I bring to My Community, Because Inclusion Matters

I couldn't be more excited about this year's themes for World Down Syndrome Day. It's always celebrated on 21st March, which, as you all know, represents the 3 copies of chromosome 21 that are present in those with the condition.

The organisers are asking you to join in and share #WhatIBringToMyCommunity stories, the Down's Syndrome Association are reiterating that #InclusionMatters, whilst Mencap are campaigning for equal quality healthcare for all with their #TreatMeWell campaign. 

These are all topics that we can get involved in and shout about on our social media timelines, these are important issues that are relevant to us all, and here at Downs Side Up we're helping you reach a wider audience by linking your #WDSD2018 blog posts up as well. 

There are educational and powerful videos galore, like the 50 Mums, 50 Kids, 1 Extra Chromosome shown below, that's guaranteed to put a lump in your throat. 

There are also so many new books launching this week that you might need the rest of the year to plough through them. Try A Major Adjustment by Andrew Merriman, the sequel to A Minor Adjustment for starters. 

There's a whole host of fun events to dip in and out of as you wish: You can don your funkiest socks - "for we are all colourful and unique", you can offer random acts of kindness to strangers, you can fundraise by running a marathon or take part in a dance-a-thon to show your joy through the movement of your body.

Or, like me, you can sit at home and write or share as many educational articles and stories in celebration of all that is wonderful about that extra chromosome. Watch out for our articles and infographics, featuring as many of you as I could, in Mummy and Me which will feature Ayyub Kasia and his friends, Huffington Post, Firefly and Special Needs Jungle this week. 

Ayyub Kasia with his friends at their mosque
Ayyub Kasia is a valued part of his community

You can also write for your local newspaper or magazine, or do an interview on your local radio station. And you can signpost support to new families, show them the way as others did for us, and make new friends around the world.

Surely that is what World Down Syndrome Day should be all about, bringing our community closer than ever, strengthening links and reaching out to one another. 

And so my dear Down's syndrome family, one that I am ever so grateful to be a part of, please do add your stories, your videos and your enthusiasm to the linky below. 

TedX: Down's Syndrome - Beyond the Barrier of Fear

Ted, and the independently run TedX events, are a worldwide series of talks based on 'ideas worth spreading'. You may be a huge fan, or equally may never have heard of them. 

Watch or read the transcript of Hayley's talk below and
explore the list of other recommended talks. Photography @verityWestcott

Just over a year ago I was asked if I would like to do a TedX Talk at the local TedX Truro event. I jumped at the chance with a mix of pride and excitement at first. This was a massive honour, a big challenge, but I hoped I was up to it. I've been a huge fan of this international network of talks for years, often turning to them to lighten mood, become inspired, fuel curiosity or learn more while going about my chores, instead of having the radio bumbling away. I've learnt so much from thewide range of speakers.

Ted says we each have a story inside us and that the world becomes a smaller, kinder place if we listen to one another's tales. Apparently 13-18 minutes is the perfect time slot to inspire  or educate someone who is not an expert in your field.

TedX Truro 2017

And then the fear set in 

I've done a smattering of public speaking before, but this time the notes and comfortable safety of a podium were to be stripped away. I suddenly realised how vulnerable standing alone with my story in a spotlight in front of a theatre full of strangers would feel.

Next, the magnitude of being given this soapbox from which to publicly share something vitally important to me hit home. This would be a talk that would stay around for ever, it would be watched and liked but also criticised. This was my big chance to change the way the public view Down's syndrome, to remove the fear. I had to make each word count but it would be very exposing on a personal level.

We were given the event heading of Beyond Barriers. I dutifully went of and drafted what turned out to be a fairly uninteresting essay on barriers, the TedX Truro team politely nodded and asked me to go back, ditch what I thought Tedx wanted to hear, and simply write my own story. 

I should have remembered the wise advice of Her Melness Speaks "Find your own voice and remember your original motivation and stick to it."

Several edits, some public speaking coaching and various practice runs later, that's exactly what I did. The day of the event drew nearer and what I hadn't factored in was how difficult it would be to learn the talk and deliver it without any prompts. No matter how hard I tried I just couldn't do it. 

The panic began to rise. My brain tried to protect me and suggested all manner of reasons why I should give up. It even made me lose my voice and develop flu-like symptoms. No-one would notice if I didn't present that day after all, would they. I considered opting out?

Turns out this was like a marathon runner breaking through 'the wall'. I had hit the public speaking wall of fear. Friends encouraged and advised, I rested and somehow, with the help of aide memoires such as dance moves, post its all over the house and lots of mental imagery, most of it stuck after a fashion.

It was terrifying, petrifying, mouth-dryingly frightening. But I'm so glad I overcame my personal barrier of fear, to deliver a talk that will hopefully enable others to overcome their fear of a little extra chromosome and life's wonderful differences. 

I'd love you to watch the talk below, and share if you feel you can. 
And consider; what would you say if you had 15 minutes to share your story?

Hayley Goleniowska overcoming her fear to speak at the TedX Truro event

Overcoming the Fear of Down's Syndrome - The Transcript

"As long as the baby's healthy"

This is my personal and sometimes emotional story. Yet in many ways it’s an ordinary story too, with elements which may be shared by many of you.
11 years ago, I was expecting our second, much-wanted baby. The one we’d imagined in our mind’s eye, the one who’d clung to pregnancy as so many before her had not.
So big girl Mia and I toddled and waddled around, chattering about the new baby in Mummy’s tummy, as we washed and folded tiny clothing in anticipation.
We "didn’t care what the sex of the baby was, as long as it was healthy", and naively we thought that was all that was important.
Scans, expensive multivitamins and a doula on stand-by had bought us the ‘peace of mind’ we thought we needed.

"My subconscious protected me"
Two weeks before her Christmas due date, our youngest decided to make an early entrance into the world and we calmly put our plans for a home birth into action.
Mia went to stay with her beloved Godmother, and Bob warmed our draughty old house... and for some reason took it upon himself to spread industrial plastic sheeting over all the furniture. I'm not really sure what he was expecting - presumably some kind of ‘baby cannon’ 😮 
A nest of pillows and gentle words of encouragement welcomed our little one into the world.
She arrived easily, all at once, but floppy, silent, and blue.
There was panic in the air from the professionals. Or maybe looking back it was ‘urgency’. An Emergency.
My mind froze, I was unable to ask a question, my subconscious was doing what it felt best to protect me.
Bob waited in his shorts in a freezing December lane for the ambulance he’d been instructed to call, but it wasn’t just his breath that froze, time too stood still as he waited for medical assistance, not knowing whether his newborn was clinging to life inside the family home.

"Our midwife cried"
On arrival at the hospital, Bob proudly carried our baby in from the ambulance, where she was taken to NICU so that teams could work to stabilise her. He insisted on staying nearby and I was left in a side room with our doula to recover from the birth.    
After a while I began to realise that I was being avoided. Midwives’ floated through my space attempting jovial small talk and wearing that kind of smile people use when they feel sorry for you… Or, when they are nervous about telling you some unexpected news.  It had to bad news?
A desperate panic steadily rose in me. I urgently asked: Was she alive? What was wrong? Where was my husband?

After what seemed like an eternity but was probably around 5 hours, we were finally rejoined, in that clinical maternity room, distant and physically removed from our precious baby. A consultant arrived and formally uttered the words we had dared not allow ourselves to contemplate:
‘I’ve looked at your baby… and I think she has Down’s syndrome… ‘
Our midwife cried.
(A congenital heart condition was later identified, the cause of her early fragility.)
A tedx talk takes you through the full gamut of emotions

"My ableist subconscience took over"

At this point my body went into physical shock, but my brain went into overdrive:
Had I forgotten to take a vital supplement?
Was it my age, or the shell-on prawns I’d craved?
It had to be my fault after all.
- I was consumed with wanting to know what the impact on Mia would be.
- Would her daddy leave us?
- Would we ever have another family holiday?
- Would she marry?
- Would she even go to school?
- I imagined she’d be forever quiet and ignored, wearing a uniform of a Mickey Mouse T shirt, glasses that slipped to the end of her nose and a national health haircut J?!
My ableist subconscience had taken over.
"Society either pities, 
patronises or punishes 
those with a disability"

It’s important to pick through why and how I came to feel this all-consuming fear, because I was so very wrong.
As a society we have created a tragic myth with a protagonist called ‘Down’.
Medics say they are "sorry" as they tell us "probabilities of risk" for our baby having Down’s syndrome and describe the condition as a list of medical characteristics which they like to cheerily call co-morbidities.
When pregnant, we women pass the baton of fear from one to another without any real lived experience.
Our society either pities, patronises or punishes those with a disability, and the mainstream media depict Down’s syndrome like a cancer to be eradicated.
And, in my case, there was the distant, and slightly unsure memory of my grandmother, Gladys steering me across the street as a young man with Down’s syndrome and his mother walked towards us, their heads bent in realisation of what was happening...
‘He’s not quite all there…’ I think she whispered.
Words shape our thinking and the picture painted for me was certainly one of no hope.
Not because of an additional chromosome, but because of a constrictive narrative created around that one aspect of our baby's being.
It stole the unconditional element of my love. I decided that if I could somehow not love our baby with all my heart, then I would be spared the pain I imagined I would feel if we lost her.
It took a wise midwife to tell me to pour that love out, because our baby needed it whether she lived or died.

"I wouldn't have time for 'one of them'"

That midwife was the first of a safety net that was immediately thrown around us by those who cared…
NOT the folk who told me special babies are only born to special parents… or that God wouldn’t have given me any more than I could handle!
Nor those who taught me the hard way that this is a condition everyone has an opinion about. And that even though you don’t ask for their outdated nuggets of misinformation – you will get them, mostly within the first weeks of your baby’s life:
“Ah, they’re so cute, musical and loving. I wish I had one.” ( I wonder if that person has ever heard Natty sing! Or if she's bought herself a puppy)
“Babies with Down’s syndrome struggle to breastfeed but don’t worry, your milk will soon dry up after the shock you’ve had anyway.” (Natty did learn to feed after 3 months of expressed milk through a nasogastric tube.)
“One lived up my road and died when he was 40. That’s really old for them you know!” 
(It wasn't appropriate to discuss the life expectancy of my newborn, and also the figure is into the 60s these days with many people with Down's syndrome living into their 70s with the right care and support.
And the comment that still stings from a pregnant acquaintance who proudly announced, while pointing at Natty in a pushchair; “I’m having all the tests going, ‘cos I wouldn’t have time for one of them.”.

"Medical angels helped us 
believe in ourselves"
Sorry, I digress, No - the true mentors were wise parents further along our journey who told us it would be OK.
Family such as my Mum and brother who drove through the night to be with us.
Friends who turned up uninvited with food to cook us a meal and celebrate our baby’s arrival, while others faded away, not knowing what to say.
The medical angels who not only saved Natty’s life but helped us believe we could do this, (usually during late night chats over mugs of milky tea.)
But the greatest of all teachers of course have been big sister Mia, and Natalia herself. Natalia Hope as we decided to call her.

"Our children were 
our greatest teachers"
These 2 small children dismantled our fear and replaced it with oodles of love, pride and acceptance.
Natty of course was unaware of the stigma strapped to her genetic makeup and she melted our hearts in her own inimitable way.  
The words Down’s syndrome weren’t laiden with any meaning for Mia and her only question at two was when her baby sister was coming home from hospital so she could help me bath her for the first time.
These two girls had an immediate bond and whilst I was trying to map Natty’s entire life in her first weeks of being in our world, they took each moment as it came.

"Down's syndrome is beautiful"

Together we have learnt that Down’s syndrome is:
- Beautiful (Natty was to become one of the UKs first models with a disability, featuring in a national supermarket back to school campaign 3 years ago),
- Caring (Natty just knows when someone needs her wisdom. Like offering a knowing calm smile, a hand on the knee and ‘it’s OK’ to me this morning.)
- Brutally honest with hilariously funny outcomes (“I like your breasts” “The lady has a nice dress you say?” “No Mummy, I said nice breasts.”)  
- Determined and inventive. Natty took longer to reach milestones but her favourite phrase is ‘I can do it BY myself”. Before Natty could say I Love You she made up the signed phrase "You happy me" using Makaton.)

"There have been challenges"
Of course there have been challenges. Natty underwent keyhole heart surgery at the age of two, the most terrifying time of our lives.
Natty is also small for her age and needs support when communicating, but what we have learnt is that very little will prevent her from being the best she can be when given the right opportunities and when the limits that exist in others’ minds are lifted.

"I might have missed out
 on being a Mum to 
such an incredible little girl"
Natty is not ‘inspiring’ or ‘special’, but she is an essential part of our family which makes me reassess what we all value in one another.
Why is IQ so much more important than EQ (emotional intelligence)?
In the perfect blend, surely there is a role for everyone in society, so the ability to pass exams with flying colours and the skill required to make a room erupt with laughter with a silly dance, a funny expression and a well-timed comedy fart, should be equally revered!
Grandma Glays would have displayed photos of all her great-grandchildren

What frightens me is that I might have missed out on being a Mum to such an incredible little girl, that this might not have been what I 'chose' to sign up for.
And more than anything I wish that grandma Gladys had lived to meet Natty.
She’d be boasting to all who’d listen about her great grandchildrens’ achievements, and their photos would be displayed proudly on her wall.
She would have gloated over how they all took after her in some way or another and her life would have been enriched by having each of them in it.
But most of all I know that Natty would have taught her not to fear those on the other side of the road...

"Don't fear those on the 
other side of the road"


Top TedX Talks about Down's Syndrome

Karen Gaffney - All Lives Matter - Karen has an honorary doctorate and has swum the English Channel. She also has Down's syndrome.

Sarah Gordy - Escape From Labels - Sarah is an actor and has featured in Call the Midwife, Casualty and more, aslo working to educate medical professionals. Sarah has Down's syndrome. 

Sarah Gordy at TedX Hackney Youth

Jeff Smith - Receiving My Dreams - Jeff is the writer and director of a film about his profound life experience of losing his mother, called Save Me Mine. 

Caroline White - Changing Attitudes and Shifting Perceptions - Caroline is Mum to Seb, a model who has Down's syndrome. She is also an author and advocate. 

Lito Ramirez - Shifting Great Expectations: Parenting a Child with Down Syndrome - Lito is a Dad and CEO of DownSyndrom Achieves.

Deborah Love Bradshaw - The Eradication of Down Syndrome - Deborah is a Mum and speaker, author and educator. Here she muses on what we might stand to lose if the extra chromosome is eradicated.

Emmanuel Bishop - A year in Pictures - Not a TedX contributor yet but really worthy of including in this list, Emmanuel is a self-advocate, concert violinist, golfer and public speaker who also has Down's syndrome.

And if you're thinking of telling your story for TedX, 
here's the book to get you started. 

Don't forget to nominate great speakers for next year's event here. 

Do We Really Need Makaton?

Depending on where you live in the world, you will most likely be recommended to begin to use a system of signing when your child with additional needs is young. 

It's not unusual for parents to question the usefulness of Makaton

Portage workers advised us to use Makaton with Natty, but I had very mixed feelings about it at first. This is just our experience, every child's journey is different, but it might answer some questions you have if you're new to signing.

Simple Solutions for Sore Lips by Sarah Murphy

Natty really suffers badly from dry, cracked lips in the Winter. After years of experimenting, I've finally found a solution that works for us, but they require several applications of lanolin a day to prevent chapping. 

As this painful problem is common to many children with Down's syndrome, I asked friend and registered naturopath Sarah Murphy ND to share her tips for lip health for the whole family this season. 

Ways to combat the discomfort of dry, cracked lips this Winter

What to Say When a Baby is Born with Down's Syndrome

So, you hear the news that someone in your family, a close friend or an acquaintance has given birth to their baby. Wonderful news!  

But within seconds you are told that the baby has Down's syndrome.  

"Oh.... "

Baby Natty 

There follows a mixture of disbelief, shock, stunned silence, anger, hurt, disappointment, perhaps a feeling that a sixth sense told you so or a desire to 'fix things'. Maybe perhaps if you are young you just don't understand and those of us who are older in years might have a clear visual image of what we expect it to mean based on stereotypes

However, if you already know and love someone with Down's syndrome, you will have a sense that this is not the end of the world, that you will gently guide and support this family.

So what do you say and do?

Before Natty was born I had never been in this position in my life... But I can say with equal measures of honesty that we probably experienced the full gamut of reactions from those within our social circle in the weeks immediately following Natty's arrival. This is what worked for us...

Everyone is different of course, and this is never truer than in matters of pregnancy and birth, but whatever thoughts and emotions you are experiencing as onlookers, the parents will have already gone through them 100 fold.  Yes, all of those feelings.

Try our conversation starter cards from Fink

1)  Don't be afraid to say something  

This is where Natty's entrance into the world really sorted the wheat from the chaff amongst friends.  Longstanding friends didn't know what to say and soon disappeared, awkward and embarrassed.  Those we'd got to meet relatively recently stepped up to the mark, supported, helped, offered childcare and cooked meals during our never-ending trips to the hospital.  Family drove through the night to meet her, also in shock, but there for us all.

The Wise and Respected Godmother says that when people are in crisis you must never be afraid to talk to them.  If your words are meant with kindness, even if you don't quite say the right thing, you can't make them feel any worse than they do already.  The only way is up and knowing that you care will help.

A shaky start for Natty in the Special Care Baby Unit

2)  Congratulate the family on the arrival of a beautiful new person in the world!

My husband popped the cork on the bottle of bubbly we had bought in advance of our baby's arrival.  We toasted our daughter who lay in an incubator in intensive care that night, even though that was the last thing we really felt like doing.

Send a card of congratulations (not condolences please!) and a small gift for the baby to have near her if she is in hospital, buy a pack of toiletries or wholesome snacks for parents spending many hours in hospital or purchase a pretty coolbox for mums transporting breast milk to and from hospital twice a day.

Ask to see the baby or a photograph, ask if she has a name yet, how much she weighs, how the birth went, in fact anything you would ordinarily ask any new parent.

Our neighbours bought us a gift of a beautiful rose to plant in the garden, called 'Congratulations'.  It has survived house moves and harsh Winters and still makes me pause for thought whenever it blooms.

3)  Be realistic

When people acknowledged the challenges ahead of us and our early feelings of desperation, it made us take their words so much more seriously.  Over-optimism can be very insincere after all.  Understand that the parents are possibly grieving the loss of the healthy baby they were expecting.

The midwife who said "None of us want this for our children, but she is beautiful, and you will cope." was one I came to trust the most.

Another who countered my "I don't want to love her because I am afraid she's going to die," with "That baby needs your love my dear, whether she lives or dies.  So get to that hospital and give it to her."  was so very wise and true.

"It will be hard but I will help when I can."  

"She is looking a little stronger/better than when I saw her last."  
"I can't imagine how you feel...."  all delivered with hugs from friends.

But be prepared for any advice you give to be ignored.  If I had a pound for every time someone gave me the number of the lady who runs the local Down's Syndrome Support Group I could have paid for a lifetime of private Speech and Language Therapy for Natty.  

In fact it took me 2 years to contact her (she is a dear friend now), but we still remain rather a private family (believe it or not!) and do not join in many organised group activities. Each family will work at their own pace.

And I didn't once ever contact any friends of friends whose phone numbers were passed my way simply because their children had the same number of chromosomes as mine, prefering instead to make friendships with those who would have been in my life regardless of having a child with Down's syndrome or not.

Our book for children I Love You Natty

4)  Avoid outdated language and clichés

Just say the baby 'has' Down's syndrome and avoid outdated terms which shall remain unmentioned here. 

She is a baby first and foremost.  She will have the features and traits of her family before those of any other child with Down's syndrome.  She will follow their path, learn their traditions and values, and be dressed the way they want her to.

She is in the here and now.  Don't ask endless questions about ante-natal testing or refer to the idea that perhaps she shouldn't have been born. (You might also want to avoid mentioning the mother's age or the state of her eggs!  One of the loveliest DS Mums I know was 18 when her little girl was born...)  

I actually don't mind people asking "Did you have testing?"  It's the "Didn't you have testing then?" that is hard to swallow...the subtext being that if we had, she wouldn't be here of course.

And as for being musical and loving... just come round and listen to Natty sing along to Little mix at the top of her lung's capacity these days, you might just change your mind!

For unbiased advice that covers all bases, you can't do better than read the free Start It Right leaflets published by the Down's Syndrome Association.

PS)   This is not number 5) because it is not advice

Perhaps it's just the way I am, but  reverse psychology worked pretty well on me.  I can clearly remember 2 pieces of shockingly negative input from 2 separate individuals.  So shocking and so negative that they made me sit up and think, ''Right, you'll see!"...

The first was from the kind of jovial midwife that wafts through your space shortly after the news has been given to you about your baby's diagnosis.  When asked by my doula what we should do about the breast milk (meaning - how to get it into the baby) she replied "Oh, don't worry about that, it'll soon dry up after the shock she's had today."

Natty's first taste of breastmilk whilst in Neo-natal Intensive Care

So breastfeed I did, the same way I fed her sister.
It took 3 months before the naso-gastric tubes came out and what felt like a 24/7 expressing regime, but we mastered it together, Natty and I.

The second was from an acquaintance who (perhaps speaking from personal experience) offered, "You don't have to keep her you know. You can just say goodbye, nice knowing you..."

I might have been waivering on whether I could cope or not, but this made me realise that I wanted to give it my best shot and that regardless of my shock, I didn't want to watch someone else become my baby's mother.

I promised my baby at that moment to do the very best I could for her at all times. Sometimes it isn't perfect, but it is always my best. 

The birth of any of your children should not be by far and away the most challenging day of your life.  

But for so many of us it is.  I wish with all my heart I could go back in time and re-live that day, knowing what I know now. I can't of course, all I can do now is share our story to make things better for others, to buy them precious bonding time with their newborn babies. 

Simply the right words, actions and attitudes has the power to set new families on the right path.  

How language shapes our thinking: Hayley speaking at TedxTruro. Photo @VerityWestcott
Vote here

Advice For Medical Staff Giving the Postnatal Diagnosis
The way in which the diagnosis of Down's syndrome is communicated is often done in a dissatisfactory manner.
The firm diagnosis of Down's syndrome on phenotypic grounds is usually possible immediately after delivery.  It is essential to inform the parents, at least of your suspicions, as soon as possible after delivery.
The Delivery Suite diagnosis of Down's syndrome should follow this plan:
  1. As soon as the baby is delivered congratulate the parents on the birth of their child.
  2. Advise them whether the baby is healthy or not and explain any immediate resuscitative procedures you are performing.
  3. As soon as third stage is complete and the baby is stabilised, ensure that you can have some time alone with both parents and the baby. Many parents will already have sensed an apprehensive atmosphere in these few minutes. A midwife who has been involved with the delivery may be an invaluable support.
  4. State your clinical diagnosis and, if necessary, your degree of certainty. An opening statement could be: "She looks very healthy but I have some news for you that you might not have been expecting. Your baby has Down's syndrome." You should be touching the baby as you say this and using her name, indicating your acceptance of the child. No new parent wants their doctor to treat their baby with repugnance.
  5. After dealing with any immediate denial statements from the parents, it is necessary to evaluate their understanding of the diagnosis ("What do you understand by the term Down's syndrome?"). It may become evident that they have little knowledge about the condition or they are weighed down with myths and misunderstandings. These should be corrected carefully.
  6. It is impractical to fully educate the parents of a baby with Down's syndrome immediately after delivery. Enough information should be given so as to answer their immediate questions and support them until later in the day when more detailed discussions can take place. Immediate information should include a synopsis of the aetiology of the syndrome, a defusing of either parent "blaming" the other, and a description of investigations and procedures which are necessary to fully evaluate the child's health.
  7. A complete discussion of the diagnosis should take place once the parents are at least partially recovered from the immediate stress of delivery, usually within twenty four hours. By this time there will be a barrage of questions which will need to be answered accurately and adequately. Every effort should be made to have both parents at this meeting. Again the child should be present as the focus of the discussions and should be held by the parents. It is still too early to overload the parents with every minute fact so there is a need to be sensitive to their particular rate of uptake of these new and complex concepts.
  8. Do not try to be to predictive. It is nonsense to try to foresee the future for any child with accuracy. Perpetuating myths such as "at least he'll always be loving and enjoy music" is inexcusable. A "broad brush" picture should be painted which recognises every child's capacity to develop individually.
  9. Family and friends can be a source of great support but they may also need information and education. The Down's Syndrome Association offers ongoing support to parents of babies with Down's syndrome, including support from parent who have had a child with Down's syndrome.
  10. It may be helpful for relations to bring in photos of the parents as neonates. This allows the parents to compare the baby's facial characteristics with their own and see that it is their baby, not a "Down's baby".
  11. Most doctors understand the parents' need to have time alone but also to feel confident in approaching the doctor at any time for more information. An open-door policy is essential. When a case of Down's syndrome is delivered, a child is born. This simple fact is so often overlooked in the storm of emotional upheaval that the new mother and father are rarely congratulated on becoming parents. One mother was even sent an "In Sympathy" card the day after she delivered a healthy baby who had Down's syndrome . Less than thirty years ago some Australian doctors used to advise their patients to place their Down's syndrome babies in institutions and tell their relations they had been stillborn. Although this sort of approach no longer exists, very occasionally the parents of a newborn with Down's syndrome will decide that, for whatever reason, they are unable to accept the child. In this situation the options include foster care or adoption and it is obviously not a decision to be taken lightly. The doctor's role is again that of an informed counsellor, not a judge.

    The process of coming to terms with having given birth to a child with Down's syndrome has been likened to the well-known grief reaction which occurs after the death of a child. Stages such as denial, anger, acceptance, for example, are recognisable and parents are said to be grieving for the loss of their expected "perfect" child. While this view has some small merit, it fails to address the long term and varying nature of the readjustment process in the case of the family of a child with Down's syndrome. After all, the child has not died.