Love From Uncle Carl: A niece who has Down syndrome

Uncle Carl holds Natalia at her naming party.

*This post was first published in 2013. Natty is now 14 and the pair are still close.

Well where do I start with this blog post that my sister asked me to write?

It seems hardly possible that the next few paragraphs will summarise 5 years.  The time has passed so quickly but I can still recall some of the early events as if they were yesterday….

The lead up to Natalia’s birth was, I imagine, as typical as any family.  We were all super excited with the prospect of another member joining us and I was excited about becoming an uncle again.  Many trips were made to my sister's house to help out looking after Mia, and we enjoyed planning for the future over many meal times.  

I will start my story from when I first heard the unexpected news...

Bob phoned me on my mobile and I was sitting at my desk at work. It was around 3pm and I remember him saying that Hayley had had the baby, she was a girl.  And in his very typical softly spoken voice, which I can still hear to this day, he said she had Down's Syndrome.  My first reaction was disbelief and I questioned his comment, almost thinking he was joking.  When I look back, I realise how silly this was, but now feel that my reaction was because this sort of thing happens to other people…. (4 years previously a work colleague had a son with Down's and I remember vividly thinking I hope that doesn’t happen to me.  I moved from the company and so did not follow the progress of his son.   My perception has obviously changed since then.)

After putting the phone down from Robert I remember feeling in total shock. I stayed at work for another hour at the most and drove home.  On the way home one of my closest friends called me, as usual for a chat during our commute.   He asked how I was and I attempted to tell him that my sister’s new daughter had been born with Down's Syndrome, but I couldn’t.  I burst into tears and just couldn’t talk.  The feeling was of disappointment I guess, and immense worry for what the future would bring.  This child was not 'healthy', or 'normal', which is what everyone says when a baby is born.  We have a disability in the family.  These were the thoughts running through my mind.  When I think back this was purely because I knew nothing about this condition and so I was speculating…  My friend tried to chat but I ended up pulling over and putting the phone down.  I sat in a layby until I could control my tears and then drove home.

Family Story by Elaine Walsh: Bonding with my Daughter

Please welcome Elaine Walsh and read her beautiful story below, as she tells us about the early days with her daughter Síofra, who has inspired her to help other new parents.

Síofra and her Mum Elaine

When my daughter was born I wondered why I wasn’t feeling that strong bond as we lay beside each other in the hospital.

We received a post-natal diagnosis of Down syndrome when Síofra was born. I wondered if that was why I wasn't connecting with her. I felt really guilty about it.
Myself and my husband had desperately wanted our own child. We went through IVF unsuccessfully. We were thrilled to be pregnant. So I really wondered why I wasn't besotted. I was worried that I wouldn’t be able to see past her diagnosis. I judged myself really harshly for even thinking like that.⠀⠀⠀⠀⠀⠀⠀⠀⠀

I didn’t realise that because I had a cesarean birth I hadn't felt the explosion of Oxytocin, the naturally occurring love hormone, that mothers experience when they give birth vaginally. It creates that bonding feeling.

Three years later, I have come to understand that it was more probable that the lack of Oxytocin in my body and the fact that she had to be lifted from my body was the reason that I struggled to bond with her. And that it had nothing to do with her extra chromosome.⠀⠀⠀⠀⠀⠀⠀⠀⠀

Down Syndrome Diary Spreads Love Across the Globe

Seven years ago, new Detroit Mum Jamie Freeman wrote a personal message into a pristine leather-bound diary. Simply wanting to correspond with other parents with a child with Down's syndrome, she had no idea who would read her words about her beautiful son Benny, or the hands that would write within the book as it travelled through 26 families and across four countries and two continents.

She certainly didn't know that she would later publish The Down Syndrome Diary in a beautiful coffee table format for others to read, pulling its stories together closely, just as she would draw the contributors in, becoming an online family.

"Thank you, whoever you are, 

wherever you are, for your words..."

Jamie wrote her story into a beautiful book she would send out into the world. You can read her blog Ben Through it All here. 

Super Gifts for the Senses

You'd be surprised how often people ask for my advice about what kind of present they should buy for a child with special needs. 

Birthdays and Christmas only come around but once a year and other milestone events happen once in a lifetime, so it's important to make your gift one that will light up a child with additional needs' eyes and be used frequently, whilst aiding their development in a fun and gentle way. 

Find a present that will delight, educate and develop the senses

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 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. 

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.

Summer Holiday Solutions for SEN Families

For most of us that blank sheet of school Summer break time leads to a mixture of relief that our children are ours exclusively for the next few weeks, excitement at all the memory-making to be done, and not a little anxiety as to how we are going to fill each day, survive the meltdowns or find enough energy, patience and/or affordable childcare.  

I certainly don't have all the answers, but here are a few ideas you might like to try.

Summer holiday solutions for SEN families

Let's Celebrate World Down Syndrome Day 2017

Let's Celebrate World Down Syndrome Day 2017!

The 21st day of the 3rd month sees World Down Syndrome Day - the date 21/3 representing 3 copies of chromosome 21 which leads to the common condition.

Through Our Eyes: A Tribute to Daisy Rose Nimmo

Dedicated to Daisy Rose Nimmo.

Daisy Rose Nimmo 2004 - 2017 @Steph Nimmo
Was This in The Plan???

The SEN world were shocked and saddened to hear of the passing of Daisy last week. This beautiful and vibrant young daughter of Stephanie Nimmo has changed many lives more than she could ever know. 

Steph has been a constant and vital campaigner for change within the learning disability world and healthcare over the years. We all felt we knew Daisy and her family through Steph's powerful blog Was This in the Plan?

Steph wrote "Today our beautiful, feisty, determined girl, Daisy Rose, took her last breath and is out of pain and dancing in the stars with her beloved daddy."

My Brother Geoff: Born with Down's Syndrome in 1961

Victoria Lewin author of books for young carers such as her daughter, and project lead of charity Caitlin's Wish contacted me recently about some training work she is doing. 

As we got chatting the rather heart-breaking story of Victoria's uncle Geoff, who has Down's syndrome emerged. His story is somewhat typical and although it has a happy ending, the realisation that attitudes, support and early intervention have changed greatly since the 60s is emotional to read.

My Brother Geoff 

I was 11 when my little brother was born in 1961.  My mum was 41 and he was her third child (both now known risk factors but we didn’t know that then).  His father was diagnosed with leukaemia shortly before he was born and died when he was a few months old.  So it was just me, Mum and Geoff (my older brother had left home). 

The Closest of Friends: Brandon's Poem by Sister Sadé

I was contacted by a very proud sister this week who wanted to share a poem she had written for a very special man in her life.

That man wonderful is Brandon and he is Sadé's brother. 

All in the Same Boat - Not Heading to Holland

This week saw the launch of my new regular column over on the Firefly Community, an amazing hub for parents and professionals who work with children with special needs and disabilities. 

Do stop by and join in the conversation, or check out their amazing mobility products. 

It's a community that is very varied, and it got me thinking about what it is to be a SEND parent, if indeed there is such a thing. 

All in the same boat - not heading to Holland 

We are all so different, as are our children, but yet we share common threads. And then I got to thinking about Welcome to Holland and what it means to me.

An Unlikely Duo: Sally Phillips and I Take to the Stage

Phillips and Goleniowska is never going to trip off the tongue, and indeed our pairing was less about the giggles and more about the opening of eyes and the changing of hearts and minds, but last week we took to the stage together. 

Sally Phillips and I share our stories with healthcare professionals

In fact the tears in the audience's eyes stemmed from raw emotion rather than belly laughs, although with Sally Phillips being an accomplished comedy actor her honest story and true emotion was balanced perfectly with quick-witted moments of hilarity at the event organised by Daniel Marsden and the Kent, Surrey and Sussex Learning Disability Community of Practice.

Moments of hilarity with actor Sally Phillips at LDCoP16

"Parenting a child with Down's syndrome is more like a sitcom than a tragedy." Sally Phillips

Time Flies - A Life less Ordinary by Sarah Stevens

Three years ago I hosted a series of guest posts for Down Syndrome Awareness Month. One of them was by Sarah Stevens, who has kindly given us an update. 

You can read Sarah's original post, A Life Less Ordinary here.

A LIFE LESS ORDINARY – WHAT HAPPENED NEXT…?

Time. 

It flies by, in the blink of an eye. 

In this increasingly bonkers world that we live in, days merge into weeks, weeks into months and before you know it, it’s Christmas again. How is it possible that the subject of my original blog turns eight next month? EIGHT!!!

Thanks to the Many Types of Mummy on Mother's Day

Mother's Day is a bit like Christmas Day in that each family has their own special way of celebrating it.

There are your particular traditions and histories, memories and emotions.

Many types of Mum on Mothers Day

I have been a Mummy for just over 12 years now and, along with our girls' birthdays it is always a marker in time at which to reflect on our journey of parenthood. The happiness, the love, the worry, the hamster wheel of exhaustion, the lessons learned, the giggles and tickles, the battles of will, the grey hairs gained, the way Motherhood permanently changes you, immeasurably, for the better...

Growing up, Mother's Day was always a special service in church, followed by a large roast lunch and presents and cards for Mum. There were the simple gifts of daffodils and hyathinths that had usually been planted in pots weeks earlier during Sunday School. And just writing this brings back the smell of the musty little upstairs room we prepared those floral tributes to our Mummies in, all those years ago.

I suppose we've taken on similar traditions in our house too, although we are not regular church-goers and would typically instead go for a walk on the beach or in the woods, then fill our tummies with a roast dinner in our local eatery before watching a family film together on the sofa or playing a board game. 

My husband always helps the girls choose little presents and factors in some Mummy alone time, usually in the form of a peaceful lie-in or an afternoon nap (when did sleep become the only gift I crave?).

My mum lives 6 hours away, so we won't be able to share the day with her. We've sent our gift and card and will chat to her of course, then...

Suddenly I realised in a heartbeat that, again like Christmas, Mother's Day is not always a perfect, happy chocolate box occasion for everyone. There is no 'one size fits all' approach to it.

I am thinking of those who are single Mums of tiny ones, with no-one to organise the treat or time out they so richly deserve. The widows too, whose sorely missed husbands helped create their beautiful families and make them Mothers, for whom Mother's Day must also be an emotional marker in time.

I extend the hand of support to Mums for whom parenting brings unsurmountable challenges, where each day is a struggle to keep afloat. New mums battling depression or exhaustion, for whom the shock of a shift in lifestyle is unbearable.

I am thinking of those whose relationships with their mothers have broken down for whatever reason. Tomorrow will be a time of 'what ifs' and 'whys', if not anger and resentment, for not all mothers are warm and caring, but can be the cause of pain and suffering. 

I am thinking of the women who are not able to conceive, desperate to be Mummies but on a different path. And dear friends who have lost babies or children at whatever age. They are Mothers for sure, but with aching arms and hearts that struggle to beat. Others watch their little ones as they stay in hospital on this day, motherhood for them is worry, anxiety and hope.

'Being a Mum is a privilege 

and not a right after all.'

Then there are the stand-in Mothers, the foster Mummies, the Grandparents who bring up their grandchildren, the carers who might take on the lion's share of a child's support. We thank you too.

So, let's all count the blessings we have, and appreciate and celebrate Mummies in all their forms, even the single Dads who take on the role of Mother and Father, for we do not all conform to a Clinton's Card template. To each and every one of you, today is your day.

I phoned my best friend in the world just now, she has just adopted a little boy, to tell her how very proud I am of her on her first Mother's day. For the love that being a mummy brings does not always grow within your womb, but instead in your heart. Her journey of motherhood has been long and emotional and difficult, but finally a beautiful little boy has found his forever family.

So if you are planning a perfect Mothering Sunday with breakfast in bed and lunch cooked for you, some relaxing time out and all your children and a loving partner around you, you might just be in the minority. 

But we can all thank our children for making us the Mummies we are. 

You might also like to read Thank You Body for Making Me a Mum