A World Without Down’s Syndrome

Daddy holding his tiny baby daughter

When Audrey was born, my brother Googled to find out if any celebrities had a child with Down’s Syndrome… and he found Sally Phillips. It was very thoughtful of him to try and make it “acceptable” for me – appealing to my (shameful) interest in celebrities. At the time I read an interview with her talking about her son Olly and it was very positive. But I couldn’t find more than that one interview and I guess I wondered why she didn’t do more. But now I see that it’s a really big deal to “put yourself out there”. 
I have wanted to write about Sally’s documentary (“A World Without Down’s Syndrome”) for weeks, but I’ve found it incredibly hard. The lead up was a draining and consuming time. I felt anxious and stressed about being involved, about making a difference. So much positive and negative feedback, so much going on… And yet I know that this was just for those of us with an eye on the subject. For many, the film may have passed by unnoticed. 

But not me. I was watching it approach slowly, following a behind-the-scenes Facebook group that was prepping for press and publicity around it. I had planned to catch it at my convenience on iplayer, but after watching the beginning, I had to stay up and watch it. I was crying within seconds of it starting!

I was so desperate to write about it, yet my thoughts sort of ran dry. So many reviews. So many reactions. It’s been tiring processing it all. It matters to me – that people would watch it and love it, watch it and learn. But I appreciate why many thought Sally wasn’t the right person to make it – she comes from a biased perspective. However it needed to be made and it needed that positive skew. That was the point – communicating the positive side to having a child with Down’s Syndrome – balance against the negative information and medical condition list you are given at diagnosis. And also questioning a society where we actively look to rid the world of people who are different. Someone has decided that this is a wholly negative condition and therefore it’s worth screening for accurately.

If you watched the film and took it the wrong way (maybe thinking it was anti- pro chioice, judgy or preachy? Maybe thinking it sugar-coated life with a child with special needs?) please be assured that wasn’t the aim. It was a truth, it was Sally’s truth.

And just as Sally shared her truth, I share mine. Audrey hasn’t needed lots of medication or operations. She was on oxygen for the first 6 months of her life because she needed a little help breathing in deep sleep. She needs glasses because she is long sighted and (like me at her age), she has a lazy eye (aka squint). She has low muscle tone which is indeed a bugger and is making it harder for her to walk, but it also means she can practice yoga like a pro (like her Great-Grandmother, Emily, aka the Filleted Lady!). She lacks strength in some areas, but is amazing in others. She is basically a human being, perfect and flawed…yep, she is one of us.

Trying to create a world of perfect humans scares me. It also scares me that the very same brother who found Sally Phillips Googling famous people linked to DS, thinks that it’s a good thing to rid the world of the condition. Yes he said that. How can he of all people not get it? I guess it’s a common view that the world would be a better place without disability. Again, I feel I have too much to say on that subject so I’m struggling to blog about it. But clearly, a world of varied strengths and weaknesses, of light and dark; that’s a better world than one of “perfection”. I can’t even say for sure what perfection is. I had a lazy eye as a child, my sister was diagnosed with MS at the age of 40 – are we so flawed we shouldn’t have been granted life? Eek, what a debate this could be…

My hope is that people simply think about people with Down’s Syndrome as that – people. Understand that they contribute to the world we live in and bring happiness to their families. I’m not a religious pro-lifer, but I feel very blessed to have Audrey. Our lives are richer and happier for having her in it and she’s about as close to perfection as I could ever imagine.

#worldWITHdowns

 

My world 


OCTOBER = Down’s Syndrome Awareness Month.

This seems to come around so quickly and  I worry I’ve got nothing new to say. Or that I’ve said it all throughout the year in my general posts. 

Just know that we (the DS community) raise awareness because we care. We care about the people in our lives with Down’s Syndrome and we fight for them. We fight for others to become “aware” – to try and make them understand that DS isn’t necessarily what you think it is. We look for balance – for dark and light, Down’s Syndrome isn’t a depressing life sentence, but it’s not unicorns and rainbows either. That’s just life full stop.

I sat and thought about what I wanted to say this year and realised I want to talk about whether we can ever really get someone outside the circle to fully understand. Can we ever really make Down’s Syndrome appealing? Can we ever make it ok and not negative?

Close friends of ours got pregnant. They had the screening for Down’s Syndrome. Mum-to-be says to me “So we had the test and I told the lady that we weren’t really that bothered about the result because of what happened to you..” – at this point I start to feel all warm and fuzzy inside; that they would feel ok with a high chance of DS because they know and love Audrey. Ahhhh. But then she continued; “Because, well, you got ‘low risk’ and it didn’t mean anything – Audrey had Down’s Syndrome”. Oh. She was making a point about the test not being worth doing because it’s not accurate, not that it’s not worth doing because they’d be ok with a child with Down’s Syndrome. Of course this was an opportunity for me to push back and question her, but I didn’t. I just smiled and nodded like a fool. I don’t really like confrontation, but I suspect she would have backtracked and it would have been awkward.

My point is, even people close to us (on the edge of the circle), don’t necessarily feel ok about Down’s Syndrome, so how on earth can we spread a balanced message of hope and positivity to pregnant women who have no connection to DS?

Well, maybe we can’t… But maybe we can, so we’ll keep trying.

We can fight for better language (a baby with Down’s Syndrome, not a Down’s baby. Low or high “chance” not “risk” of Down’s Syndrome), we can fight for better knowledge (facts about people with DS attending mainstream schools, leading independent lives) and share our positive stories to outweigh the dated negative ones.

And so I’m going to point you in the direction of this (highly anticipated in our community), documentary; 

http://bbc.in/2dkMib6 

And this great article;

http://www.telegraph.co.uk/women/family/sally-phillips-my-son-has-downs-syndrome—but-i-wouldnt-want-to/

And I’m going to continue writing my blog and sharing our lives in the hope we reach the right audience. It certainly can’t do any harm to keep on keeping on… We live in a rich and varied world. Life would be so boring if everyone was “perfect” and “normal”.

I can only present life as we know it and our experiences, but I know someone who had an adult son with Down’s Syndrome that was in nappies and only had a few words – the kind of “worst case scenario” if you will. But they loved that son/brother/grandchild and never regretted having him. They would have had every right to be bitter and angry about the life he had/they had, but they weren’t. Love doesn’t necessarily conquer all, but it has a bloody good go at doing so.

One thing I’m 100% sure about is; my world is better for having Audrey in it. 

#worldwithoutdowns

World Down Syndrome Day 2016

  
Here we are again, our third World Down Syndrome Day. I feel like I’m always banging the DS awareness drum, I really hope it’s not a bore to people.

This time around we’ve got tiny Rex with us, depriving me of sleep and making me a little bit insane (well the hormones post-pregnancy are). So it’s a crazy time. But one thing Rex has done by crashing into our world and turning things upside down; is shine a light on just how wonderful his sister is. I’m not saying him being difficult makes us realise how good Audrey is… Well… I guess I am a bit… But I know he doesn’t mean to, he’s just being a demanding newborn, wanting to feed and to sleep in our arms, crying too much and pooping and weeing at the wrong time… But in amongst the stress and tiring times, we have a beautiful little girl who is unaffected by the chaos – but has the sensitivity to ask if we (mostly Rex and I, the criers!) are ok. She’s offering cuddles and (heartbreakingly), saying and signing “Mummy sad”. She is playing happily by herself, casually saying “Hi Rex” when we bring him into the room, offering him cuddles when he cries. Her emotional intelligence is incredible.

And so, on this day, I celebrate Audrey for being our daughter, someone we love now more than we ever thought possible, who happens to have Down’s Syndrome. And if you let that define her or you make a judgement about what she might be like based on this syndrome, you will be way off the mark. Because I know there are many who are having scans and taking the screening test to find out their chances of a baby with Down’s Syndrome… And some are doing this to “prepare” (they have no intention of aborting), but want to know what’s coming. But many are geared up for aborting if the chances are high – they are thinking they couldn’t handle a disabled child. They may even be worrying about all the difficulties  they’ll face. They will probably be wondering what kind of life can someone have with a learning disability? Some may even say that livng with a disability; “well that’s no life at all”. Of course I can’t guarantee things won’t be hard, that their won’t be health issues and struggles, but I can tell you about our daughter with Down’s Syndrome. I can tell you that our experience has been so amazing and that her life – wow, she loves it to the max. She’s having a great time and we love Audrey more and more each day. Now that Rex is here, we look at her as a big sister and we are so proud and excited by the prospect of them being friends forever. We are also thinking about how much she will teach him. 

Happy World Down Syndrome Day everyone! 

  

NIPT: Don’t Screen Us Out

NIPT (non-invasive prenatal testing) is being hailed as an amazing breakthrough now available on the NHS in the UK, that will save so many babies. The theory is, women will be offered this testing and there will be no need for an amniocentesis – which carries a risk of miscarriage. No need for further testing because this non-invasive test will give you an accurate answer on whether the child you are carrying has Down’s Syndrome (or Edward’s Syndrome or Patau syndrome) and then you can be prepared for their future (aka you can abort). Ok, that’s harsh, but when you consider 9 out of 10 woman abort when finding out their child has DS through amniocentesis (generally quite far down the pregnancy time line), how many will choose to abort when having this accurate test at 12 weeks? 

This has rocked the DS community because we are basically heading towards the elimination of Down’s Syndrome altogether. Which feels like a pretty crazy concept when you actually have a child with DS. We’re part of a community that will cease to exist, but not only that, it will cease to exist because society decided that babies with Down’s Syndrome have less value than ‘typical’ babies. That their lives are so tough(?) troubled(?) unhealthy(?), that they are better off not living. How do we explain this to Audrey?

I do of course have to acknowledge that 80% of babies with Patau syndrome will die before they turn one. I do understand that some of the conditions identified early will be extreme conditions that are not the same or similar to DS, so a breakthrough like this may save heartbreak further down the line. And I don’t want to wade into this debate without acknowledging that we are screening for abnormalities and health problems. It’s just that I spend my days immersed in a world where people with Down’s Syndrome are making a difference, they are enriching lives and fulfilling a role within society. They are not something that needs to be screened out of existence.

Let’s imagine you are given power and options when you are pregnant and you can fill out a questionnaire choosing various traits and facts about your fetus – shaping them and their future. What boxes would you tick?

Would you like this child to be born disabled?

Would you like this child to wake up at 5am a lot? 

Would you like this child to be a fan of One Direction?

Would you like them to be slutty?

Would you like them to become a member of UKIP?

Let’s face it, we have little control over what that fetus will become. We can do our best to nurture a good human being. Someone fun, kind, clever… Someone who finds a perfect career and true love and happiness. Someone who looks after themselves and their family. But nothing is guaranteed. The only thing I can guarantee about having a baby, in my limited experience, is that you will love them unconditionally. They will be the best thing you ever did. The most beautiful thing you ever saw. The most valuable life to you. 

It scares me that a screening test will tell you your fetus has Down’s Syndrome and that’s what will define the baby. You’ll imagine a disabled child. You won’t know anything else about them. The screening won’t say their face will light up at the sight of yours. That they will dance like crazy to even a hint of music. They will clap and cheer and cuddle their teddy and say “They did it!” when someone wins on a gameshow. They will stroke your face and say “lovely”. When they hear you say “kitchen” they’ll do the Makaton sign for “chicken”. They will constantly crack you up, surprise you and frustrate you. Your world will revolve around their happiness and wellbeing and you’ll love it. 

The world needs diversity. Ups and downs. If we screen out conditions that cause complications and make people different, where will it end? How bland will life become if we can eventually make everyone “perfect”? It’s a sad future without more people like Audrey, that’s for sure. #dontscreenusout
 
   

  

Stereotypes; there must be more to life?

I was recently lifted by the sight of something so simple, natural and not out of the ordinary. Yet it was just what I wanted to see and it challenged that stereotype of a person with Down’s Syndrome that I found so desperately upsetting when Audrey was born.

I saw a young woman with Down’s Syndrome shopping with her dad in a supermarket. She had on colourful clothes and was carrying a blue Michael Kors handbag. I was watching them from afar (Audrey was asleep in the buggy) and as we went through the checkout and I noticed that Vogue was on offer (only ¬£2!), I glanced down the rows of checkouts to see if she was still around… Just in time to see her leaving with a Vogue tucked under one arm.

This ridiculous thing made me feel so happy. I tried to think why… And I decided it’s about inclusion, representation and knowledge. Maybe it wouldn’t seem so amazing to see a fashionista with Down Syndrome if one popped up now and again on TV or in a magazine.

This is what I love about social media when it comes to the DS community. I can explore the diverse world of; people who are like me and people who are different. These two things make me happy in so many ways.

Connecting with people who are like you;

Well it makes you feel… connected. You can have banter about those things that you share in common, like shiny new Nike Airs or a good lemon drizzle cake or getting a fringe cut in.

Seeing people who are different;

What does the mother of a child with special needs look like? Is she mumsy? Old? Plain? Sensible? And what hobbies does she have? Knitting? Volunteering? Does she like music? Probably Cliff Richard? Or Daniel O’Donnell?  Well those preconceptions can be shattered.

Call me crazy, but pre-Audrey I imagined families with children with special needs. I thought: geeky. Respectable. Good. Boring. Worthy. A grey, depressing world. So I love to see families with children with special needs who do not fulfill that grey expectation… tattooed, blue haired, fat, thin, trendy, twee, perfect, messy, tacky, stylish… it’s just fun seeing that there are so many different families out there tied together by having that someone who has an extra chromosome. And we are all “representing” (this needs an American accent, doesn’t quite work in a British voice!). We are showing the spectrum rather than letting people imagine the grey.

Something that helps bind us to these families are the facial characteristics that are common in people with Down’s Syndrome. Imagine seeing another family whose child looks remarkably like yours… Freaky? Yes it can be a bit! But of course we see the beauty in those faces and we feel connected. It’s pretty amazing actually. An extended family.

A couple of months ago, I had my haircut at a new hairdresser. I have had the same home hairdresser for years and she was away and I needed sorting asap. So I had to go through the motions of small talk with a stranger. He was young (28), bearded and tattooed, I worried we’d have nothing to talk about, but he had a 5 week old baby girl and 2 stepsons so that made it easy; we can talk about kids, hurrah! I mentioned at that point we hadn’t really told everyone about our pregnancy as we were waiting for the 20 week scan, feeling a bit nervous after a miscarriage. He understood, he had some friends… They had the “Down’s test…” and I’m thinking “Oh no, don’t go there…” It was an out of body experience as I felt a bit sick and waited for him to finish this sad story of his friends and their scan… The baby had an extremely rare condition, it wouldn’t have survived, so they had a termination. A sad story and at this point I felt the need to say “I should probably mention that my daughter has Down’s Syndrome..”. He was a little embarrassed and rambled a bit about this specific condition not being like Down’s Syndrome and it was a bit uncomfortable for both of us. I felt I had a real opportunity to educate but I didn’t want to sound like I was preaching and I did find the situation difficult. He asked me “Is it tiring?” and I have to admit I wasn’t entirely sure what he was referring to at first! “Having a child with Down’s Syndrome?”, “Oh no! In fact, she’s probably not as tiring as her peers as she can’t run riot and she’s just very gentle and content most of the time”. It was weird discussing Audrey in this way; as a child with DS, rather than just a child – and someone wondering “Your kid has Down’s Syndrome, wow, what’s that like??”.

We bang the drum for inclusion and I guess some people wonder why. My brother actually thought it was funny we were so obsessed with seeing people with Down’s Syndrome on TV – I think to a certain extent he was being cynical in that advertisers and channels can use disability inclusion to ‘score brownie points’. And I get that. Pre-Audrey I may have agreed. “Oh they’ve shoe-horned a character in a wheelchair into this story line, yawn”. But now I view those things oh so differently. I am excited by the representation of minorities in the media now. No, I don’t want to see a Down’s Syndrome character forcefully added to every TV advert, but to see a face from our community every now and again is a nice feeling. Especially when it’s just representing life, not trying to represent disability.

And that’s what I’m trying to do with blogging about Audrey, just represent our life. And maybe (hopefully) we’ll reach someone who needed to see our life in order to change their perception of Down Syndrome for the better.

   
   

Featuring Down’s Syndrome doesn’t have to be a Catastrophe (har de har har)

This week I watched the Channel 4 comedy, Catastrophe. I’m behind on most things that air after 9pm, so thank the modern world for catch up.

I started series one on the laptop with headphones whilst Ted watched football. He’s always so apologetic about sport on TV, but sometimes it just gives me a chance to binge watch something he might not be that into. In this case, he’d definitely like Catastrophe, but that’s just tough. I enjoyed Sharon Horgan’s ‘Pulling’, so I had high hopes for this programme.

Anyway, this week I got to series 1, episode 4. *Spoiler alert for the rest of this post*! The series is about a couple who get pregnant after a fling and decide to make it work, Sharon Horgan’s character is over 40, so this is classed as a ‘geriatric pregnancy’ (!) and the couple are told their screening results have come back as a high risk for Down’s Syndrome – 1 in 50. As soon as screening was mentioned, my heckles went up and I felt that wave of dread come over me. This is a well written, funny, absurd but realistic comedy, at no point did I anticipate an uncomfortable encounter with them tackling Down’s Syndrome screening as a storyline. So I was scared of what was coming and I reached for Ted’s hand…

Of course the news that they are high risk is considered bad news. Of course it is. I don’t want storylines that sugar-coat reality for the sake of political correctness or being inoffensive. If we had received a high risk result, it would have been bad news to us. In general, people do not wish for their children to be disabled, I can’t fault them for this realistic portrayal of the news.

Anyway, they soon discover the results were even more high risk – 1 in 25 – and they have to make a decision about going ahead with amniocentesis. They have an open discussion about their exposure to DS. Rob has an uncle with Down’s Syndrome (and he showed him his first picture of a boob, so he liked him), Sharon knew a couple with a child with DS, but remembers the woman alone in her 70s, still caring for her adult son. She describes seeing them in the supermarket, the mother looking tired and old. Rob has a fab response  (along the lines of) “well for all you know they went home, smoked some weed, watched Judge Judy and had a great time”. It’s a balanced and realistic discussion about experiences of Down’s Syndrome.

They go ahead with the amniocentesis, but it’s well described by Sharon as something she’s uncomfortable about doing.

And then they get a call with the results… The baby (foetus at this stage) doesn’t have Down’s Syndrome. They are relieved. Again, I cannot fault this, it is good news that would come as a relief. A little part of me is disappointed at this juncture, we’ve followed the story and ultimately, they’ve dodged a bullet, hurray! 

But then they come good. Sharon is waiting in a queue and a beautiful little girl with Down’s Syndrome starts waving at her. At the sight of this child (as is so often the case when seeing a face with DS in the media), my heart swells. I think the mother apologises and Sharon says “She’s beautiful”. 

Yes I had a good cry. I felt they had acknowledged that had their baby tested positive for Down’s, it would have been ok.   I’m sure the feelings were mixed, maybe there’s relief in there, I don’t know, but I certainly felt like this wasn’t a moment for Sharon to think “Phew, I’m glad I don’t have one of those!”, I felt like they were showing that what could have been would have been beautiful, would have been ok.

Anyway, the show is really funny. It’s dirty c-word type funny, so not for everyone (my mum would be appalled), but I’m glad that a show like this could tackle a Down’s Syndrome storyline and do it well.

I tweeted Rob Delaney (just moments after my tearful relief at seeing that beautiful face of a girl with DS at the end) to say I loved it and he replied. I was pretty excited to say the least, he has over a million followers!! And he is a good-looking hairy man who writes an excellent show. Woo hoo!

Audrey has been poorly for a week and has quite a spotty face, so she’s not up for fancy pics, that said, she’ll still blow kisses even when under the weather!

And check out the colour scheme matching card from nursery!