World Down’s Syndrome Day 2019

It’s been a year since my list published on Mother of All Lists and reached a new audience with “our story” for World Down’s Syndrome Day. We’ve also been featured in magazines Best and Take A Break, on blogs like Mental Mutha and Gas & Air. Basically that’s an aim for me – not only to reach someone who needs us (a new mother to a child with Down’s syndrome or someone with a prenatal diagnosis), but also to find those who have no knowledge or connection to Down’s syndrome. To open their eyes and make them think. For them to see that Audrey is a human being with a right to live her life to the fullest.

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You see, on World Down’s Syndrome Day I often feel overwhelmed by the content. Videos, articles, stories, clips, blogs – all devoted to raising awareness of Down’s syndrome. The community is trying to make people aware that this is not a condition we need to eradicate, but it is something we need to learn more about and one we can celebrate not mourn.

I know that we are incredibly lucky with Audrey and her abilities. I also know that had we sat her down in a corner and ignored her (true description from a mother of how her baby with Down’s syndrome was treated at a nursery in the 1960s), she would not be doing so well. She thrives with love, care and attention and with a place in the world among her typical peers and her family.

It pains me to think that someone might receive a prenatal diagnosis of Down’s syndrome, be at a crossroads as to what to do and decide to terminate based on dated information, lack of support or because they aren’t given any other option. Medical professionals and organisations that are there to assist with a prenatal diagnosis can be surprisingly callous or biased when offering up ‘options’, imagine receiving the news that your unborn child has Down’s syndrome and immediately being asked “When would you like to book in your termination?”. I’ve heard stories of women being continually asked “Are you sure you want to continue with this pregnancy?” after they have made their position very clear.

Just to explain for anyone who doesn’t know – babies prenatally diagnosed with Down’s syndrome can be terminated up to TERM. Because the UK Abortion Act 1967, states that there “is no time limit on the term of the pregnancies” when there “is a substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped.” “Seriously handicapped” is then not further defined, so this loose term can allow mothers to terminate based on a cleft palate or a missing arm – if you can argue a child will “suffer” due to a disability, you can abort on your due date if you choose to.

I write this from a perspective of someone who believes in a woman’s right to choose – I believe in a woman’s right to have control over her own body and her pregnancy. But also as someone who thinks that it is madness to control the lives that enter this world based on how “perfect” or “imperfect” they might be. Especially when we don’t know how to measure that. What on earth is perfection anyway?

Well I had no idea what true perfection meant until Audrey entered my life.

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Happy World Down’s Syndrome Day 2019!

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(Belated) World Down’s Syndrome Day 2018

I always think this day comes around so quickly and that here I am again (eye roll) talking about World Down’s Syndrome Day… but then I realise that every day is #WDSD for me. So for those of you not regularly “exposed”, let’s learn a few things. Firstly, it’s 21st March and I didn’t finish this post in time (forgive me).

This year I threw myself in a little bit more than usual- we were in a printed magazine!

A piece came out in Take a Break:

This came about from The Specials “If I could go back…” video we took part in, (writing a letter to myself to talk about what I wish I had known when Audrey was born).

I also submitted a list to Mother of All Lists. An honest “Instamum” I am a fan of. I actually found it quite hard to write as I found myself getting quite ‘ranty’ (aka passionate?) when talking about DS. However once it was out there I had such a fantastic response, I was really pleased to have done it. It’s scary exposing your personal story (especially one that touches on Down’s syndrome screening and abortion), but it was a great way to reach an audience of mums who might otherwise have no knowledge of where society is with screening for DS or that humans like Audrey exist; being fabulous.

We had a party the weekend ahead of WDSD with Brighton and Hove families. Soft play, a disco, party food, music man, a raffle… great fun but exhausting. At the party a child was using Audrey as a step-up (climbing on her!!) and Rex threw himself in the way saying “That’s Audrey!”. I mean, he would happily climb on her himself, but he will also defend and protect her when needed! So lovely.

Audrey’s next EHCP meeting was looming, school in September seems close and scary. She’s seen an episode of Topsy and Tim and seems to think she’ll get a bike and a helmet to go to school with! She cracks me up. Once we had the meeting however, I felt so much better about it all. The SENCO was lovely and it felt… doable. I could imagine her at a mainstream school and not start to feel sick!

We are doing our monthly table tennis sessions thanks to our local T21 group (Trisomy 21 is the medical name for Down’s Syndrome) and loving it. Naturally the kids don’t really play table tennis, but they have a good runaround in a community space and it’s an inspiring place to be (given that they have 3 coaches with DS there – the only 3 qualified sports coaches in the world with DS!).

I’m always full to the brim with things to say about Audrey, about Down’s Syndrome, although I feel I’ve neglected the blog a little lately (which I’ll try to rectify!), but just know that this little human of ours is doing really well and we #wouldntchangeathing

World Down’s Syndrome Day 2017

Good morning! Just a quick post to mark World Down’s Syndrome Day 2017. We are busy planning a move, I’m job hunting, both kids are running around like crazies and my mum is ill. So the blog is suffering a little… but I wanted to mark WDSD with a little note.

Audrey is still surprising us everyday, her vocabulary is broader, her stroppiness is increasing, her need for independence (“I want to walk!”) and her loveliness never stops. She is an excellent big sister, but is not so inclined to share toys… but will share a cuddle. Rex looks to her for guidance, he is learning so much because of her. I certainly never thought I’d say this, but our lives are richer and happier with Down’s Syndrome in it. Fact.

So there you are, just be aware; Down’s Syndrome isn’t scary or sad. It’s pretty cool actually.

I missed our local T21 gathering to celebrate (on Sunday), in favour of a mums-only trip to see Beauty and the Beast! But the kids had fun with Daddy and Bibi and here is Audrey enjoying a bit of soft play…

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! 

  

World Down’s Syndrome Day 2015

21st March is #WDAD15 (World Down’s Syndrome Day). A time to raise awareness, raise money and raise a toast to that special person with an extra chromosome who has affected your life.

A year ago, Audrey was just 8 months old when we attended a local gathering and met lots of DS families… and faced seeing older children and adults with DS; which was something that definitely scared me back then. We came away feeling good. For me, raising awareness is predominantly about showing how ‘normal’ (whatever normal is!) life can be with a child who has DS. Of course things are different, but those early panics brought forth feelings that nothing would ever be the same again… That this little baby girl would have a difficult and sad life. So I want my blogging and instagramming to show that Audrey’s life isn’t a struggle, she’s not suffering, she’s just getting on with things and she just so happens to also be incredibly beautiful and wonderful!

Mixing with other families serves to strengthen the feeling that ‘everything is going to be ok’. The surprise of a child with DS can make you feel like your world has been crushed, when in fact it’s just shifted a little. You may end up on a slightly different path to the one you planned, but isn’t that what makes life great?

People said to me that Audrey would teach us a lot and initially I thought that was just a cheesy statement that gets dug up to make you feel better. But just 20 months in and it’s so true. She has taught us so much already. Priorities shift when you have a child, but I also think I look at life differently.

Isn’t it great to have people in the world who challenge your view of beauty? And make you less judgemental? Making you appreciate the smallest things? Well that’s what Audrey has done.

I never could have imagined that I would become this enthusiastic member of the Down’s syndrome community, but here I am, sharing our story and being thankful for Audrey everyday. She is the love of our life and we are so excited to watch her grow and learn. And how amazing is it that social media lets us watch other little ones with DS grow up too? We can all be connected from all around the world, sharing our ups and downs, giving support where needed. 

Happy World Down Syndrome Day (taking out the ‘s this time for the Americans!)! 

Oh and of course, here she is… Will try to get pictures of us at the local WDSD event and post them later.