The elephant in the room

So here’s a question for you, do you tell people your baby/child has Down’s Syndrome (obviously you don’t if they don’t have DS!)?

It’s certainly not my opening line when meeting new people, but I do tend to casually throw it in there just to clear the air and acknowledge the obvious.

Even though Audrey looks less and less “downsie” (our choice of phrase, one used to be cute, not offensive) to me everyday, I do know that she has the characteristics and strangers will either clock this and know, or at least wonder.

We actually do sometimes start to think it’s not obvious, but then we look at other babies with DS and she is quite clearly in their crew. It’s funny because it means we often look on other babies with extra “ahhhs” because they look like our baby.

Our first experience of a stranger actually acknowledging Audrey’s DS before we’d said anything was a barmaid (early 20s?) in a pub we were celebrating my Nan’s 95th birthday in. She just said “Down’s Syndrome babies are extra cute aren’t they?” And to be honest I felt a little surprised for a second (only because I hadn’t heard anyone just come our and say it like that) but I just smiled, said yes and moved on. But it did feel strange. Oh so they can see it…!

Another time, we were at a friends’ BBQ where lots of families we didn’t know were milling about. A child of around 6 was playing near Audrey and asked me why her tongue was sticking out. I just said she was dribbly and teething and it was just something she does. But at the time I had a little moment where I realised I was so used to Audrey’s tongue sticking out, it hadn’t occurred to me that this might be ‘something different’ about her that others would notice.

One of many strange worries I had in the early days, was of someone recognising her DS and saying something very unpleasant. Perhaps asking me if she was ‘retarded’ or a ‘mong’, neither of which have cropped up at this early stage. As time went on, I did start to chastise myself (“What decade did you think we are living in?!?”), but actually had a mum of a 3 year old boy with DS confirm someone did once ask if he was a ‘mongoloid’. I was stunned, but she said it was a very old lady and she was actually very nice, she just used a dated word and meant no offence.

In our short 15 months in this world, we haven’t had a lot of negativity to deal with. In the early days, there were some people who struggled with what to say and made some comments that were… Awkward… But mostly well-meaning and not nasty. People just saying how ‘devastated’ we must be or how ‘awful’ the news was… Which, once you’ve moved on and embraced the baby you’ve been given, is not they way to describe the happy event of having a baby.

My uncle also had a classic line… When we were discussing sleep and night feeds (which every one is obsessed with when making baby small talk), I referred to our NCT group and said we were lucky as some of the babies were waking a lot more than Audrey… To which he said (somehow thinking I was taking about a group of babies with DS and that some of them were ‘worse'(?) than Audrey); “Oh yes, some of them can be very disabled, can’t they?”. Yeesh.

In fact that was probably the main crux of any early negativity – misunderstanding that 90% of the time I was entering into a discussion about babies in general, not specifically babies with DS. Telling my mum we had started baby sign; “But she’s not deaf, I know some of them can be, but you can tell she can hear”. Cue discussion about baby sign being useful for all babies.

Mostly I worry that it my own insecurities/defensiveness that makes me read innocent comments as negative. When people ask about the possibility of us having baby number 2, I always feel as though they are surprised when we say we do want more children or I feel the question is worded as “So do you think you’ll have any more children?” and the end of the sentence (that is unspoken) is “…after what you’ve been through with this one?”. Yes, I’m reading into this too much!

One of the strangest places to encounter negativity (which was really just someone being honest, but made me uncomfortable), surprisingly came from another DS mama. I was at our pre-school DS group when Audrey was probably only around 5 months old and I was keen to meet a lady who had chosen a nursery near us for her little boy with DS and I wanted to know what the nursery was like etc. She came to the group with her new baby boy (without DS) as her oldest was at nursery that day.

She told me I was lucky Audrey kept her tongue in her mouth (things have changed a bit since then!), because the tongue hanging out “did not look good”. And then she told me how they had the amniocentesis for their second child as they “definitely didn’t want another child with DS”. Hmmm, I think I said nothing at that point. I asked about the nursery and she said they picked it because they had lived on the same street… so that wasn’t the glowing reference for the place I was hoping for. I haven’t actually seen her since, but it was certainly interesting meeting someone who felt that having a child with DS meant they had to take screening that bit further to ensure they didn’t have another. Ted and I have said that if we are lucky enough to have another baby, it’s probably not worth bothering with the screening as what difference would it make? We wouldn’t abort and although a bit of warning might help us prepare, we had no warning with Audrey and that turned out fine! Ha, well, better than fine – awesome!

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Spread a message with more ups than downs..?

Hayley from Downs Side Up shared this article on Facebook;

http://america.aljazeera.com/opinions/2014/10/down-s-behind-thesmiles.html

It’s a piece by David M Perry and it’s about raising awareness of Down’s Syndrome through cute pictures and how that does little to dispel the “they’re such happy people” myth and also fails to help raise awareness of some of the real challenges people with DS face.

Ok, so I couldn’t stop thinking about this article because I am 100% a spreader of this “cuteness porn”, but I have no desire to spread a message of sunshine, lollipops and rainbows… In fact my mother actually bought a t-shirt for Audrey when she was first born that said “Smile and be happy” on it and I absolutely lost the plot (hormones!) and made her take it back. I couldn’t think of anything worse for any child to wear (mega cheesy), but even more against it for Audrey – she’s not a poster girl for a constant cheerful disposition!

The thing is, what I think new-mums are looking for, and what I know I was/am looking for, is “inspiration porn”. All I wanted to see (and mostly still do) is that children with DS functioned happily in ‘normal’ families. Actually, no, better than that; I want to see glamorous families! Trendy families! Rock n roll!

I appreciate that it is important to spread a message to the world that people with DS are complex and emotional, that they have sad days, bad times, struggles… but that’s not necessarily the best starting point for awareness.

The leaflet I was passed when Audrey was born had that piece about Holland in it (which was actually lovely) and a lot of overwhelming health issue stuff that I just didn’t want to think about. I still don’t.

Awareness needs to be spread to;

New mums and dads
Prospective mums and dads
Friends
Family
Neighbours
Parents of children your kid will go to school with
That person you pass on the street
Ok, basically everyone.

They need to know that someone with DS is loved by a family of ‘typical’ people and that they aren’t scary or ugly… That they aren’t an alien race of beings… They are human and they fit into families of all shapes and sizes and do ‘normal’ things. They need to feel comfortable around someone with DS and this should lead to better job opportunities, inclusion and understanding.

Personally I don’t think the cuteness factor takes away from the bigger issues… It can be used as a tool to lure people in to find out more, surely? Every mum I follow on Instagram will have lured me in with a cute baby video or picture, but that’s just one part of their story and soon I’m following them through operations, sleep studies, second babies, sleepless nights, developmental milestones… We all share in the frustrations and the achievements, the ups and the downs. I know I’m seeking this stuff out, but anyone could be struck by a cute image or video and end up finding out more.

Macy Makes My Day (check them out on Instagram), is about a little girl with DS and her family… I found this account after a friend told me about this amazing inspirational family and what a cool account it was (the friend had no connection to the DS community, but was following Macy’s story). After following Macy, I found the DS hashtags that led me to countless blogs and IG accounts, all of which have taught me a lot about Down’s Syndrome, the good stuff and the bad.

Phew. I feel a bit better now I’ve got that off my chest.

Please excuse me whilst I spread some more cuteness for #DSAM2014

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Music and lyrics

Audrey first heard music (outside of the womb) in the arms of her daddy whilst mummy took a shower. We were in the room on the baby unit, where we had to spend the night to see how we got on with Audrey. A sort of transitional home from home, with nurses checking her over and weighing her (oh that obsession with her weight! So glad it’s over). We would not be allowed home unless she gained weight!

I entered the bedroom to be greeted by The Supremes singing “Baby Love”, Ted cradling Audrey in tears. She was 3 weeks old and looked like a music fan already. It was a bit of a turning point as she was no longer on the ward and seemed more like “ours”, plus a reaction to music made her that more… normal. I know that might sound ridiculous, but when your head is full of “difficulties” and “special needs”, it makes you think things won’t ever be “normal” and you worry what sort of interaction you might get from your little one. Of course I know now that those worries were pointless, but every little moment like this one served to teach me that.

We have played Audrey a lot of music since then, everything from The Beastie Boys to Blur to opera. She likes a good beat and from around 13/14 months she started dancing (rocking back and forth whilst sitting), which is amazing.

Of course Audrey loves the irritating music from a tacky, bright, light-up toy too and is getting quite adept at bashing the right places to get the music going!

Thankfully she is just as happy to listen to music we like, especially when we sing along and dance around the room. In fact, I’ve had several of those funny lyric-realisation moments that have led to tears… You know when you’re a teenager and suddenly you understand what the love songs are about? (Imagine me, 90s teen, ‘Again’ by Janet Jackson on repeat…). Well you get to experience that revelation again after having a baby.

When Stevie Wonder (one of my favourites), sings “Isn’t she lovely, made from love” I get such a warm, positive feeling. “Made from love” just gets me every time. It sums up making Audrey.

I’m also a Justin Timberlake fan and although I’m aware ‘Mirrors’ is about his wife, there was a sudden point listening to the lyrics that really struck me and now it has become an Audrey song…

I’m lookin’ right at the other half of me,
The vacancy that sat in my heart,
Is a space that you now hold.
Show me how to fight for now,
And I’ll tell you, baby it was easy
Comin’ back here to you once I figured it out,
You were right here all along.

It reminds me of when we reminisced about Audrey’s scan picture (she was pouting or sticking out her tongue) and the fact that she was such an active, kicky baby. There we were, looking at her a few weeks old, little tongue sticking out, as she kicked her legs… And then we realised there was no need to mourn the baby we thought was there – it was Audrey all along!

Here’s that cheeky tongue:

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Upsetting news

I mentioned a few posts back that I was in touch with a woman who had prenatal screening that advised 99% that the foetus had Down’s Syndrome. I couldn’t offer her the perspective of someone who knew they were carrying a child with special needs, so I put her in touch with someone who could. Today we found out that she decided to terminate.

I am NOT saying she shouldn’t have terminated or that our input should have made her want to keep the baby, I’m just saddened that it’s so scary to have a child with special needs that there’s a way to opt out. I’m saddened that this is the norm. 92% of women who receive a prenatal diagnosis of DS, terminate and whilst I don’t know what it’s like to receive the news whilst pregnant, I do know what it’s like to feel like the diagnosis is the worst thing in the world and soon find out it’s not.

In this particular case, the woman in question met with several families, spoke to/emailed others… so she probably had more information than most before making the decision. I guess that’s really why I find the news so upsetting; even with support and positivity from the Down’s Syndrome community; she still felt she couldn’t keep the baby.

Whilst I know the decision wouldn’t have been taken lightly and I think she was very brave to contact DS families to help her and her partner make the choice, it still feels like we all failed to convince her it would be ok in the end.

This experience has made me more determined than ever to raise awareness and get people falling in love with Audrey. I hope our family can be a source of comfort, inspiration and hope for anyone wondering what life with a baby with DS is like.

Stuff and things 2

So we had a relatively quiet weekend. Ted and I are both hoarders, so we aimed to get junk out to charity shops and look at what we really “need”. Ted is also obsessed by bread baking at the moment, so a high level of bread was consumed.

On Friday I was excited to meet the latest baby with DS on the block at our monthly pre-school DS group (the one with the fab uncle who came to meet everyone at the T21 picnic). I’ve seen other mamas comment on this – that exciting feeling when someone joins your club, but you know they will be feeling very different about it… Really lovely to see gorgeous little Elena though and meet her mummy and daddy. She is a month old now and doing really well. We met again for coffee on Monday afternoon, Elena slept the whole time. Ahhh those days…

Monday dinner time Audrey gave me such a “lift” by doing the most simple yet amazing thing: she fed herself with a spoon!!! Aaaggghh! Not sure how to get the video on here… You can see it in our Instagram though (@vickywooandaudreyboo). I just love that something so small is a big step forward.

At nursery, the had a collage on the wall to celebrate the book ‘Guess How Much I Love You” and Audrey’s picture was there, showing her enjoying the book!

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In other excitement, Audrey has her first modelling job today! More info to follow, hoping her career takes off so she can buy us a house!!

Down’s Syndrome Awareness Month approaching…

When Audrey was born I wasted too much time worrying about the most ridiculous superficial nonsense! I thought about things like her not having any fashion sense! That she might be fat! That mother-daughter time would never be how I had once dreamed… I’m so ashamed by these thoughts.

One of the worst/craziest worries was that I would never think she was beautiful. Here we are at 14 months, she’s 100% the most beautiful baby I have ever seen. It should be a given that a mother would feel that way about her child.

I suspect my blog posts will get a bit repetitive, I apologise in advance! But I’ve realised the importance/benefit of “raising awareness”. If people were more aware and if disabilities were a part of everyday life, those of us suddenly thrust into this world might not feel so awful/negative about it.

October is Down’s Syndrome Awareness Month.

In October 2012 I fell pregnant with Audrey. In October 2013 she was 3 months old. Thanks to Instagram I found out about DSAM and found all the DS hashtags that led to me to become part of a community of wonderful people enjoying life and sharing their DS experiences. Seeing happy families from around the word really did make a difference to me. It has given me hope, support and also the confidence to share our story and share Audrey with the world.

Back in October 2013 I had around 80 followers on IG, a year on I (Audrey!) have 720!

I must admit, my first thoughts about Down’s Syndrome awareness was; “I’m aware of it, as are most people, not really sure why we need to increase awareness”. Ha. But gradually I realised what the “awareness” was doing for me and how much strength you can gain from seeing other people go through what you’ve been through and come out the other side.

And then I think about awareness and inclusion and what that can do for the world. If TV and adverts and mainstream media embraced special needs, disabled people, minorities… Maybe we’d all feel more comfortable around people who are “different” to the norm. Maybe we’d all feel less scared by “different”. And maybe a woman somewhere getting told her baby has DS won’t immediately feel the future has been destroyed, but will think “Oh, ok, unexpected, but people with DS lead happy and fulfilled lives, things are going to be ok”.

Audrey in October 2013…

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And now (Sept 2014)…

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The road ahead…

When you have a baby, you suddenly realise you are at the beginning of a very long journey. You look at this tiny bundle that is totally reliant on you and the scale of what you’ve taken on hits you – they need you for at least the next 18 years.

Now imagine that heavy realisation combined with all the preconceptions about Down’s Syndrome…

My husband has this amazing positivity that can turn anything into a good thing. When Audrey was just weeks old he was saying how lucky we would be potentially never experiencing “empty nest”! I liked his thinking, however I had always (when thinking about having children) imagined the “pay off” towards the end when they look after you!

It is natural to always be looking to the future (Where will our next holiday be? Where is my career going? etc), but Audrey is (slowly) helping me to focus on the present. Wondering and worrying about when she might crawl, when she might get teeth and what sort of adult she might be… It’s all pointless. I can’t predict these things and why do I need to know when these things will happen?! Do parents of “typical” babies fret about these things?

One of the biggest realisations after becoming a parent of a special needs child, is that life goes on and in not much of a different way to how you imagined it. However there are times where I worry we are in denial about what having DS means to Audrey and her life. Other times I’m just thankful we are positive people and that we don’t let it get on top of us.

The fact remains that Audrey’s life will be different to that of a typical child. There will be more challenges and there will be difficult times, but that doesn’t have to be our focus, we can choose to carry on as “normal”. I have certainly said many times how glad I am that we didn’t know Audrey had DS when I was pregnant. The pregnancy was so happy and we had no time to fret or form ideas about this baby growing inside me… It was relatively worry-free.

I think the best plan is to enjoy the journey and let the road unfold ahead of us like the magical mystery tour that it should be…The ups and the downs…We’ve already shown we can handle surprises…

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Stuff and things

My husband and I say “stuff and things” as a reply that basically means “I can’t think of anything to say right now” or something like that. It’s difficult to explain our weird ways to others.

Anyway, I’ve decided to take “stuff and things” as a label for posts about our day to day life. Rather than all the comment on various DS/baby issues… Just a little catch up on what we’ve been up to (if anything!). So here goes, the first chapter of stuff and things…

This week I gave Audrey a cold sore 😦 it was always going to happen, I get at least 2 a year and Audrey and I kiss a lot).They don’t seem to be bothering her, but they are bothering me – mine has cleared up, she has one either side of her mouth in full swing, so we can’t kiss! Booo.

In happier news we went to Woodfest in our local park on Saturday. I held a tiny owl and Audrey watched. Then we headed to the Brighton Food Festival on Hove Lawns and Audrey went on her first fairground ride with Daddy!

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Audrey wasn’t that fussed about the ride, but she liked seeing me on the sidelines.

Sunday we went to a DS picnic back at St Ann’s Well Gardens. I didn’t take any pictures, doh! But we met up with other local DS families and Audrey managed to nap even though a little 3 year old monkey called Thomas came over to investigate and squeezed her foot. She also slept through Elliot passing by whilst roaring like a dinosaur… Ahh the toddlers are quite an eye opener!

Fun to see other little uns with DS doing well and having fun with their siblings. There was even a guy and his wife who popped by – their niece was born last week and unexpectedly had DS. How amazing that he took the time to look into the local DS community, his sister having only given birth last week! What a fab uncle.

Last night Audrey had her sleep study to hopefully sign her off from the care of the hospital (and confirm she doesn’t need to go back on oxygen at night), no idea how it went as she is in her own room these days. The probe was off her foot in the morning though, wriggly little lady! Fingers crossed….

Too much information?

Instagram has become an obsession… What was once a place for my food photos has now become an Audrey micro-blog and a place where I am part of a DS community. It’s an amazing place for inspiration… Little ones walking, talking, starting school… positive images of families going about their life with an extra chromosome in the mix.

But there are downsides to following these other mummies/families… Operations, sleep studies, hospital visits, illness, delays in development, disappointment… We are all sharing our lives and this includes the downs as well as the ups… But the thing is, we are all very different. Kids with DS may share characteristics, but they are all still individuals and have varying needs.

For the most part I have avoided medical information on Down’s Syndrome. I pick up snippets of info from other people, but on the whole it’s not fun to be worrying about Audrey going back on oxygen, having an op to remove her adenoids or losing her hearing. Unfortunately, following these other T21 families has exposed me to some of the possible issues Audrey might face and have also led me down that unhealthy unhappy path… Comparison.

I’ve seen on more than one occasion this quote posted on IG:

“Comparison is the thief of joy”

And indeed it is.

It’s fine seeing Audrey’s ‘typical baby’ friends walking, talking, growing… But what about a baby with DS very close to Audrey’s age doing things Audrey can’t do? It’s tougher to be relaxed, I guess because we all have high hopes for our kids, even if from the outset they have something about them that prepares us for delays. Our expectations for Audrey are that she will be the best that she can be (and believe me, I don’t mean we’ll be pushing her and forcing her), we just expect her to be the best downsie ever! So when you’re following the progress of another little one and they are signing/crawling/holding their bottle and your child isn’t… It’s hard not to feel… Deflated.

The best advice I can give to anyone else in this situation is to focus on the positive and, as Wayne would say; “Live in the now!”.

Audrey is currently getting on just fine, with no major health issues. She sits up all day, she waves, claps, rocks to music, feeds herself finger food, attempts to hold her water cup, nods when we nod, plays peekaboo, babbles all sorts, hey, when I start to list things she can do a lot! Phew!

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Daddy and Audrey x

The Richard Dawkins malarkey

This week there was quite a fuss around some Richard Dawkins tweets. As part of the DS community I certainly took an interest and spent far too long torturing myself with what was said and how people responded.

To save me explaining, here’s a link for more info:

http://www.independent.co.uk/news/people/richard-dawkins-on-babies-with-down-syndrome-abort-it-and-try-again-it-would-be-immoral-to-bring-it-into-the-world-9681549.html

I saw some of the DS tweeters fighting back and the trolls who replied in offensive and upsetting ways, so I certainly had no inclination to reply to him. However I thought it worthy of a blog post.

To all those who explained why they would abort a foetus with DS, I understand your thinking… The old me (pre-Audrey) would have also thought that having a special needs child would mean;

That I couldn’t work.
That the child would have no quality of life.
That we would have a very depressing existence, filled with hospital visits and therapy.
That our friends and family would find it difficult to love the child.
That the child would be difficult to love.

All of the above seems laughable now we have Audrey in our lives.

I work 3 days a week.
Audrey has a perfectly happy life, she’s 13 months, but is a bit more like a 7 month old.
We have had hospital visits and some physiotherapy. None of this (so far, touch wood) has been as bad as I had imagined.
And the love… She is so easy to love and everybody loves her. Our friends and family have been amazing.

I do appreciate that from the screening, you won’t be able to tell if the child will be healthy or “high functioning”, however it’s clear that things have really moved on and children with DS have better lives than ever. Better life expectancy and opportunities overall.

Hayley from Down’s Side Up wrote a wonderful piece that really says it all so beautifully:

http://m.huffpost.com/uk/entry/5697336

And, as always, Audrey’s face says it all so beautifully for me…

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